Three Little Saints

Petrified

2011-11-30T16:29:00.001-05:00

When Kyle was born we had no idea or concept what care would be involved in taking care of our guy. After 2 years of life he maxed out of our private health insurance. At the time I was scared and mortified....if he had already maxed out what would we do without insurance? Luckily our drs helped point out the way and I quickly got Kyle signed up with our state insurance. For 5 years I have had to have everything done perfectly or Kyle is in jeopardy of losing his insurance- twice a year I have to provide over 50 pages of documentation to show why Kyle needs his insurance and his nurses. When we went to Disney for Kyle's MAW trip we had a scheduled conference call with the state for his yearly phone review, 2 weeks before we left I called the state and told them where we would be. They said oh no problem we will reschedule you for the next week. Great, awesome right?! Yah not so much, so and so didn't put it in the computer and we came home to Kyle having no health insurance. It took 4 days for the state to realize their mistake and correct it, 4 days in our world with no insurance is beyond expensive. This is only one example of what happens in the works of state insurance. Even with all the headaches and chasing my tail I stayed so grateful...even with all the extras they don't cover I still kept thanking god every day for the help. We would honestly be homeless if we did not get this assistance.So 2 weeks ago I received a phone call from the State telling me that after reviewing Kyle's chart they wanted to offer us more nursing hours. They were shocked at the amount we used with the level of care needed to care for our guy. I'm not ashamed to admit that I sobbed on the phone. Kyle has not slept thru the night in 15 months. He is up multiple times a night requiring IV meds and other comforts. I don't complain about it but I'm exhausted. I'm fading. On top of that after 7 years I want to hold and comfort my baby, not hold him down and continue to always be doing painful things to him. So the thought of some additional help blew my mind. Five hours later I receive a second phone call saying...ooops. Wow, we made a mistake..because your husband has a job Kyle only qualifies for a program that has a cap on nursing hours, in fact because of this you will max out his nursing hours in five months. If you max out he will lose ALL of his insurance for the rest of his calendar year. Kyle qualifies for unlimited nursing hours but because M works we can't get that insurance (although if he quit or was fired our whole family would qualify). Shocked, worried, sad. The state had the nerve to say to me...the only thing that saved you last year was your son was extremely sick and in the hospital most of the year. We are being punished for keeping Kyle at home with us. We are making ourselves sick with exhaustion chasing our tails to keep our guy where he wants to be in cooperation and with full support of his palliative care drs and we are being punished for that. Punished because M works his tail off. They tell us there is nothing we can do because it's a federally mandated program. We have no idea what the next steps are. How can a child qualify for one thing and be punished because his parents are trying to take great care of him. XOk

Now what?

2011-11-11T10:57:00.001-05:00

There is so much to post, so much to update yet I'm so focused on something I'm finding it hard to deal with much else. For over 7 years we have fought for our Kyle. For 7 years there has always been a next step....a new hope...another dream. Right now we are living in the land of no new steps. No other options.... When we got home from Kyle's Make A Wish it was the first time in over 7 years that there was no next step for me to focus on, no next step to hope for. It was the first time I had to force myself to realize and deal with the fact that this is our life...there is no miracle cure out there for our sweet boy. I can say I didn't handle our first week home well, I felt so out of sorts and incredibly sad. We are maintaining our sweet boy and that is not a good feeling for me. I'm trying to take it a day at a time, trying to not focus on the future but instead focus on and be grateful for today...for the most part that's working for me but there are moments where all this just seems like to much...to painful. I so desperately want to fix this..

Our Make A Wish trip was wonderful, to have our family all in the same place for a week of fun was priceless...Give Kids the World which was the resort we stayed at was beyond amazing..they treated all 3 kids like little heroes and that was great for all of them. I'm pretty sure the fact that they had a pool that Kyle could walk into was one of our guy's favorite things on the trip I know that swimming is one of the things that Kyle misses the most. It was beautiful to watch his sweet face when he walked into the pool...priceless.

If anyone is interested in the Team Kyle Energy Armor bands...please email my girls at teamkyle2004@gmail.com We need your size and shipping info <3 thank you EA for this incredible gift...your hearts are beyond anything I could describe....
To see pictures of the bands you can check out Kyle's fb page... www.facebook.com/livinglifefortoday

Thank you for loving us. I know it's not always easy but for those of you still sticking around...thank you.

why.

2011-10-16T10:34:00.000-04:00

Soon after my last post we finally got the official word from Pittsburgh. They called to tell us that after reviewing Kyle's case again they sadly have nothing to offer him. They told us at this point all we can do is keep him as comfortable as possible and enjoy our time with him. I have to say the conversation was short, poor Jack had just gotten home from school and we were having a snack together...the next thing he know his Momma is bawling and speechless. I called Mark at work and could only whisper the word Pittsburgh...

After meeting with his Drs here we know that this was probably coming but it still hurt deeply. I will admit I pleaded with the transplant coordinator, asking her what I was supposed to do...wait for an infection to take his life...continue to watch him suffer with chronic pain and exhaustion? As his Mother how the hell do you do that? After 7 years of fighting for his life I'm supposed to sit back and wait.....how? I'm his Momma, I fix everything.

I guess the worst part of the day was Alex coming in and asking me what was going on. After telling her we would not be traveling to Pittsburgh her face completely fell and she asked me if her brother is doing to die? How in god's name do you answer that? It was almost as painful as the phone call....for Alex's privacy I won't get in to our entire conversation, please know we are getting help for our kids and I do appreciate all the emails with suggestions for them..

We are so heartbroken, but we are not giving up. For now we are keeping our Kyle comfortable, we are exploring some options to keep him even more comfortable while trying to listen to his wishes of no more surgeries...His care is increasing and I'm finding it more and more overwhelming...I'm juggling with trying to be his Mom and his nurse, there are days where it hurts so much..I want to hold his hand not hold him down.

We leave for our Make A Wish trip to Disney in less then 2 weeks, we are so nervous but incredibly excited...praying our sweet boy can enjoy all the things he's been talking about for the last 2 years.

XO
K

Still here. I hope you are also.

2011-09-14T11:52:00.000-04:00

I have tried to blog so many times and every time I sit down to do it the thoughts and emotions come out all jumbled and I end up deleting it. I'm determined to hit publish on this when I get to the end. There is so much to update, our Kyle....my little guy who still makes my heart melt every single time I see his face. As most of you know we had the gastric pacer placed in his bowels. We knew it was experimental and you would think after all this time I would be able to keep my emotions in check and not get to hopeful but that was not the case. The pacer was a huge bust for Kyle, not only did it cause two major infections but it didn't help our guy's motility at all. It was a painful process for all of us. Mostly for Kyle who had to endure the infections and the painful process of us trying to get feeds started. At one point he actually told us that he doesn't want to keep trying food, it makes his insides hurt to much. It was a painful conversation for all of us. Kyle's records were sent to Pittsburgh where he was evaluated for a multi organ transplant. We got word from them a few months ago that he was not a candidate for transplant. They believe strongly that he would not survive the process and sadly they can not give organs to someone who they believe would pass away from the process. This was a devastating blow to us. A transplant was our Kyle's only chance at a life. We took this news hard and we are still trying to absorb it. We will be traveling to Pittsburgh soon as the intestinal care team has offered to evaluate him to see if they can help keep our guy comfortable. There is still a slight chance we can get to Pittsburgh and after they see him they would reconsider his case but at this point we are not sure we would put Kyle thru all that. At the end of the day he would need 5 organs. Please understand that we are not giving up. We never will give up. Never. But we are re focusing our energy in to living every single day to the fullest. Kyle has been very vocal lately on how he wants his life to go. We are listening to him and including him in all decisions. As his Momma I may not like some of those decisions but I need to remember that Kyle is the one living inside his body, not me. I'm grateful for the team we have that surround our guy, Kyle is asking to stay out of the hospital and unless he needs to be in ICU or he gets a line infecition we will be keeping him at home. We have a hospital room set up here and again we are blessed to have all the needed supplies and medicines to keep him comfortable and safe. He is attending school as often as possible although he's only making it a couple hours a day. When he gets home he tends to sleep a lot but it's so worth it. He loves school so much and again when he is at school he is surrounded by an incredible team. There are still so many things to update but I need to take it one step at a time.. I have missed blogging...the release it gives is a huge help. So I hope this is not to confusing to read...I hope to be back tomorrow to tell you about the incredible and generous people that have come in to our livesXOXOK

Coping

2011-03-29T08:34:00.003-04:00

I never gave a lot of thought to coping. How we cope. I have over the last few years realized that people cope with things in different ways. I know that in a sense some people feel there is a healthy way to cope with stress and fear, but I really think and believe that no one can force you to cope in ways that are not comfortable with you. I think we can all be taught better ways to cope but that you need to do it in ways that your comfortable with. I do know that when I'm hurting or scared I tend to pull away, shut down and go to a place that is comforting to me. My coping skills lacked so much that in a way it almost put an end to my marriage. Mark and I coped so differently with Kyle's illness that instead of trying to work together and bring our different coping methods together we ended up driving each other away. I felt the overwhelming need to be strong and be super mom. While in reality me showing that I wasn't would actually have been better. Being strong all the time is not a coping skill, it took me a long time to see this. My kids needed to see that I was worried, my friends, my husband. Putting up a front only works for so long, it's exhausting. For me being human showing real emotions was to painful. I think that a big part of me was worried that if I finally admitted that our Kyle was really sick, that each day I worried he would not wake up, that at some point his little body would no longer be able to fight this incredibly hard battle....if I admitted that and tried to process and cope with that....well I think I was afraid I wouldn't get up anymore. I do see now that it's ok for me to say my fears out loud, that talking about them with someone is a coping skill that I need. I am lucky, my husband, my family, my kids all accept me for me. They have helped me be real, to learn how to cope in a healthy way. I'm not all the way there yet....but I'm not sure anyone is ever all the way there. Our Kyle had his picc changed last week and also had a study done. The results of the study while no surprise were hard to digest. We know we are running out of options. We head to Columbus the second week of May, for our last shot before we have to make some incredibly hard choices. Kyle is not happy about the return trip. We are trying to keep him positive, he loves some of the nurses and therapists he got to work with, but he tells us he's scared...and I can't blame him. XO K

update

2011-03-16T12:49:00.003-04:00

I felt that overwhelming urge to blog this morning which felt really good...then I opened up my blog and felt a loss for words. I stared at the blank white page and wondered where to start....things have been, ugh...tough, trying, overwhelming....for weeks we have been trying to make some very serious decisions for Kyle and his future. Probably the biggest ones to date and I have found that to be beyond hard. It makes my Momma heart hurt and it startles me awake at night and fills my dreams with fears. Kyle and I are not getting much sleep and I know that's not helping my current mental state. We have been trying to take all the information we can get our hands on and used that to decide to go back to Columbus in early May and take our last shot at trying to get our sweet boy some relief. It is our last step before heading to Pittsburgh and going the transplant route or I should say having Kyle evaluated. Sadly it looks like Kyle would need at least 4 organs and that's alot for a little boy. It's not where we want to go and it's also not a for sure thing, but sadly we have to start thinking and talking about it. Our other children are filled with questions and we have been trying to answer those questions as best we can but it's hard when you don't have the answers.

Our family has been surrounded by love not only from our family and friends but by our community and our neighbors. I honestly have been in awe of the love shown to our family and I'm beyond grateful. Some of our worries and stress have been alleviated by these incredible souls and I will always be grateful to them.

I'm all over the place, but if your a long time reader you know that's pretty normal for me.;) We head back in to the hospital next week for some testing and a new line for the big guy. After what happened last time Kyle went under I'm petrified but I take comfort in knowing that Kyle's team here is working behind the scenes to make sure our Kyle is safe when this all takes place.. I will update from the hospital next week and promise to keep you all posted. As alwasy...thank you....for loving our Kyle and honestly...for loving us.

XO
K

How are you, how is Kyle?

2011-03-03T20:12:00.002-05:00

It's the question I swear that makes me cringe the most....you see, I want Kyle better with every single part of my body, but so do so many people. When people ask how Kyle is you can actually see the hope in their eyes or even the hope in their text messages, emails, IM's....they want Kyle to be better almost as much as we do. Most think since we are home that all must be well...oh I wish that was the case. Things have been tough, we are completely unable to start anything thru Kyle's tubes and now it seems he is losing motility in his esophagus. He is unable to handle his own secretions and we have had to start another IV med to try to help with that. His energy level is low and his overall condition is still troubling us. We had thought he'd be back at school by now at least at half days. His team is talking to us about going to Pittsburgh to talk to their transplant team, what is troubling is the amount of organs that Kyle would need transplanted. The odds are not even close in his favor. We still have the option of going back to Columbus to place the pacer but we've been told the chances of that working are poor. Sadly we need to make a plan soon...the pressure to make that is overwhelming us. I keep hoping for peace in my heart, that I will wake up one morning and just know what to do....

Please keep asking how Kyle is, ask how we are....but know depending on the day you may get a very truthful answer. <3

Love
K

here

2011-02-13T12:43:00.003-05:00

I have not even clicked on this blog since November, seems unreal to me. A place that brought me such comfort and love became a place where I started to stop being real...I am and I know it, to sensitive. While I may say that I'm past things and that the small amount of single minded critics don't hurt me....well that would be a lie. It does hurt. It makes me want to drag them in to my world, Kyle's world...separate them from their home, their lives, their loves....and force them to stay up for days at a time watching their child fight for life. My hurt side wants that, my heart is grateful that they will never know my pain. If I have learned things from all of this.....never, ever judge anyone. Ever. Until you walk in their shoes....live their life....hurt the way they do....
I'm done with that....I miss my blogging...I'm ashamed that I stayed away so long. So on to the update.

The last few months have been tough....Kyle's present condition is hard. His health is not well and we are concerned. His stomach is literally covered with tubes, bags, and wounds. His mental health, our Kyle....glimpses of our Kyle....are few and far between. There is no handbook here, as his parents we are trying our best to help him....he's been thru to much. His body and mind need rest....which is what we are trying to give him. The next few weeks will be full of rest and I hope hospital free, his mind needs that. Here he feels safe....and while his daily wound and bag changes are painful for him he knows that I am doing what I need to do to keep him safe and here with me. So I hope your back with us. We need you... Tomorrow I will update with where we stand as far as Kyle's feeds.

XO
K

update

2010-11-26T10:47:00.002-05:00

It's been hard to post and update. I'm not sure if it's exhaustion or the lack of good news. It's my nature to always try to find some good in the bad. I think if I don't find some good something will snap. When I can't find good I go silent and withdraw. I hate that feeling. Like I said in the last post, while Kyle's surgery is a success in the sense of everything they needed to do surgically was done, it is not a success in what we so needed to be successful. The amount of bile that is still pushing into his esophagus is painful and even though it's still on suction 24 hours a day he is still struggling with pain.

So, our new plan. On Tuesday Kyle will head back to the OR to place a pacer(a temporary pacer a permanent one will not be placed unless we see it working) in his small bowel. While gastric pacing is more common we know that trying to pace Kyle's stomach will not do us any good. So the surgeon is going to place one in his small bowel. Not done very much but we are willing to try anything at this point. It is our second to last option before a transplant. The word transplant is being said with much more frequency around us and it's brutal to hear. But that's a post for another day.

For now we are enjoying the kids being here for a few days and I am holding them and loving on them every single second. It was a brutal drive for them but Mark was amazing and it's been so uplifting to have them here. Hard for them to see Kyle in pain but they are handling it so well....we have had some talks with them and they know that him and I will be here for a while. They are so strong and so brave. I'm so proud of them.

XOOX
K

Refusing to give up

2010-11-18T17:57:00.002-05:00

The last few days have been tough for us. While Kyle is healing as expected from surgery we are having a very hard time getting anything started through the new j tube. It's been a heart wrenching process of trying and then watching him be in agony over it. Each time we start we have to stop hours later due to pain and his increase in bile and output. The NG tube that is in his nose that runs to the bottom of his esophagus that should have been out days ago is still on suction to try to keep the bile that's going up instead of down out of his lungs. We tried yesterday to cap it off and he suffered all night because of it. The surgeons and GI team aren't happy and have said we need to start looking at more aggressive options for him. The fevers and blood pressures are still an issue and that is troubling me. We all agree that Kyle's body still needs time to heal and we are going to go home and take a 4 - 5 week break. We will come back to Columbus at the beginning of January. Over the next few weeks we will have to make some difficult choices for our Kyle and the pressure of that is already weighing heavily on us. I'm so incredibly grateful that Kyle's team in Maine has been literally walking beside us through this whole trip here and are prepared to help us get him back to MMC and then home for at least some time. We both need some mental cheering up. It's been hard to watch Kyle mentally stress, sometimes I think watching that is almost as hard as watching the physical side of this. We both are spent, I'm not as strong as when this started, small things seem to crack me and I know we need to recharge.

What I can say is that we are NOT giving up on our dreams for Kyle...while others this week may be doubting Kyle's gi tract I know Kyle, he needs more time, more healing, more love and snuggles from his family in Maine.

XO
K

explanation

2010-11-13T08:34:00.002-05:00

I didn't realize yesterday that my blog could be taken the wrong way or that anyone would take from it that I was saying not to pray for Kyle. A comment was left on Team Kyle last night that honestly was hurtful and confusing to me. I won't post it and I won't directly address it again. What I will say is this....I value and appreciate all prayers being said for Kyle...while I may have some issues with God, he for sure does not. We don't publish everything here on this blog, some things remain private for our family and our children. We have had to talk to Kyle about heaven and God....for me it's a very difficult and sad topic. No child at the age of 6 should have to have that conversation...ever. I don't care what anyone says to me, that conversation is one that should not have to be had. We've had to talk to Alex about it, I can say it's almost as painful. While I want my children to know God, I don't want them to be afraid that they will need to go to heaven now. I also know that god can be a heavy topic, I never post about it lightly. While I say all that please know that this is out blog....as long as I'm not hurting my children or my husband I will write how I feel. I have watched the sweetest child suffer for 6 years, I've watched my family almost fall apart around me, I have ached to my core. I won't ever again justify my feelings.

I thank God for my son....I thank him for the time we've had with Kyle, but I won't thank him for the pain I watch daily. I'm trying, trust me I'm jealous of the comfort people get from God...I really am. I want to get there, and I hope I can someday. But please.....I am so grateful for your thoughts, love and prayers.

XO
K

A message to the Big guy

2010-11-12T17:09:00.002-05:00

Ahhhh, I bet a few of you clicked over thinking that maybe I was writing to the big man upstairs again, nope...not happening...him and I are still on the outs...although I may talk every single day to my Mom and MIL (because for sure if there is a heaven my mom and mil are up there) I still struggle daily with you know who...I can't begin to wrap my head around all this, nor can I make sense of any of it. So for today I'll spare you my angry thoughts about the big guy upstairs.

Kyle...Our Big Guy....

It's been a tough month for you little man, your struggling and neither your Dad or I can help you...we can hold your hand, we can kiss your sweaty head, we can whisper in your ear....but we can't take any of this away....it's a helpless feeling. When your little eyes plead with us to make it stop it's like something taring at my soul. I sit and think alot, I wonder how on earth such a tiny body can fight so hard, I wonder where you get the strength to keep doing this....you never ever give up, it's almost like each day you fight harder, more determined to beat this. We have no idea if the surgery worked or not, right now you've got the surgeons scratching their heads and feeling frustrated....but your Dad and I know you, it takes time and we haven't given up on a better quality of life for you. You deserve us to keep fighting and we will....whatever it takes Big...

I could not be any prouder to be your Mommy

Recovery

2010-11-10T14:19:00.002-05:00

From Kate:

"Our Kyle has once again shown us how things will go...he's off the vent and breathing on his own....clearly still on oxygen, but he's resting comfortably right now. This is step one"

He was even a little ticked off about missing Bingo in the playroom last night :)

Living Life for Today ♥

Carissa

Out of Surgery

2010-11-09T20:57:00.003-05:00

Kyle is out of surgery. Heading straight to ICU. He is stable but on a lot of support. Surgeon had to do extensive repairs. Will update with more details tomorrow. Pray for a peaceful night of rest for Kyle, Kate and Mark. They appreciate everyone's love and support today and always.

Carissa

Update

2010-11-09T18:25:00.003-05:00

Kyle has been in surgery for about 3 hours now. Kate just heard from the OR and Kyle is doing ok and the surgeons are working away - that is all. Keep praying...
Carissa

Surgery Day

2010-11-09T14:21:00.004-05:00

This is Carissa with a quick update on behalf of Kate and Mark. Today, after a 3+ week wait in Columbus, Kyle will be finally undergoing his surgery. It is scheduled for 2 pm and will be a long and complicated surgery. I will try to do a few updates here as I get them since I know a lot of you are not on facebook for the updates. If you are on facebook, you can follow along with Kyle's journey on the Team Kyle page. There has also been a fund set up for the family to help with everyday expenses that are building up - if you'd like visit the I *heart* KyleStClair page to learn more!
Thank you for loving Kyle and the whole family! Keep the prayers and good thoughts coming, they mean the world to the family!

Carissa

Exhaustion and heartache

2010-10-31T10:14:00.002-04:00

I have heard numerous times people use the quote, having a child is like watching your heart beat outside your body....when you have a child who is scared, in pain and that you could possibly lose...it's so much more then that...it's like your entire body is thrown into trauma..it's like watching you entire life slip between your fingers, and there isn't a damn thing you can do about it.

I don't have time to get into the details...I hope to be able to fill in the gaps soon....but the long story short is that Kyle is sick. On top of his complicated issues he got a massive infection in his gall bladder, one that could have in hours taken him from us. He became very septic and was taken into emergency surgery. There is a whole long story about why they put a drain in instead of taking the gall bladder, to put it simply he was far to sick to open him up...on top of that his anatomy is so screwed up it put him into a dangerous category.

He's off the vent but is struggling, he's on alot of oxygen and working hard to breath...his labs aren't great but are slowly improving, we have a long way to go and this is a major complication to his next surgery.

Please keep praying and love our family....
XO
K

Quick update

2010-10-24T07:25:00.002-04:00

Early Saturday morning the surgeons came in to tell me that Kyle's line grew fungi. It was like a kick in the teeth, fungi is one of those bugs that you really don't want, it's very hard to clear from lines and it can make kids incredibly sick. We started anti fungal meds immediately and we moved on with our day. I won't get in to the specifics of how I found out that we are now pulling Kyle's line this morning or my thoughts on that because we'd be here all day and I don't have much time. When they pull the line they will place two normal IV's and then we start to hope and pray he doesn't blow those (which we know he will) before tomorrow am... He blows those lines so quickly. I told the dr last night I'm not torturing him all day today so we need a better plan then re-sticking him 100 times....he's a terrible stick, he's had so many IV's, lines, and blood draws that there isn't much left. As for surgery on Tuesday we have been told to not be very hopeful about that...which I'm trying so hard not to focus on today. I can't change any of this I just need to get us thru it.

Will update later tonight.
XO
Kate

dragging my feet

2010-10-20T15:36:00.003-04:00

I am..I can't even believe I'm about to have to type this let alone it be a reality. Yesterday we came in early for Kyle's upper UGI and swallow study. Honestly I knew it was going to be a disaster..I mean really a swallow study on a kid who doesn't drink by mouth?! We got registered, got checked in and made our way to flouro....started the test, and then sat there and watched as they injected dye into his g tube and waited....and waited...and waited as it sat there and didn't move. We waited and watched as the barium made it's way up....not down the way it's supposed to go. We watched it snake it's way up into the loops of bowel that are now in Kyle's esophagus....I could literally feel myself start to sweat. The the dr says ok I need him to drink....yah ok so they give me a syringe and into his mouth I go, at this point feeling like the worst mother on the planet...he starts to scream and choke but does swallow....and we wait and watch again as the barium pools at the bottom of his esophagus and goes no where. At this point the Dr says..get up and walk for 30 minutes and we can take another series of pictures...we then repeat this step 3 more times....and we watch as the barium continues to go no where.

After all this Kyle is exhausted and just wants to get to his room to rest, we go through admitting and get to our room. About 20 minutes into this process Kyle starts to complain that he's cold, which is always a signal that a fever is coming, I start to think that's impossible, I mean really....there is no way this could be happening, but it is and within another 20 minutes he hits 102.6. Blood cultures are drawn, a full viral workup is done and we get a chest x ray. The surgeon comes in and explains his plan for the next day and says....well clearly surgery depends on if we can break the fever and he stays fever free until surgery time. Fast forward to 4 am today and back up to 102 we go.....5 am...98.6. Confusion is setting in and we can't figure out where the fever is coming from and if they will pull the plug for sure or not. At 1 today the surgeon comes in and says it's to risky to perform this major of a surgery with a potential of anything already going wrong in his body. Which we totally agree with, but it stings...big time. They can't get him back on the schedule until Tuesday...so here we sit. We haven't even had time to figure out the logistics of how we are going to do this, I can't even think about how long this will keep me from Alex and Jack.....we haven't even really told him what's going on yet....

XO
K

She's 9....

2010-10-18T19:11:00.003-04:00

I swear she knows more then me...seriously. Sometimes she looks at me and I think how can she only be 9, is that possible?! I didn't have any idea 9 years ago when they said....your having a girl how important her birth order would be.
At 9 she can..

Turn oxygen on and put a nasal cannula on her brother
Burp a g tube
hold a puke bucket (this may not seem like a big deal but when your 9 it is..)
disconnect Kyle's g tube from his ferrell bag
give a breathing treatment
take a diaper off
take TPN off an IV pole
untangle numerous lines and tubes
protect...love...and respect her little brother
Say good bye to half her family for who knows how long and only let a few tears slide out....

She is amazing, she loves and hurts just like so many other children...but the level of that love and hurt is so much different.
I worry sometimes if we are doing her right, if we give her enough, if we show her how amazing we know her to be....and then tonight as we skype and I see her sweet face cheer that her brother lost his first tooth tonight, I realize that somewhere, somehow we are doing right by her.

As for Kyle, he goes inpatient tomorrow morning and we start a full day of testing....surgery is still scheduled for Wednesday. Nervous...petrified....it's a very big day for all of us...

XOXO
Kate

jumbled

2010-10-04T20:05:00.002-04:00

This is one of those post where I start and I'm not sure If I'll finish it or not....

My brain is fired, my heart hurts and I wonder why?

Our little Kyle is still inpatient, the good news is that his 24 hour cultures are negative. The bad is that his temp is literally all over the place. We have had to realize and accept the vomiting and constant reflux. We know we have no chance of getting that better until we hit Columbus. At this point all we are doing here is maintaining Kyle, trying to put out fires and get him safely to Columbus is 2 weeks...we learned yesterday that on top of everything else part of his left lung is collapsed because of the hernia in his esophagus. That's probably why he is requiring the extra oxygen and breathing is so hard on him. I have that Mommy gut...the one that tells me we are missing something, but I don't know what?! If the cultures stay negative by tomorrow night, we are hoping to come home by Wednesday....the hard part is that if any fever comes back, we will have to head right back in.
Amazing....he just keeps going. His strength is inspiring and uplifting. He continues to teach me so much.
I sit here and I can't control the emotions that I feel, I wonder how much we can all hurt, how many times I can watch him in pain or be scared and not be able to fix that....every time I almost feel a little of my sanity slip away, I'm his Momma....we should be able to fix the boo boos...what happens when you can't...how do cope with that?

XO
Kate

Rough week

2010-09-29T17:09:00.003-04:00

I hate when I go so long that I don't know where to start. I should start with the passing of sweet Sammy Knight...but I can't seem to get the words into print. When I heard of Sammy's passing...(his amazing Momma sent me a text in the middle of the night, worried I would hear or read about it from someone else) it hurt so badly that it took me a while to come to terms with it...I had to wake Mark up and read the text to him numerous times before it fully sunk in. It hurt for many reasons, some to painful to get into....but what hurt the most was how this amazing, full of life inspiration could no longer be on this earth...how was that possible?! It made me go back to that dark place where I find so much anger at God...

As the weekend moved on I found myself trying so hard to get coverage for the kids so I could get myself to Houston for Sammy's funeral. I so badly wanted to be there to support Missy. On Sunday am Kyle woke up in the early morning vomiting badly with a slight temp. We really thought he had some sort of stomach flu and we started watching him closely. When his temp hit 102.6 on Sunday afternoon I realized that we had to hit the hospital. We were admitted and cultures were drawn. At this point he was in bad shape and it was becoming clear that this wasn't just a stomach bug, although I kept telling myself it could be just viral. I think in my heart I knew we had a line infection. When the cultures came back positive on Monday I don't think any of us were surprised. Because Kyle was needing more oxygen to maintain his sats we did a chest x ray...I could tell when the team came in something was up. His lungs looked ok on the x ray but what was troubling everyone was that it looked like his bowels were once again herniated (I'm not even sure that is a word) into his esophagus. I can say when I heard this I felt like vomiting. Clearly realizing that this would once again complicate his next surgery, not only do we have to fix that pocket that's forming in his esophagus and try to reverse the way his anatomy is plus also place the J tube, but now we have to fix ANOTHER hernia. They also told us that they really are convinced this is all mito and that we need to get to Columbus and figure some things out. We have our dates for Columbus and we will be meeting with surgery, gi and the mito specialist there. His surgery is scheduled for mid October which means we will be in Columbus for his birthday and probably Halloween. I'm not sure Mark or I have actually processed all this yet...we are so focused on clearing his line that we haven't totally come to terms with everything.

I know this is choppy and written terribly...I'm exhausted...worried and heart sick that Kyle will have to undergo another major surgery so far from home.

XOX
K

the little things

2010-09-21T20:44:00.003-04:00

Since Kyle has started school I find myself overwhelmed numerous times a day with the little things....

~Kyle trying so hard to dress himself in the morning because he is so excited about school. (with a TPN backpack on this can be difficult)
~Kyle making sure I packed his "lunch" so he can eat with the other kids at school
~Kyle pacing in front of the door waiting to hit the bus...then RUNNING down the driveway to meet the bus
~Kyle turning around and telling me he doesn't need me to walk him up the steps of the bus.....big sigh.
~Kyle going to school....making friends.....bringing me art projects, having music class, gym class, and did I mention making friends...his class is filled with amazing kids, who like Kyle for Kyle...
~Kyle coming thru the door and when I ask him how his day was....he says "awesome"

We have been battling a nasty bug that has now officially hit every member of our family, with Kyle of course it's always so much worse. He's tired but so incredibly happy....
Still no date from Columbus, it's starting to make me twitch a little...we need that date. He needs some relief...it's like a ticking time bomb waiting to go off....

We are starting to plan Kyle's 6th birthday party...I say this every single year....I didn't think sometimes he would see 1....so ever year after that I am so incredibly grateful for....we have much to celebrate.

XOXO
K

Kyle

2010-09-02T19:08:00.003-04:00

What a day...I find myself again at a loss for words. I wonder sometimes where the strength comes from. How he picks himself up everyday and no matter how tough our night was he soars above it... I have to say I was worried, at 4 am this morning as I held the bucket to his face I thought...there is no way he's going to be able to get on that bus. But he woke up with a smile and literally jumped out of bed. It wasn't the smoothest morning...Kyle of course struggled to the point of I was silently praying (yes..me praying) that he could just get on the bus and make it to school without vomiting! He did! I got lucky and was invited into his class to talk about Kyle...it was so neat to be able to see the kids in his class and answer their questions!

He only made it 2 hours today....it was brutally hot and that's a bad thing for him. But he's still glowing, still talking about how awesome his teacher is, and keeps asking when he can go back!! Thanks Nurse Merydeth for making all this possible....thanks for helping me let go just a little and thanks for loving Kyle.

We are not having much success with his feeds, trying a new formula tomorrow...really hoping we see a difference. For now though the hope is still alive.

Kate

Hope

2010-08-20T08:26:00.002-04:00

I had to wait two days to blog about Wednesday. If I didn't this post would have been filled with way to many emotions and I just couldn't go there. Now that we've had a buffer day I feel more level headed. Taking Kyle to the hospital for anything is hard on all of us....and by all of us I mean our entire family. Alex and Jack always have 100 questions and Alex always gets this look of fear on her face. For Mark and I anytime we have to watch our baby rolled into the OR and put to sleep it's beyond painful. We know that with Kyle nothing ever goes the way it's supposed to and we usually get some bad news during this process. I have to say Kyle was nervous this time, he asked us a few times if this was going to be like last time (his last major surgery) we reassured him that is wasn't that this would be quick but that he would wake up with a tube in his nose. The tube was super important and it would hopefully help us get his tpn hours down a little. I have to say he was totally cracking us up on the way to the OR, this kid knows the drill and was asking for the white sleepy medicine.

We expected 30-60 minutes of wait time, a quick scope and tube placement....after an hour we started to get nervous...once we hit 2 hours we knew there was a problem. His dr came out and the look on her face said it all.... The tube could not be placed it became dangerous to keep trying, his lugs were not happy and they had to re intubate him 3 times....steroids were given and breathing treatments started. His anatomy is to complicated and they couldn't get the tube far enough down. They also discovered a pocket located and attached next to his esophagus where spit and bile are pooling and this is why he's vomiting so much....

So where so we go from here, Monday we'll be admitted and Kyle will have a blood transfusion....he's not making the blood he needs and now is severely anemic. Next Friday we head back to the OR and a new team along with Kyle's GI dr will try again to get the tube inserted. They are promising nothing but we have to try again, Columbus needs this info to plan our trip there....if we can get feeds started this is major for us and for Kyle...if we can't....well we are not going there for now. We just aren't.

Kyle's had a fat lip and a bloody nose, vomiting alot and overall sad since Wednesday...We are trying so hard to keep him comfortable, happy, safe...I feel like we are failing him on all fronts. I can't go inside of him and fix his body.....it's horrible to be able to do nothing to bring comfort to your child.

This weekend we are just hanging as a family and trying to keep Kyle and the other kids surrounded with love. We still have hope. After a phone call with Kyle's dr late at night last week she said, are you giving up? You sound sad. I let her know I will NEVER give up on Kyle, never...but am I sad....yes. Very sad. But I still have HOPE, and I will have hope even after they tell me not to.
Kate

Balance of Life

2010-08-15T08:35:00.002-04:00

I have written before about juggling one sick child and two healthy ones, it's a constant struggle to keep our family in tact while keeping Kyle safe and Alex and Jack stimulated. We spend ALOT of time at home....that's Kyle's safe zone, I have everything here I could possibly need for any crisis that he could have....and sadly his crisis can come on fast and violent. Sadly the other two kids alot of the time are home with us and while it's nice to keep us all together it can take a toll on them. Both Alex and Jack know nothing different then living life with their brother, Alex was only 3 when Kyle was born and Kyle was only 17 months when Jack came along. They never complain about it but when things come up and they get to go, they are so super excited. The amazing thing about when the kids are not together is that they are constantly calling to check on their brother and me.....this weekend M took the kids to the lake and Kyle and I stayed here to spend some time together...its been an amazing weekend for all of us. The kids and M are having a BLAST, and Kyle (while really not feeling well) has had his Mommy right beside him all weekend (if you know Kyle you know this would make him VERY happy) We have been working on some things that he will need to do to go to Kindergarten (his mother is still not ok with the whole K thing, but he's over the moon!) He's in full countdown mode for K...I'm so scared that his energy level will be so poor he won't make it but I have to let him try...it's not about me anymore, it's about letting him live life to the fullest as much as we can. That my friends is far easier said then done.

Last night Kyle came out into the kitchen and asked what I was making for dinner, since the kids weren't home I had made myself a bakes potato, so I told him I would split it with him....he climbed up to the table and started to cry....I asked what was wrong....and he said, Mommy I'm just sooo hungry. :( He wants to eat by mouth so badly.....it almost broke me....these are the things that are getting harder and harder for me to stomach.

I'll be back soon with updated pictures!
XO
K

Unreal

2010-08-09T08:32:00.002-04:00

It's unreal that I've gone this long since updating....I guess it's good to know that if things were bad or we were in the hospital we would be updating more. Things are still the same...same issues, no word from Columbus yet. I know that there is alot to organize but we need a date...there is so much to figure out once we get date that I know my anxiety will be better once I get that date. Kyle is still having the same issues..although since last week he's been struggling with his lung issues and it's concerning. His iron levels are really low and it seems like he's losing blood from somewhere, we have given iron infusions and he's not getting the bump we need from it. His energy level is low and the anemia is clearly causing him some issues. We head back to MMC on the 18th for a scope (to try to find the source of the blood loss) and also to insert an NJ tube (which will make Kyle very angry when he wakes up and has that in his nose) the hope is that we can thread that down far enough into his new anatomy and we can try to feed him that way. This will give us a good look at what his bowel is now doing since his surgery. We can not feed thru the stomach but are so hoping we can if we can get the tube down far enough.

The last week was spent with amazing friends that traveled so far to see us! It was probably the best week we've had in years. I have to say that for weeks I hoped that Kyle would stay well enough to just get thru the week...he did amazing! He did far better then I could have hoped or expected! We were all spoiled rotten and I have to admit it felt really good! :)

Now it's back to reality and trying to get Kyle ready for Kindergarten...oh....that's a blog for a different day.

XOXO
K

Mommy brain

2010-07-16T16:52:00.004-04:00

When you have a sick child you do what needs to be done, I can say at times I don't think about what I'm actually doing until after the fact, things that no mother should ever have to do to their child. When Kyle was in PICU a few weeks ago and the PICU dr was explaining some things to me I totally lost it, which if you know me well is actually unusual, I have gotten pretty good at stuffing these emotions and waiting until Mark and I are alone to lose it....but as I explained to the dr....my mommy brain is tired....my medical brain understands the things that need to be done to keep Kyle with us, but my Mommy brain aches and hurts. For years I really felt like I could hold on to those emotions, the Mommy emotions and shut them off....lately that seems impossible. Everything seems to hurt, and when it's not hurting I'm angry or sad.

We are still at home, and for that I'm incredibly grateful. Kyle's blood numbers are still dropping which isn't good...we are waiting for some OR time to go in and look and make sure there are no obvious reasons as to why the numbers are dropping. We are still messing with med dosages and hoping we can find the right combination to control the vomiting better and to be able to start feeds again, so far thats a no go. Still waiting on Columbus.....it's hard to wait with Kindergarten looming over us....my panic over that is in full force. Although Kyle is beyond excited.... :)

I need to address some questions we have gotten over the last few weeks. Many have asked about a transplant for Kyle.....I should say that we are in no way looking at that right now, we have a long way to go before we get there, many more options to try....while it may seem like we are at the end we aren't...a transplant is the end card one we hope to never go to. For Kyle he would need a very in depth and complicated transplant. His entire bowel, colon and stomach are all affected. We have been told the likely hood of him surviving that are not high and so for us we will keep fighting and trying until they tell us there is no hope. We know that at any day we could lose Kyle, that is something that we live with daily...we try very hard to not let it rule our lives but it's hard. We are working with the palliative care team at the hospital which has been helpful so far....we are doing everything we can to make Kyle's life as happy and normal as possible. We do as much as we can at home and are so lucky that his dr's trust us to care for him in the capacity that we do. I want to stress that Kyle is stable and safe, but he does have a life threatening condition and that has been a difficult thing to swallow.

I'll admit, I'm struggling. I don't want to go back to Columbus, it petrifies me. What we'll hear, being away from Alex and Jack and our family. I struggle daily with how to keep explaining to the other kids why Mommy is always away taking care of their brother....as amazing as the kids are this is horribly hard on them to. We won't leave Columbus until Kyle is better, at this point we need the best of the best.

I don't know how to thank people any more...I say thank you but I feel like it's not enough, the kindness that is shown to our entire family is overwhelming and so appreciated. It's been hard to admit we need help..

XO
Kate

Still here

2010-07-08T20:01:00.001-04:00

I was quietly prodded today to give an update...which I have wanted to do for days but just haven't had the heart to do it We are still the same, at home and trying to stay here, are days are very up and down and I find myself so incredibly grateful for the small moments of time that Kyle feels well and is happy...

We are moving ahead with Columbus again and are waiting for a date from them to come back.

Instead of a big update please just remember to keep our Kyle close to your hearts..please.

XO
Kate

home and exhausted

2010-06-21T19:43:00.002-04:00

I haven't had two minutes to get on line...Kyle came home Saturday afternoon and it's been non-stop since then. But I did want to jump online and say that we are home and safe...trying very hard to get into a routine and once again find our new normal. I promise to be back soon with a full update on where Kyle stands and what our plan is...

But for now, please know how much we appreciate the love and prayers that have been sent our way...

XO
Kate

Day 23

2010-06-17T21:00:00.002-04:00

Kyle seems to have finally recovered from the line infection, his new line is working well in his chest and tomorrow it will be tunneled and transferred into a central line. He is still vomiting and having belly pain but sadly it seems this is how it's going to be for now. That in itself is hard to process for us....we haven't really come to terms with what all this means for Kyle. Coming into this surgery we were so hopeful....now we feel worse than before. These last few weeks have been so horribly painful...yet I'm not sure either Mark or I have had two minutes to really think and absorb them.

It's very hard to think about what's to come....

Please keep Kyle once again in your heart and minds tomorrow am he will once again have to go under and be on the vent for the 4th time in 3 weeks...

XO
Kate

quick update from icu

2010-06-14T08:47:00.002-04:00

I don't have alot of time but I wanted to update quickly. Kyle's temp went way up again last night and he had increased pain so we were moved back to the ICU. Kyle was intubated and given a CT scan to check for any leaks or other possible issues in his bowels. His CT scan was clear which is great news. But his blood cultures were positive for a blood infection which is not good. We have pulled his PICC line and placed 2 periferal lines in his legs (over 20 sticks to get 2 lines) We are concerned that the fevers are still high but he's being closely watched. We will update later tonight. I haven't slept since Friday night so while he's comfortable I'm going to try to rest a little.

As always thank you for loving our Kyle.

Xo
Kate

It's me

2010-06-13T12:40:00.002-04:00

It's me God...yah the one who swore I would never ask you for another thing...the one that goes through my MIL and my Mom who are up there in heaven....the one who prays daily to those two incredible women, the one who basically begs them to turn something in Kyle's favor.

I am now pleading with you, in my head and in writing to please stop the madness....I don't understand any of this, can't begin to wrap my brain around 5 years of hospitals and pain and heartache. I know that I am grateful for Kyle and his fight, it's taught me more than I ever needed to know. But enough. Now we are dealing with a high fever and more pain....Kyle is beyond tired but yet still smiles and tries to be a 5 year old boy. God..you've made every and any point you have needed to make, we get that life is precious and short, that it should be valued and loved. We get that there is nothing we wouldn't do for any of our children, we get that our children love each other more deeply than anything I thought possible. We get that we need to respect and love others.

So I now ask you, pray to you that you give our Kyle a break, so that he can be 5 and go home and play with "his kids". Please.

XO
Kate

in and out

2010-06-10T20:25:00.002-04:00

I find myself trying to slow my breathing down...I can hear myself in my head saying in and out, in and out...like if I don't I will hit the floor and not want to get up....things are ok here, nothing major happened today I think because things have been calmer I am starting to look back over the last two weeks and it seems so incredibly sad and hard for me. I try hard not to mince my words on here, it is my outlet the one place that I can be honest and open....but I haven't been able to truly put into the word what our Kyle has been going thru in the last 2 weeks...the words just are not there. There are moments of time that seem lost to me, like I have blocked them out...to painful to remember....I am trying to move past them and take it day by day, hour by hour like his dr's have told us to...but as a Mother that's hard...I think of the tomorrow's, I can't help myself. It's hard to live hour by hour...it's hard to not worry what's around the corner.

We have so far to go, but we are hoping to get home for at least a little bit of time....Mark and I have so much to figure out...choices to make....we will be going back to Columbus we do know that. As for timing that's all up to our Kyle's body...it's all on his schedule.

We as always are so incredibly grateful for being Kyle's parents....we didn't just get blessed with Kyle...we got blessed with Alex and Jack...and our family, and friends....and Kyle's incredible team of Dr's and nurses...who love our Kyle just as much as we do.

XO
K

the facts

2010-06-09T08:00:00.002-04:00

~ Kyle is refluxing or vomiting every hour on the hour...sometimes as often as every 20 minutes.
~ His motility is in reverse right now (meaning instead of heading downstream it's heading up)
~We can get nothing into his g tube right now without him vomiting it up
~We are waiting for some direction from Columbus hoping to have that today
~We are beyond sad and have no idea what this means for our sweet boy
~Kyle is super at risk for aspiration into his lungs right now....major concern for us
~He is exhausted and very grumpy, won't acknowledge most people. We are very worried about his mental well being
~ This is all alot for us to handle, he's 5....he knows to much but not enough, that is a very hard combination
~We are all settled into the Children's Hospital and out of ICU! :) His room was completely decorated in Thomas stuff when we got here.....I have to say that the staff here is beyond amazing and take the most incredible care of all of us. If we have to be in the hospital I wouldn't want to be anywhere else.

I go from being incredibly sad to incredibly angry to incredibly grateful. My mind and body are so tired but I swear I'm so damn happy that we have made it thru the last 2 weeks I honestly questioned a few times if we would. But I tell you our Kyle's spirit and will are inspiring. He is beyond tough....

XO
Kate

still here

2010-06-06T19:47:00.002-04:00

...in ICU that is. I don't even know where to start and I do feel bad for saying that I'm to tired, sad and frustrated to get in to the details...but I will soon...I just wanted you to know that we are still in ICU, that Kyle is stable and he is so brave and so strong. Nothing is going the way it was supposed to....it seems like something else goes wrong every day....it's hard to not get sad and discouraged....one of Kyle's nurses said to me today.....it's amazing your not bitter.....My response was one that I truly feel...how can we be bitter, we are still fighting, we are the lucky ones.

XO
Kate

update day 8 in ICU

2010-06-02T12:23:00.002-04:00

I'm sitting next to Kyle who is for the moment sleeping so I'm trying to muster up the energy and the brain power to write an update.

The last few days have been beyond terrible, Kyle has been in horrible pain and his lungs have been really bad. Yesterday he was taken downstairs and they did some testing on his belly and a contrast study to make sure his new anatomy was still all hooked up correctly. The good news is that it is and that they saw no blockages.

The really bad news is that they put contrast into his belly and watched it empty out his belly, go down into his bowels and then go back up the other side all the way up his esophagus. Which was supposed to be impossible. This does explain the vomiting, the lungs and what we knew was reflux. They inserted a tube down into his esophagus that is now light suctioning all the bile out so that he 's not choking on it and aspirating it anymore. Since they did that he has been in alot less pain...which is wonderful but it leaves us with a very big problem. How do you fix that? We don't know....the options are not good and without getting into my heartache to much right now Mark and I are sick over this.

So for now we wait and we try to keep him comfortable and healing....his mental state is still not good but we are seeing little bits of our Kyle coming back to us. He will stay in the ICU until we can figure some more things out.

Please continue to keep Kyle in your thoughts and prayers....he is not out of the woods yet...

XO
K

update

2010-06-01T20:17:00.004-04:00

I know that I need to update but I can't. I just need to say that Kyle is very stable and has been finally given the right combination of meds so that he can rest. We have been up straight since 11 pm last night and he is in desperate need of sleep. He was put under today for more testing and we don't have the full results. It was a horrible day for him and I just can't wrap my brain around all of this. I will update tomorrow after we fully understand everything.

Thank you...for loving our Kyle.
K

hurt

2010-05-31T11:33:00.002-04:00

I keep saying in my brain day after day, I can't do this....it physically hurts to watch this....my heart is literally aching and my head is pounding....he looks at us with pain and such sadness and we can do nothing. I realize before anyone jumps that we will continue to do this, to fight for him but there are those brief moments where my breathe is gone and I question if I'm strong enough to keep watching this.

Kyle is pretty much the same as yesterday, pain and lungs are still a large issue...still in the ICU....he will have a contrast study done tomorrow to make sure his new anatomy all looks good still. There is a concern that when Kyle is complaining this much there is always a reason. We are becoming very worried about his mental health, he is very sad...no strength....we got him into a wheel chair and went up to the Children's floor to try to get some happiness into him, it didn't work but I'm hoping it was just enough to keep his spirit going. He is missing "his kids" and wants to see them so badly. I know once we get upstairs and they can come in that will help him so much.

I need to keep saying that our Kyle is strongly then any adult I have ever encountered...he continues to amaze us with his bravery and kindness....

XO
Kate

Day 5 in ICU

2010-05-30T07:14:00.002-04:00

I don't have any other title at this point, it seems like each day we think , so yesterday was bad but we got thru it and today will be better....we thought after Friday's emergency surgery that things would improve...we were very wrong. Saturday morning brought lots of pain and discomfort, after another trip from our good friends the anesthesiologist Kyle was able to rest for about 2 hours....and then it went very down hill. He started to gag and then started to vomit large amounts of bile, (Kyle has never vomited in his life he has always had a Nissen wrap to help prevent reflux) his sats dropped to the 40s and he was blue...it took over 15 minutes for us to get him back under control and by that point he had aspirated the bile and was really struggling to breathe...it took hours of back to back neb treatments and lots of extra o2 to see some improvements, it was one of the worst incidents with Kyle that I have ever seen. I had this horrible feeling that we were going to lose him.
We are still having lung issues today but I am so hoping we are over the worst of it, the hard part is we don't know if it's going to happen again. So clearly we won't be leaving the ICU today...We will see the surgeons and GI again this morning to try to figure out why this happened.

Hoping for calm and peace for Kyle today, he's gotten more pain meds and they put some additional pain control in his epidural. Will update tonight.

Kate

Feisty

2010-05-28T20:38:00.002-04:00

There is a long standing joke between us and some of Kyle's medical team that he is "feisty"....he is very strong willed and has been since birth, we say all the time that this quality in him has carried him thru some of his toughest challenges...today I was once again thankful for Kyle being feisty. Since he came out of surgery on Wednesday night he has been in almost constant pain. He has been telling us for 2 days that the pain was horrible and that he was "sick"....

This afternoon during a bed change I looked down and saw stool coming out of his G tube..the tube connected to his remaining stomach. Major scary red flag, his temp was way up and his pain was unmanageable. The surgeons were by his bed quickly and we were told that he may have a leak somewhere and his stool was leaking from the colon....this is very dangerous and life threatening. He was brought into surgery and it was discovered that the section of bowel where they placed the J tube had collapsed and was obstructed. They had to remove the j tube which is a concern but this was a much better problem then what we thought.

He is now back in ICU and is comfortably sleeping.
My head is so foggy and my heart still hurts....but I am so incredibly grateful that our Kyle is feisty and we still are fighting this fight.

XO
Kate

A fog

2010-05-27T19:52:00.003-04:00

The last few days have been a total fog, we went into surgery hoping for one outcome and we got a call from the OR 2 hours into Kyle's surgery with a different plan. The pledgett/mass of surgical material that was in Kyle's esophagus had attached itself to his liver, stomach and the lower half of his esophagus it was completely embedded and had destroyed the top half of Kyle's stomach. There was no chance to save the tissue and so they had to detach Kyle's esophagus from his stomach and attach the esophagus straight to Kyle's intestines. His stomach is now completely bypassed. This was bad news to us, clearly. The news was shocking at first and then we had a chance to process the news and we are trying very hard to see the positive side of this...he will have NO reflux at all which is really good news for his lungs. We are hoping that this may cut down on his stomach pains (his stomach is still there and does still empty into his intestines) They did put in the J tube so he now has a G tube and a J tube...2 tubes on his tiny belly. His body is very swollen still and we are still struggling with pain issues. He went thru so much, so while we are prepared logically for the pain the reality of the pain is so hard to watch.

We feel overwhelmed and heartbroken that Kyle is in so much pain. We keep hoping that every surgery, every test, every new medication will give our sweet boy some relief....We are keeping that hope and faith alive that this will all be worth it for him....that this is a new beginning for him. The next few days will be rough but Kyle as always continues to amaze us.

XO
K

Update from the ICU

2010-05-26T22:18:00.002-04:00

It's been a long day...I wanted to jump on and thank you all for the prayers, and love and continued support that you show our family. I will be updating in the am with a more detailed post, surgery did not go the way we had hoped but I do want to get more details and understand some things before I post them. Kyle is in the ICU and is in and out of sleep, he has some pain and is extremely swollen but he is doing as well as can be expected. His temp is up so we are watching that closely....

Again..thank you...our sweet boy is beyond brave. His spirit and love continues to amaze us every day.
XO
Kate

Quick Update

2010-05-26T20:11:00.001-04:00

This is Carissa updating for Kate -

"He's out and stable. We haven't seen him yet but he's in the ICU and doing well."

It has been a very LONG surgery and day for all of them. Please keep them in your prayers. Kate will update more when she has time!

Moved to Wed

2010-05-24T17:20:00.002-04:00

Just a quick update, due to an emergency with another patient Kyle's surgery was moved to Wed. The big bummer for Kyle was we didn't find out until after we were at the hospital and ready to go...We have lots of mixed emotions but we are going to take advantage of the next 2 days and enjoy them.

XO
K

Not ready

2010-05-23T09:33:00.004-04:00

I have realized through this 5 year process with Kyle that no matter how hard I try I can't stop time, I can't freeze it....So many times this weekend I wanted to do just that, slow down the time, make the days longer. But at the end of the day I know that Kyle needs this, he knows he needs this....he pulled out his suitcase this morning...ready to pack for tomorrow. We have spent the weekend together, doing things that normally we would probably shield him from, like swimming...I was a wreck petrified he was going to slip or something, but he was so happy that it made it all worth it. So this is short, I'm off to play wii with the kids! :) One of my bf's will be updating the fb page and this page tomorrow....as always thank you for your support, love, thoughts and prayers.

Oh and yes..the goggles are missing a lenses, but he didn't care, he just wanted to look like his sister! ;)

Wordless Wednesday

2010-05-19T14:02:00.002-04:00

Sleepy Ramblings.

2010-05-17T21:03:00.005-04:00

I am tired. Should I start a blog like that, I'm not a very good blogger...(do you know they have "rules" for blogging) my guess is I break all the rules, I don't update enough, my writing is horrid, I never edit my pictures...the list goes on and on. I actually had someone tell me how I could be getting more people to my site, more hits, more interest....crazy huh?!

I started blogging 3 years ago, isn't that a long time. I started blogging in a wonderful safe place surrounded by other Mom's with sick children. It was the only place I felt safe to be me. I noticed that now that I blog here I am more guarded. Why?! I sometimes think I am to scared to put the hardest feelings out there, worried about others reactions.

But tonight's its a necessity, We are in the countdown for surgery. Next Monday at 8:30 am Kyle's 14th surgery will begin. I'm sick over it. Literally. I'm grumpy and stressed and feeling pressured to do more for him, love him more, snuggle him more, breathe him in more, rub his face, his arms, his legs. I find myself telling him over and over that I love him, that I'm proud of him....I'm petrified that something will happen to him and there will be no more me after. No more listening to his sweet voice, no more laughing, giggles, hugs. During every crisis someone will say....you have two other children you will survive if something happens to Kyle....but they seem to not understand that we can't replace one child for another....that my connection is different, my entire day surrounds his needs....they have for the last five years....

Kyle is sick, horrible cold, that needs to be cleared up by this weekend or surgery will have to be postponed. Which at this point would be very difficult. He needs the surgery...badly, we aren't moving forward only backward. Our Kyle....needs this.

Love

Wordless Wednesday

2010-05-12T07:47:00.002-04:00

Kyle's in Guam

2010-05-11T07:21:00.001-04:00

Ok...well not literally....but check it out! http://twinbittersweetmemories.blogspot.com/

Mommy

2010-05-10T07:08:00.002-04:00

8 years ago when I became a Mom I read all the books...searched the Internet....asked tons of questions. I was so ready for a baby. The first year had it's ups and downs but Alex was a perfect baby. (she was and I'm not just saying this because she is mine a text book perfect baby! Although trust me, she's making up for lost time now) After all the reading and the questions and the Internet search I was not prepared for how the kids would make me feel. I don't think anything, anyone can prepare you for what happens when you become a Mom. I love Mother's Day...really I probably drive my family nuts in anticipation of it.....but it's not because I want a day all about me (;) although come on it rocks!)....Mother's Day makes me slow down, the normal day stops and I have time to really look at my kids, listen to them a little more, snuggle them more, love them even more. It's a day where I let everything else go and take the time to realize how incredible life is, how incredible it is to be their Mommy. What an honor.

Our life isn't easy, it seems to get harder and more crazy every week.....but I can't imagine life without these 3 beautiful babies. My heart aches when I think about what each one of them has been through, but they are strong, and loving, and kind. Amazing.

XO
Kate

This face....

2010-05-06T18:38:00.002-04:00

There is something about this face that makes me melt....

Kyle and surgery

2010-05-05T07:12:00.011-04:00

Yesterday was our last GI appt before Kyle's big surgery at the end of the month. It was emotional....our GI is amazing and she always fights for the best for Kyle, I trust her fully and her advice and opinion matter greatly to us. She's nervous about Kyle's surgery....we all are.

Kyle's surgery will have 3 parts to it, he's getting a permanent J tube, which will be right below his G tube, at this point the J tube is our only chance of getting Kyle off the TPN. His PICC line will be removed and a central line will be put back in. We have mixed feelings on this, I like working with the central line better (it's more secure) Kyle has a bad habit of getting infections with his central lines. So we'll have to see how this one goes. The third part of his surgery is his esophagus, he has a fistula (two tracks) that leads into his stomach, so instead of having one opening into his belly he now has two. This is from surgical material that eroded his esophagus and has planted itself inside of his esophagus instead of on the outside. This is pretty major and could cause the most complications. He could lose part of his esophagus. I feel sick over this and I am very concerned about this part of his surgery.

We started talking to Kyle this morning, just casually that he will have surgery soon and will have two tubes instead of just one, of course that sweet boy just wants to know if the surgery will make his belly stop hurting...he continues to amaze me with his strength and spirit. After 13 surgeries he would have every right to pitch a fit and be upset....but not our Kyle....his eyes were so bright this morning....amazing how you can get strength from the littlest person. I am so proud of him.

In other news, we did our March for Babies on Sunday..it was beyond amazing. Because of so many of you I passed my goal and it felt so good. We walked with family and friends....who I hope know how much I appreciated them coming out early on a Sunday and walking 5 miles! :)

I am attaching a picture of our shirts, we are starting a new fundraising for the March of Dimes Share your story website and Angel Flights, all our proceeds will be split between these two charities, if your interested in a shirt.... you can order one at TeamKyle2004@gmail.com, they are 25.00 and shipping is included, please include your address and size of shirt (we have all sizes)...

Love

Coasting along

2010-04-28T10:10:00.002-04:00

Day to day...hour by hour at times...coasting....waiting....I feel like we are truly living day to day...Kyle has been so up and down that I'm finding it hard to keep up. He is still on the IV steroids and we are concerned that this might be the best we can get his lungs until surgery. He's getting tired very easily and complaining of his "breathes" as he calls it. His color hasn't been great and he is back on O2 more....which he is ok with...(this is both good and bad) Still on the 20 hour tpn...which he also has been pretty good about. His blood sugars have been to high which is a concern and we are hoping they will get better after he's off the steroids.

It looks like surgery the second week of May, it's a compromise between his GI dr and pulmonary dr...GI wants the surgery now, while pulmonary is more cautious with his lungs. At this point I'm not sure how I feel, so many emotions about this surgery...my brain is having a hard time processing it. I don't know how to prepare him for this, he's 5, he's smart and this will test his limits...I think it will test all our limits.

Jack and Alex are good, so patient.... Gosh I wonder what I would do without them...

Love

Yesterday

2010-04-22T07:31:00.003-04:00

Kyle's test went smoothly with no big surprises. Things pretty much looked the same way they looked when we took a look in Columbus....which is good. Moves us one step closer to surgery. At this point we are in the one month countdown. As well as things went yesterday, we are paying for that today, last night and today have been rough on our little guy....you just can't put that much liquid into a stomach that doesn't work...it increases his pain level to an all time high.

Today we are off to Mimi and Papa's house to visit with my sister and her little ones, the boys are over the moon about it! Should be a great day!
I'm hoping to take lots of pictures!!
xoxo
Kate

Trying to move forward, yet feeling stuck

2010-04-20T19:55:00.002-04:00

I should start this by saying we had a great weekend....we all got some sleep, we loved on the new puppy, we hung out as a family...it was great. The only issues have been the on going issues with Kyle's lungs. Any exercise or activity is leaving him winded and in need of extra oxygen and a treatment. We saw pulmonary today and he was not very happy with Kyle's lungs and energy level. It's another week of IV steroids and an additional 3 days of antibiotics...all of which play havoc on Kyle's body. Basically it's another week of 22 hours on the IV. It's hard to explain that to Kyle, I feel like all I do is try to reason with him....I try to keep it fun and I'll admit I bribe him, anything to stop the tears from falling. We now start the countdown of a month until surgery, he has to stay healthy or we have to start over, his pulmonary dr is concerned that since he is refluxing this may be the best we can get his lungs...which is a big concern...his surgery is a big one, he needs to be perfect. Him not being perfect is a very scary feeling.

We head to the hospital in the am for an upper GI, the one test that Kyle hates...it's going to be a long morning and I know we will both be happy when it's over. Hoping we don't see more reflux then before and hoping that we don't see any major red flags that would force us to move up surgery.

On top of that Kyle's labs weren't great this week...his White Blood cell count is very high...hoping that is not an indication of an infection coming...I've been driving him nuts today asking him how he's feeling, pretty sure he's ready for a break from his Mom. :)

Tonight I'm sitting here in front of the computer and usually the words come so easily to me...tonight not so much. I'm anxious...nervous, I hate to think that I'll feel this way for the next month....yet then I realize a part of me has felt this way for 5 years. The ups and downs...both are extremes, the highs feel so amazing but the lows feel so incredibly low.

Kate

Trying to find the calm

2010-04-14T19:44:00.003-04:00

~When you come to the edge of all the light you know, and are about to drop off into darkness of the unknown, Faith is knowing one of two things will happen : there will be something solid to stand on or you will be taught how to fly~

I stole this quote from one of my favorite blogs...it's an amazing blog full of hope and love and the most adorable sweet little girl named Zoey, her Mom...well her Mom is something else. Strong, beautiful, inspires me to keep going.... you can check out Zoey and her Momma here.... http://littlewonders-heather.blogspot.com/

We've had another tough day...Kyle's TPN is now at 20 hours a day plus all the other meds, he was off of his IV for a little over an hour today, pretty tough on a 5 year old. Our GI dr called and we had a long conversation, none of it good.... it left me feeling horribly sad. M is still out of town so I havn't been able to fully fill him in but when I do I will update more on here.

After a long day I was putting Kyle to bed and he says Momma...your the best Mommy ever...ahhh...this is after blood sticks, and TPN and meds that make his belly hurt....this sweet boy has so much love in him, I know that he couldn't possibly understand the timing of telling me that but I will never forget how it made my heart feel to hear it....because I do try to be the best Mommy to him, I'm not always...I get tired, I lose patience....I mess up....but he loves me. Makes the bad day all worth it.

xoxo
K

Ramblings

2010-04-13T21:04:00.002-04:00

This will be quick...I think ;) It's been a rough night, not any major changes or shifts...just the small things that seem to be adding up. Because Kyle is sick so much he hardly ever complains...if Kyle is complaining of pain or not feeling well, it's concerning. Tonight he was doing both, chest pains again, belly pains again and as I tucked him into bed he looked at me and said...Momma...I'm still sick. His sweet strong face crumpled and it hurt me to my core. Ahhh, breaks me in two. Just came back from his room to check his blood sugars and they are way to high again...something is going on... we just don't know what yet. I'm feeling very concerned. Very worried...I know him so well...something is not right.

Hoping for a restful night and some answers tomorrow.

XO
Kate

Banging my head against the wall...or chair...or anything in my path

2010-04-12T20:00:00.002-04:00

That's how I feel today, I'm feeling the increasing pressure of Kyle's surgery looming and he's still really sick. Back to the Dr today and it's another week of IV steroids and IV antibiotics...back we go to being attached not only 18 hours a day to an IV but 20 plus...so hard on him. Yet I have to keep remembering how grateful I am we are at home doing this...still going strong. Still concerned about his blood, waiting on his labs from today..he's now putting blood out his bile bag at night which is not the best sign...

That's my short update for tonight...I'm off to snuggle with Alex for a bit...

XO
Kate

I know...I know....but if you could see the kids faces...well...that's all it took!

2010-04-10T08:50:00.002-04:00

We totally in love with Jake Thomas....I guess we all needed a boost and this is the one we picked...

A long week

2010-04-08T13:18:00.002-04:00

It seems and feels like the last few weeks have all run into each other, we are still struggling with this nasty respiratory infection (both Kyle and I have it) Alex had a fever on Tuesday....strange...came on all of sudden and then was gone by the am....crazy, I'd say we've been more sick this last month then all winter. I think the steroids that Kyle and I are on are getting us both down and it's been a frustrating process.

We got to meet with Kyle's entire team on Tuesday, pretty much spent the day at the dr's office. But it was good, we got more info from Columbus and got the opinions from the team that knows Kyle best. Have I mentioned my love for Kyle's GI dr lately... Amazing person, amazing doctor. Anyway, we are keeping a very close eye on some of his labs, little concerning this week but we will know more on Monday. As for our meeting with the surgical team, I think that went pretty well, we were surprised by some of the recommendations and not prepared for them but in the end I think it will be the best for Kyle. We are looking at doing both his surgeries in the next month at the same time. It's a good move for Kyle but will make the surgery and recovery much harder. But it can be done all at the same time, so while it will be a hard and difficult surgery our sweet boy will only have to go thru it once.

Both Mark and I have that sense of dread right now, while we know we it has to be done it's still so heartbreaking so think about. I feel like we just went thru this in November and yet this surgery will be more than that one...I'm petrified. I look at his sweet face and it kills me to think of him going thru more....Our baby who has endured more than I will in a lifetime will have to be once again put thru so much. It's hard to wrap our brains around it. None of it makes sense to me, yet in the same moment I'm so thankful, grateful, overwhelmed that we are still fighting this battle....

XO
Kate

Friends

2010-04-05T19:32:00.004-04:00

The last few weeks have been trying, I found myself sick with sick kids and alot of time laying around and do lots of thinking. After a long day today I feel overwhelmed and sad.

I have the most amazing group of friends, god love them. It's not always easy to be my friend...I don't always return emails, or phone calls or text messages. I forget birthdays and anniversaries, I miss engagements and births and sadly deaths.

Yet, they keep coming back...they continue to love me and support me and hold nothing against me.

It wasn't always like this, there used to be so much more time....yet the last few years that time seems to go by so much faster.

So for those of you still hanging in there...thank you...thank you....thank you....this would all be impossible without you.
Love
K

3 weeks and counting

2010-04-05T08:32:00.002-04:00

Kyle is still sick...yah 3 weeks. I say sick...actively sick I'm not sure about. But coughing and retching are still really active and I'm starting to get more nervous. Still on steroids and I see no real big improvements. We have dr's appts all week so I'm hoping they can help. We meet with surgery and GI tomorrow, both appts have me nervous and keyed up. I'll update after those appts.

Easter.....I have to say I was nervous about Easter, both Kyle and I have been sick and neither one of us were up to much. Mark's sister was hosting Easter which was a huge relief and took alot of stress off of us. We went, and I'm so grateful we did. The kids had an amazing time playing with their cousin Ethan and Mark's family is amazing to them. The day was wonderful, beautiful weather and great company...it was exactly what we needed after the last few weeks. Kyle is really beat today but that's ok, it's a down day for us...the giggles that came out of that kid yesterday was plenty worth all of it. Watching him play....watching his face....he truly is a kid at the age of 5 that has learned how to appreciate life and all the small little good things it has to offer.

Alex....oh my girl. My sensitive kid, who clearly had a lot on her mind last night. Lots of questions at bedtime about heaven and death and what happens. It was hard to admit to her that I have alot of the same questions. But I promised her I would think alot about it and her and I would talk soon...so much on her little mind...again a child who is wise beyond her years.

I hope you all had a magical Easter, we did.

XO
Kate

Still sick, is that possible...

2010-03-28T12:10:00.003-04:00

Kyle is still sick, in fact we've all been sick for the last few days. Jack and Alex seem to be getting past it ok while Big is still struggling. I got hit with it in the middle of the night Thursday night..pretty sure when I realized I was sick (while sitting in Big's room giving him one of his every 2 hour nebs) I thought there was a good chance I was going to have a nervous breakdown. I did have a good laugh on Wednesday afternoon, Kyles pulmonary NP called to let me know that all the meds would be delivered to us that afternoon (all his IV meds) and she mentioned that she had talked to the on call GI dr who asked her if Kyle was being admitted....she thank god had my back and explained to her that Kyle only gets admitted if we are going to PICU and that we don't hit PICU unless we are at every hour nebs...it's been our agreement since Kyle came home from the NICU. It's at these times I am so grateful for our dr's...who know and trust us! Because Kyle has been so sick for so long, we know when he needs to go in. I can say while it's hard to make the move to the hospital we always know when it's time to go...luckily we haven't been there this time.

I have to say, and I know I say this alot....this kid continues to amaze me...he's getting so big....he knows when he needs nebs, more oxygen, more meds...almost before I know he needs them. While it's good that he can voice what he needs it's also tough sometimes...he's voicing more about his belly and his lungs. You can see and feel his frustrations.

We should have some more info about his surgery this week...we have a long way to go before he's safe to go under for this, I hate how much this sickness has set us back.

XO
Kate

Sick update

2010-03-25T13:14:00.002-04:00

Kyle has been horribly sick but yesterday's dr's appt went well, we were able to get IV antibiotics and IV steroids, it's been a little confusing trying to get everything run into his line in the right order at the right time, but again I'm so incredibly grateful that Kyle's dr's have so much faith in us and allowed us to do all this at home....it's an overwhelming responsibility at times but again....we are at home. That's huge to us.

I haven't had time to blog the way I like to, and I'm noticing that it's bothering me....but every time I sit down to write I feel overwhelmed and exhausted.

So for now just know that Kyle is amazing, and strong and brave. As for us...we are still living life for today.

xoxo
Kate

sick

2010-03-23T12:22:00.002-04:00

Kyle is sick. A slight cold that has turned nasty and literally thrown his entire system into a tailspin. I'm on the pity train today....not so much for me, I can survive on zero sleep, been doing it for years, but enough is enough for him. Like everyday life isn't hard enough. It's in his lungs, it's shut down his entire gi tract...both his pulmonary dr and GI dr are on vacation. (how dare they go at the same time ;) ) We have started IV fluids in hopes of holding off any dehydration, his output is huge right now...which in a kid like Kyle is normal. His lungs are miserable and we are at every 2 hour treatments...his pulmo and I have an agreement that when we get to every hour it's off to the PICU...until then I can treat this at home. Of course with that comes all my worries of doing something wrong, missing something...harming him in some way. His labs are being drawn today so that will give us a little insight. Until then we keep plugging along and hoping and praying we can stay home!

xoxo
Kate

Happy Birthday Jack...

2010-03-22T16:48:00.002-04:00

Happy Birthday to my sweet baby....who hates clothes, loves cars and will forever be my baby.

Kyle is sick so no time to update for now...

Kate

There are times where he look so much older than 5

2010-03-18T07:49:00.001-04:00

one of our heros

2010-03-17T16:51:00.003-04:00

Pilot Tom and Kyle... Tom came to us from Angel flights Northeast.... Tom is one of the nicest people we have ever encountered. This journey has been so hard on all of us. But I am so thankful there are people in the world like Pilot Tom....http://www.angelflightne.org/ I can't say enough good things about these people. Amazing....

I'll update more later..

xoxo

I got into trouble

2010-03-15T20:24:00.004-04:00

Ok, I never ever pretend to have it all together..in fact if you know me in real life the words..Kate and having it all together do not go in the same sentence. Three kids, a husband, a dog, a house....it at times gets all jumbled together. Alex has had a killer canker in her mouth since last week..poor sweet girl is having a hard time eating. My parents (god love them) picked the kids up on Friday and quickly stopped to get some anbesol jr for her mouth. This morning when she asked me if she could take it to school with her so she could put it on before snack and lunch I immediately said yes...I mean it's anbesol...JUNIOR...sold over the counter (are you feeling where this is going?!) Fast forward to about 11 o'clock today, I'm unhooking Kyle from his TPN...phone rings and it's Alex's school...I go into panic mode thinking crap..she's sick. But no..it's just the school nurse informing me that I broke a BIG time rule at school by letting Alex bring that to school...if I want to do that then I need a note from her pediatrician. She then goes on to tell me in a very stern voice that I would need to come pick up the anbesol and never let it come to school with Alex again. Ok...so here is where I know I was wrong...but I laughed...seriously I couldn't help it. She wanted me to load the boys in the pouring rain to come to school to pick up anbesol...freaking anbesol. Um..no...it's not going to happen. Listen I get rules, I do...I want my kids to understand rules...we all have to live by rules. But this one had me at first ticked and then laughing. Again, I'm probably wrong here but the school nurse was clearly ticked off at me for sending it in the first place...and if you could have seen me..I have on gloves and a saline flush in my hand...trying to not touch anything so that I don't contaminate Kyle's TPN line and she's calling me because I let Alex take ANBESOL to school...

Speaking of Kyle, poor kid had some belly issues this afternoon, not totally sure on why...he was leaking around his tube alot...his lungs haven't been so hot lately, we are guessing it's from the reflux but we'll see the pulmonary dr on Thursday just for a check in. Still waiting to hear from surgery here about the j tube. They were waiting for the reports from Columbus. Hoping we can get this scheduled soon...

We are still way over the moon at being home, trying to get settled and also get ready for Jack's birthday...my baby turns 4 in a week. Seems totally unreal!

xoxo
Kate

settling back in

2010-03-13T14:42:00.002-05:00

We are home and loving it, the boys are right back to where they left off....inseparable and playing up a storm. Alex is back to quietly overseeing them and loving on us.

It feels safe and comforting to be home, I have realized as Kyle has gotten sicker over the last year that my safe zone seems to be home, I find when I'm away I crave it. Everything I could ever need for him in an emergency is here....his little body can revolt on us at any given time and it can be nerve racking to be away from that, even when we were in patient in a hospital I was nervous. Kyle's team at MMC from his dr's to his nurses know him...they know us. I found myself missing that so much this week. You form a trust, a bond with people when you work this closely with them...its hard to re create that.

I've wanted to blog for over a week about the loads of thanks I need to give....that blog is still rattling around in my head so forgive me I know I still owe some pretty serious thank you's...I promise they are coming.

A few of you have asked if we got a "diagnosis" for Kyle while we were in Columbus. We did not....what we got was proof of what we have been seeing for a long time, Kyle's motility, while still slightly there is bad. Do we want a diagnosis....sure we do....but it won't change the way we treat him right now, we are still in crisis mode....he is still TPN dependant and will be for a while. We won't know if he can get off of TPN until we do the j tube surgery. At this point we have no reason to believe it won't work. Until a dr says it's not working anymore (his motility) we will keep thinking positive and moving ahead.

People have been incredibly kind with their words of support to both Mark and I...I thank you for that. I won't speak for Mark....I only speak for myself when I say this... having a chronically ill child for over 5 years does take a toll on you...I wish I could say that for the last 5 years I've been proud of how I've handled every situation that has been thrown at us. If you had told me that at the age of 27 I would have a preemie, watch him almost be taken from me numerous times, live my life in a hospital, watch my sweet baby have over 13 serious surgeries and come out unscathed I would have laughed at you. Again I'm not perfect...there are many things I wish I could change, take back, do over....I can't do that. What I am trying to do is be the best person I can be...which in turn I think helps me be a better Mom, wife, friend and daughter. Where is this coming from your probably asking.....the last few weeks have been tough, I have questioned alot, worried a ton, and felt like life was spinning out of control.
I have looked back on things and realized one thing...I'm not perfect, I make mistakes, but I love my kids more than anything.....whatever happens with Kyle he will always know that we love him and are proud of him. He doesn't care that I'm not perfect, he loves me because I'm his Mom and he knows I will move mountains to get him anything he needs. He will never be alone in any of this.

OXO
Kate

We have some answers

2010-03-12T09:03:00.003-05:00

It's been an overwhelming week. I have to start by saying we are thrilled with the teams at Nationwide...knowledgeable, kind, warm and compassionate. As I said yesterday Kyle's motility in his stomach, bowels and colon is not very good. There is though some movement...which is HUGE for us right now...the chances of it coming back or getting better are not good. The fact that it has gotten worse over time is also troubling...but we can't predict the future, all we can do is live for today...get a plan for today...and make sure Kyle has everything we can possibly provide for him to keep him comfortable and happy. At this point our only hope to get him off of TPN is to place the separate j tube (roux-n-y) and hope we can get feeds started. We won't know about the colon until we start pushing feeds...

As for the esophagus we did see reflux on the study which for Kyle is never good...I knew we would see it. We've seen a change in his lung status so I had a feeling there was some reflux going on. The surgical team said that the surgery on his esophagus needs to happen...when we are not sure. They wanted to do it all at the same time in Columbus but they wanted to study all of Kyle's films from Maine before we come up with a plan.

None of this is easy for us to swallow..our emotions have been all over the place. The thought of any more surgery on this sweet boy is almost to much to bare...

We were a little nervous about getting home due to weather but our amazing Angel Flight Pilot...Pilot Tom...is leaving work early to come get us...TODAY!

We have alot to absorb and some decisions to make...we will keep you all updated. We got some amazing cards, gifts, flowers and love while we were in the hospital. We are so grateful for you all. Thank you. I only have a few pictures to post, Kyle was not feeling well for the last few days but I wanted to show you a picture of a gift from a new friend of ours. Dr. Trent...who we have meet thru my good friend Julie..brought Kyle a new jersey from the hockey team here The Blue Jackets, he's been wearing it ALOT. ;)

XOXO

Kate

thoughts

2010-03-10T20:42:00.003-05:00

I have to start this by saying something I said earlier while Mark and I were not overly surprised by the test results it was still very difficult to process the information and to also accept the information. It is very easy to play mind games with yoursef while you wait for test results...in your mind you play out how certain scenerios are going to go....sadly they never really work out that way. I played that game all night...

My body literally aches for him...everything hurts. He's been in pain most of the day today just from the small amount of food they tried to put thru. When they took him to the OR today we had to leave him at the doors...something we have never done...in probably close to 100 sedations/surgeries I have never ever not held him as he was put under....they wheeled him away from me and he was shaking and calling my name....thank god Mark was there...I could not even move from the spot, it broke me. He came back to us and said...Mommy, I was so sad...when I asked him why he said you left me when I had to take my nap....

The day has been brutal and exhausting...and tomorrow we have more testing in the am, this is a big one and we are hoping for some good news. We need it. We are scheduled to fly home Saturday. As of tomorrow we should have a full game plan on how we are moving forward.

We have no idea where surgery will be or how we continue on this road...my guess is we will be back to Columbus sooner rather than later...I am very impressed with the team here and feel comfortable with them helping us make some very serious choices for our sweet boy.

XO
Kate

Info that we know so far...

2010-03-10T17:32:00.002-05:00

We have met with Kyle's Dr.'s and while the results were not a surprise, we are struggling to understand them.
The motility shows only small amounts of motility in his bowels and colon, while his colon is not as bad as his intestines, it is still troubling.
Chances are he will not regain the motility in his bowels and stomach (we already knew his stomach was not working well)at this point it is their recommendation that we place another separate J tube lower into his intestines to try to push tube feeds through. This with a combination of meds will hopefully help him get off TPN, although there is no guarantee. The fact that his bile output is so bad and with the colon results makes his doctor feel as though in the future he may need an ileostomy procedure...this is not something we want at all so we are hoping and praying we can get food into him. Worst resort is if none of this works, he would need a transplant.
We are still absorbing...he is scheduled for an upper GI tomorrow to check his esophagus and the fistula, there is a concern that he is refluxing past the fistula and the Nissen wrap which will be a very major problem if he is.

Not sure what else to say...except...thank you for sticking with us - we have a long way to go.

xoxo
Kate and Mark

No results

2010-03-09T20:10:00.002-05:00

We have no results yet...testing didn't go so well for Kyle and he needs to head to the OR for another test in the am. After that test the dr will take all the reports and come meet with us...

More waiting....trying to get Kyle settled for the night, he was in a lot of pain for portions of the test and it seemed to take alot out of his lungs and his mental health...

Hoping for a quiet night.

xo
K

He's in

2010-03-09T09:00:00.002-05:00

Kyle's in and sleeping soundly, they are placing the probes. Could be hours before he is out. He was such an amazing trooper this morning and didn't start to struggle until a few minutes before they put him under...at that point he realized what was happening and wanted to go home and play with his kids...

He's been under 100's of times...it's like a kick in the gut every single time. At the last minute he gets petrified and looks at you like what are you doing to me?

After he's out and awake we will be moved to the motility lab where we try to get him to lay still for most of the day. We should have some results as soon as tonight.

Thank you for keeping Kyle in your thoughts, prayers and hearts. He is a very brave little boy.

XO
Kate

all jumbled up

2010-03-08T21:16:00.002-05:00

Kyle's testing tomorrow will basically tell us in a nut shell what parts of his stomach, bowel and colan are working...or not working. We already know that his stomach is not working the way it should what we don't know is if this has progressed into his bowels or not.

We also meet with the surgical team...can I say that I don't like their options, of course their options only work if his motility is still in decent shape...if it's not, we have some very serious and troubling issues on our hands. We have been asked about transplanting Kyle's small bowel...at this point we are not there..tomorrow's testing will tell us alot. Transplanting at this point is not an option for him since we don't know if this is a progressive disease that is affecting his lungs and bowels. At this point we think that's not the case but again tomorrow will tell us more.

It will be a horribly long day for him...for all of us...which is hard since I think we all are already exhausted. Kyle did great most of the day but is clearly stressed tonight...which is painful to watch. He has lots of questions which we can't answer right now. His lungs are stressed and I don't like that at all...he's on high doses of steroids to help with the sedation tomorrow...my guess is that's not helping his overall mental health. He keeps telling everyone that he's in Columbus to fix his belly...he wants to eat he says.

I feel very tired tonight, I am homesick. Sounds strange to say that as an adult. I want to scoop him up and make this all better, put a band aid on, take the PICC line out, remove the feeding tube, heal his lungs and take him home. I wish there was a way to express how amazing this sweet Kyle of ours is...he has so much faith in all of this....I want that, I want to feel what he does...

I am petrified of tomorrow, of what they may tell us...

You all have come through for us so many times...please say Kyle's name out loud tomorrow...even if it's just a whisper. Please.

XO
Kate

Day one

2010-03-08T13:32:00.005-05:00

Here is what happens when you let a 5 year old color after the surgical team comes in....after listening to them for 35 minutes, Kyle wanted to draw a donkey for his friend Carissa...it came complete with sounds... ;) He felt as though his donkey was far better then the surgeons drawing of his stomach.

Rough few hours, they have started the clean out process for his testing tomorrow...sadly this is far easier then what tomorrow will bring.

Tomorrow and Wednesday are full days of testing for him, they came in today and try and prep us for what he will do through tomorrow...at this point I just want it done...we need the results so we can make a plan.

Kate

Very Sleepy Boy

2010-03-07T20:57:00.002-05:00

We all are...anxious and tired but really ready to hit the ground running tomorrow. I have HIGH hopes for this trip. There is at this point no other way to think!

Kyle's sleeping...right next to us...which is a very nice treat. I can hear him breathing, hear his IV pump going, oxygen compressor working....it's calming to me. Makes my mind rest better.

Had to include this picture..Mark was showing the skyline....I just love Big's hand in Marks...

Good night my friend...

Living life for today....with HOPE

Kate

We are here

2010-03-07T15:38:00.004-05:00

I haven't had time to edit our pictures but I have to post a couple...our pilot...who Kyle liked to call Captain Dale was AMAZING...he's was pretty excited when we handed him a bunch of lobsters that my friend Mariah had packed up for us fresh this am to give to him....it was the best way for us to say thank you! (mariah....you guys are amazing)

So we are here and settled into the hotel. We go inpatient tomorrow morning at 9 am...I will update as the week goes on and I have a few really amazing friends who can update for me when I can't. Tomorrow is a get settled day and meet with the team here...all procedures and testing start on Tuesday.

Little tired...I was up with Jack most of the night...poor kid has the stomach flu. I swear I never feel like I'm in the right place...it was horrible leaving him today.

xoxo

Amazing

2010-03-05T16:16:00.002-05:00

We have a flight...a wonderful, perfect flight that will get Kyle comfortably and safely to Columbus...I am in complete panic over getting all the last minute things we need and I don't have time right this minute...but I owe thank yous to so many people. I will post again tonight.

At times it's easy to feel alone, scared and desperate...yesterday was one of those days....within hours of that every emotion I had was in reverse...the love, support and hope we were shown yesterday is something I can't even begin to explain.

Thank you....from a Mom who has HOPE.

xoxo
K

Humbled

2010-03-04T20:33:00.004-05:00

It's hard to put into words what has gone on around our house today...we got (or I should say what we didn't get ) After weeks of asking Kyle's MAINE CARE to make sure his medical flights would be all set we finally had to realize today that they were not going to be of any help. So it started with one sweet amazing friend to post our plea on Facebook....and the next thing I knew it caught off like wildfire. Mark and I both have spent the last 5 hours fielding calls, and emails, and facebook messages from people who are beyond so willing to help. It's humbling and emotional.

You see this is our chance....we dont have more time to waste, Kyle needs this. We need to see this team...we feel as though they are our last chance. Kyle is our world...he's our baby....he's strong, and brave and amazing. I sometimes feel like words can be empty, but please know...we say with love and heart wrenching truth...thank you.

We have 3 strong options right now...three different groups from all over the country trying to help us...I will update as soon as I have more.

Kate

We need help.

2010-03-04T15:45:00.002-05:00

I hate asking for help. We are scheduled to be in Columbus for Kyle on Monday...we need to be there by 9 am....our insurance dropped the ball and did not get the flight we need. Kyle can not fly commercial, he is on TPN 18 hours a day and also on oxygen. We as of now have no way to get to Columbus. We will drive if we need to but we are extremely concerned about Kyle riding in a car away from a hospital for 16-18 hours.

Please. If you know of anyone who can help I would be so incredibly grateful. We have contacted Angel Flights and they were so wonderful but their mid west chapter needs a 5 day notice. We missed that by today.

XO
Kate

I lied....

2010-03-01T20:38:00.004-05:00

Total in your face lie last week. I hit the mall which I rarely do at this point, I've been home alot more with the boys since pulling them from pre-school...trying to keep Kyle as healthy as possible. I realized when I got to the mall how long it has been since I've been there....stores were gone and new ones are coming (yipppe Amy..Sephora!) I ran into a women who had a baby in the NICU at the same time as Kyle....she is so nice and every time I run into her she asks about Kyle...her little boy breezed thru the NICU but still struggles with asthma...(9 months..babies need 9 months!) As soon as I saw her I froze...literally one of those moments where I'm hoping she doesn't notice me...not that I didn't want to see her, I just didn't want her to ask me how things were going. It went something like this...

Me...oh Hi how are you?
Her...we are great...How's Kyle
Me...oh he's great, things are so good...you?
Her...oh the same, asthma issues but overall great!
Me..that's so good...I'm so happy for you!
Her...me to, so happy that Kyle's doing so well, gosh I used to feel so bad for him in the NICU
Me...um yah well...sorry I'm late, really happy for you that things are going so well! Take care...

Total innocent conversation, well meaning...but I walked away feeling like a big ole piece of...well you know. I realize that I shouldn't feel bad, I mean really it's my business if I want to talk about Kyle but it's been bugging me ever since. We aren't good....things are not ok.....We have an entire hospital room in our house, we live on pins and needles and adrenalin....and since that conversation I have felt miserable.

As tough as this is....it's ok. I'm so damn grateful for him..for his strength and courage. I realized that I didn't want her to know how hard it's been because I was taking it in that moment personal....that I have failed him because he's still so sick....but it's not about me. It's about him, and I am so damn proud of him.

xoxo
K

For those of you on Facebook...Kyle has a new fan page... pretty sure he already has more friends than I do! ;)http://www.facebook.com/pages/Team-Kyle/296197553028?ref=mf

One step at a time

2010-03-01T15:28:00.002-05:00

So we had to pull Kyle's g/j tube on Friday and insert a g tube...his pain level was to high and since his pain was so bad we had to stop feeds anyway. The only issue has been getting his meds into him, we have seen a change with his lungs which is not good...my guess is that since we are having to use his stomach it's irritating his lungs. We have seen this before but it's a little more concerning since he will be put under at least 5 times next week and we need him at his best. I hated pulling the j tube...felt like defeat. But we couldn't control the pain and I knew it was the tube. Why he can't hold on to a j tube we don't know. But that's something I hope we can get addressed next week...yah Columbus next week...I'm beyond anxious. I hate what he'll be put through..but we have no other choice. We need the testing, we need to know what we are dealing with. He can't wait to go, sweet boy keeps telling people that he's "going to Columbus to fix his belly" gosh I hope so. The plans are slowly coming together, still waiting for flight confirmations and some last minute details but we should be all set by tomorrow.

XO
Kate

sadness

2010-02-23T22:27:00.002-05:00

I should not be blogging..I should be sleeping, since in less then 2 hours I need to do Kyle's blood draw, but so much is heavy on my mind...on my heart.

Kyle had a terrible incident of pain tonight...sadly it took place while he was playing with Alex and Jack...I could hear him scream from where I was and I went running....he is hunched up in a ball surrounded by his brother and sister, who god love them jack is as close to him as possible covering his ears (screams scare him) and Alex is trying to get me some warm water to flush his tube with....I take over and try after a good 5 minutes to get him settled while Alex and Jack look on...never leaving his side. God, I love those kids. I am trying so hard to be a good Mom to them....I want them to all feel safe and to live and to be happy.

Alex's teacher called tonight...to tell me how worried Alex is for the upcoming trip, but her wonderful teacher wanted me to feel secure and know that she is in good hands and she will be watching out over her.....can't say enough good things about this teacher...as I was putting Alex to bed, I asked her what is upsetting her the most about the trip....and she said she's scared that Kyle won't come home with us. I have no words...none right now.

XO
Kate

The Ups and the downs

2010-02-23T14:59:00.002-05:00

Fridays appointment went great....wonderful in fact....his doctor was thrilled with his progress on eating thru the j tube, she was thrilled with his weight gain and she was thrilled with how much energy he had. She was slightly concerned about how pale he was and that his WBC was elevated but with no fever she sent us on our way...telling Kyle that he had made her whole weekend. Then Saturday came...and we started to have some belly pain....and then Sunday came and the belly pain increased...and then Sunday night I was up with him for a while and Monday was a disaster. After talking to Kyle's dr was backed off a little on the feeds and hoped that it would help....this am was rough but today has been good for the most part. We hit the dr's for a weight check and Kyle had lost weight....major let down. I can't understand it...he's on nutrition 24 hours a day, how could we have lost weight (like how I say we....kills me when he loses...like I somehow could have helped prevent this more)

I hate going from high to low....I know I should be used to it...really it should not hit me so hard but it does..I'm craving normal, and quiet(or loud) I'm craving boring and no TPN.....food...real food for him.....I want to get babysitters and not a nurse when I need a break. (love our nurses....) I want to not have him hooked to a pump 24 hours a day....I want him to not cry when he sees me coming with his TPN...I want him to not have to beg me to be "FREE"

Tomorrow is another day....one that I will be happy to face....but for the next 10 minutes I'm going to allow myself to just feel bad.

XO
K

Dr's appt and BIG things

2010-02-19T08:03:00.003-05:00

We see our lead team specialist today, I really don't know why I get nervous about these appointments...I talk to her at least twice a week and we email back and forth even more. I guess we should be getting more details about Columbus and that may be the reason for the nerves. I'll update after the appointment...

BIG NEWS....

Yesterday I was able to feed Kyle COMFORTABLY for 6 hours straight at 45 mls an hour...that is the most we have been able to do in MONTHS. He had ZERO pain until of course we stopped the feeds to start TPN. Then we went down hill. But that's ok..that's movement in the right direction...small steps....amazing how good that can feel!

XOXOX

This is what happens when your sister ROCKS

2010-02-17T16:42:00.007-05:00

She loads you up, pushes you off and is more excited then you when you laugh hysterically all the way down.

xoxo

Where we stand

2010-02-16T20:56:00.002-05:00

I hate when I have days where my thoughts are so jumbled that I can't seem to form words. I looked around the house today and was dismayed to realize I had gotten nothing done except take Kyle for a weight check, start his j tube feeds, check his sugars 3 times and start his TPN, which at that point him and I really are pretty much attached at the hip since now he has three things hanging off of him and can't move without help. Maybe it's the lack of sleep...Kyle's sugars are to high now and since last Wednesday I have been having to test them every 2 hours while on TPN...not only does it makes for a long sleepless night. Err I mean nights...bare with me...but that sweet boy is literally a pin cushion...makes me ill when he cringes every single time I do it...(of course he never complains..)the 18 hour TPN is not fun and it's trying for both him and I....we are increasing feeds which is great! But (of course you knew there would be a but) with the increase comes more output and more pain....and of course more leakage around the tube. But at the same time, as hard as it is on him...gosh he smiles, and he loves and he is so smart....and when he laughs....you laugh, because it's addicting when he laughs.

I had so much more to say....I've had one of those days....but it will have to wait...time to check his sugars again. ;)

xoxo
K

quiet day

2010-02-13T13:53:00.001-05:00

overdue update

2010-02-12T10:53:00.004-05:00

I think sometimes after bad appointments or bad days it's hard to put the feelings down in writing, like maybe somehow that's to much of a reality check...like what, writing it makes it real?! It has not been a good week, we are continuing to trend in the wrong direction...blood labs are moving in the wrong direction and his TPN (IV) infusion is now at 18 hours a day. For a 5 year old that is pretty upsetting...to the point of tears now. Basically after he's hooked up he can't play, he can't run, he can't move without us helping him. It is miserable...but it's where we have to be to keep him safe and at home. His body is craving nutrition and we can't seem to make that happen...cold hands, less peeing, pale, and all I can do is sit back and do what the dr's tell me...it's the absolute worst feeling in the world.
We leave for Columbus in 3 weeks...it can't come soon enough. I am usually pretty good at absorbing information and moving forward from it....we saw neurology on Wednesday..Kyle's tremors and tics are not getting better and actually are worse at times. The good news...it's not seizures...the bad news is that it's stress induced. That sweet child's body is so stressed that this is one way for his brain to deal with it...can I say it made me want to vomit. There are things that trigger it that make it worse..changing the dressing around his line is a very big stress for him and scares him...so by trying to keep him safe and infection free we send him into a full blown tremor that can last for hours.
We are slowly making progress with his food infusion into his j tube. It's not going that great, he's miserable. But we have to keep going forward...we have to keep trying.

xoxo
K

Alex

2010-02-10T16:35:00.004-05:00

I have a Kyle update coming tonight..it hasn't been the best few days. But for now I have pictures of Alex and Mark from the Father and Daughter dance...ahhh I just want to squeeze her!

Home

2010-02-06T09:50:00.002-05:00

We are home, we left yesterday with a pretty solid plan on where we need to be. So far the j feeds are not going well...lots of bile, lots of leakage and he's complaining alot. I am at this point really torn we need to push forward and give this more time..but its extremly hard to watch him have to suffer for us to once again probably prove a point. On the flip side of that I keep hoping that we can get over this hump and see some positive results. We have to get him off the TPN, his liver enzymes are still climbing and we can't afford that.

I am feeling a little defeated today...I hate this for him...on top of that Jack has strep and an ear infection...thank god for Mimi and Papa...who took him to the dr for me and kept him last night...we can't afford for Kyle to be around that. With his high doses of steroids that's a major problem we can't afford right now...Jack is alot better today and is pretty happy to be spending one on one time with his grandparents...yet once again I feel like I can't be there for all of them..it's been a rough week. Alex is struggling and now with Jack sick I wonder sometimes how we will manage all this.

Xo
Kate

Perfect

2010-02-04T13:02:00.002-05:00

Everything went perfect this morning. No issues at all. What a relief. Now we wait and see what the plan is. I know we will start feeds really slow thur thr J and hope for the best!

xoxo
K

here and settled

2010-02-04T07:32:00.003-05:00

We arrived inpatient yesterday morning and Kyle as usual quickly settled into our hospital routine. This am we will go down for his new g/j tube and a new PICC line. I will update when we get back up...I'm so hoping for no bumps and a smooth sedation. I have to say as much as I hate being here, and I mean really hate being here, esp when both kids at home are struggling so badly....the way the nurse and dr's treat Kyle is a huge comfort. So very grateful for that.

xoxo
Kate

Things are not going so well

2010-02-01T20:10:00.002-05:00

We are schduled to be admitted to the hospital on Wednesday morning. Unless his labs from today come back and he urgently needs to be admitted we'll continue to plan for Wednesday. Mark and I are very concerned with Kyle, his twitching and shaking are getting worse, any stress at all....like yesterday I had to change the dressing around his PICC line, clean it and then reapply the dressing, it's painful for him, he has small cuts in the skin where the bandages have casused break down which sting and bleed during every change. This process scares him to no end. After the change the twitching and trembling increased to almost non stop. Mark and I couldn't sleep last night, petrified of what is going on with our sweet boy. After talking to the dr on the phone they really believe the stress of everything is catching up to him. He's 5 now, he gets some things and sadly doesn't get others so it's so confusing and scary to him. I have been heartbroken the last two days....spent most of last night in and out of his room...scared. I just love and adore him so much it makes my body ache. I'm petrified of what happens when we hit the hospital on Wednesday what that will do to him.

We will be meeting with the GI, wellness, and Neuro team on Wednesday so we can try to help our beautiful boy.

xoxo
K

Me and the Big guy

2010-01-31T09:11:00.003-05:00

I'll start this by saying, I don't expect anyone to agree with me on this blog, I fully intend to get the comments saying so...but oh well...here goes anyway.

I have struggled with God for a LONG time...I've said before I'm jealous of those who can put all their faith, their life, their world into God's hands and feel good about it.

When I was 10 my Mom died...from breast cancer. She believed in GOD, she read the bible, she took us to Church, she taught us about God and she had us baptized when we were ready. She never forced God down our throats but instead wanted us to find where we were comfortable and then she encouraged our faith. When she died I felt betrayed by our God...I felt so alone. How could God do that to us...it was the only experience I had with death, with bad things...it was a huge shock. I can say I never forgave God for that...never...

Until I got pregnant with Alex, and the ultrasound tech said it was girl...and a little bit of my heart healed. I needed her...I wanted a little piece of my Mom back, and I felt like this was God's way of bringing me a little peace, a little comfort.

Fast forward to Kyle...Kyle's birth...Kyle's 9 months in the NICU at MMC....the 5 years we have spent literally fighting for his life. The constant pain and the testing and the heartache...

And me and God...are no longer speaking. I say this light heartedly to my family, to my husband. But I'm serious...I don't ask him or should I say "pray" to him anymore. It doesn't mean I don't believe in a higher being...I at this point have NO idea what I believe in anymore. I want to believe, I want to put all my faith in him...but to watch my little boy suffer they way that he has for 5 years...well to say my "faith" has been tested is an understatement. I have friends that have lost children, good people, the kind of people that should be raising children....how can any of that make sense?

I don't think God's role is to make life easy for people, I don't expect him to ease all pain and suffering...but I do expect more. Maybe it's me...the way I think...maybe I hope for to much.

I think and believe that if say Kyle's name, if you talk about him to people, if his strength helps you in some way...that's just as powerful as saying a prayer for him. Oh and don't get me wrong, when people say they are praying for him..that's great. We'll take that, because that means you believe and well, I'm a little jealous of that. If I am feeling low...I will reach to my Mom...and to Mark's Mom...but me and God...still not speaking.

xoxo
Kate

Head games

2010-01-28T15:05:00.005-05:00

I play head games with myself, I'm sure it's unhealthy in some ways and healthy in others. I work out worse cases scenarios in my brain and then when things don't go that bad I somehow feel a little better about life. It's been one of those days, where I find I'm talking to myself all day in my brain...trying to make sense of things that make no sense to me. We are still at home and will be as long as Kyle stays stable until next week...his team is still trying to figure some things out and while I know they are trying I feel frustrated. Kyle's off a bit and has been the last few days, those subtle changes that we notice that may not be alarming in some kids...but with Kyle it makes us anxious. Makes his dr anxious...big sigh. We are going to start replacing his fluids thru his IV tomorrow...this will keep us home more but increases us messing with our life line the PICC. We got word that Columbus can't take him until March...I'm still trying to process that. I am still living life for today. Enjoying today's small moments...like when Kyle saw Alex get off the bus, he turned and looked at me and said.."there's my girl" So excited to see his sister...makes me melt..just a little.

xoxo

My girlfriend http://www.miraclemonsterdesigns.blogspot.com/ did this blog and this picture of the boys..she's pretty amazing...and very talented! :)

Not a good day

2010-01-26T16:20:00.002-05:00

I knew last night that today's appointments wouldn't be good, Kyle liver enzymes are way elevated again and he lost weight for the 4th week in a row...we have no other choice at this point then to admit him to the hospital and start the Omegaven for his liver. His dr also let us know that it looks like Columbus is still 3 weeks out which scares all of us, we are literally working on borrowed time with the PICC line and they aren't comfortable putting in another central line here. They want Columbus to do it. During this stay we will also place a g / j tube again and hope that we can maybe get some feeds thru the j...hoping...praying....we know what normally happens when we try this but we have to keep trying. He will hopefully be admitted tomorrow but it could be Thursday, it all depends on the schedule down in IR..we are requesting a specific team so it may take an extra day. None of this makes sense to him, he's confused tonight. He's struggling with some anxiety issues....

I am so angry, I can barely stand it. I hate this...he's so tiny right now...I am petrified of another infection...his body is already so compromised.