Wednesday, September 14, 2011

Still here. I hope you are also.

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 lives XOXO K

11 comments:

RMmom said...

glad to see you back :)

Mark said...

I love you.

Pilot Tom said...

So sorry Kate- Here anytime you want to take him anywhere
Pilot Tom

Tommie said...

Thank you for updating us. There ae so many of us who haven't even met Kyle but who love him and his amazing, beautiful family so, so much. I think of you all often and wish for better things to come your way.

708b0152-db5c-11e0-b9d3-000bcdcb8a73 said...

God Bless You and your family!

Patsy said...

You, Kyle and your beloved family are always in my prayers.

Sharlene said...

Glad to see you again on here, I've been checking back reguarly! I adore you & your family Kate and Taylor & I pray for Kyle everyday!! Hugs to keep you warm, love to keep you strong, and healing for sweet Kyle! XOXO

MJ said...

I am so sorry that the pacer was so bad for Kyle. The news about transplant is a terrible blow.

I think that you are such an amazing person! The way that you love and empower Kyle truly inspires me.

I will keep you all in my prayers.

Shari said...

Glad to see you back! :) Of course I have not forgotten you. Pray for your guy each day and your family, too. You are an amazing Mom who has taught me many life lessons.

girlyhurley said...

We are all still here for you. Many prayers to you and your family!

PS- my school recognized Mitochondrial Disease Awareness this week. They are wearing green. I also encouraged my students to wear orange for Kyle!

Hugs!

Anonymous said...

Have you looked into the Transplant Program in Omaha NE at Nebraska Medical Center, they often accept kids who are denied by Pittsburgh.