liver enzymes

Kyle's dr here called and after chatting with her for a few minutes and talking about his tube and belly pain I heard her clear sigh a little and I nervously laughed and said...Oh your not calling for a check in are you? No....his liver enzymes are WAY up....up to high for him. She made an immediate change to his TPN and said we need to address this in Boston tomorrow. It's so clear that Kyle's body hates the TPN...we all hate it. But he needs it now..we can't even begin to put anything into his poor belly...the kid has been miserable for 2 days...so Boston is now even more important. I know we are in safe hands...but I hate this. I hate all of it...I want someone to magically fix this...not exactly the most mature approach...but for this minute I don't want to be.

I will update when we get all settled in tomorrow...

Thank you...for support, love and most of all understanding.
K

I hate being right.

Seriously, I do. Ok, maybe the only time I hate being right is when it involves Kyle. That poor sweet boy had a horrible day yesterday, spent most of the day laying on couch watching the kids decorate the tree...he tried to put a few things up but was more content to lay with me on the couch. He was having horrible stomach pain and it doesn't seem to be much better today. I have emailed the GI dr here but I know they will want us to push thru until tomorrow. So today will be spent trying to keep him as comfortable as we can. He was warm this morning but no fever.

Yesterday he was on my laptop playing and I was watching some TV, there was a man in a hospital bed laying there quiet. Kyle looks at me and says..Momma I not go to the hospital anymore, right? I didn't even know what to say....he knows we are going to Boston but we call it Boston, not the hospital...I'm not looking forward to the conversation tomorrow morning. Poor kid. This is probably the 4th time he's asked us that question since coming home from the last stay....I wish I could say NO Kyle...NO more hospital.

xox
K

Something is off

I can tell I'm holding my breath, always waiting for the other shoe to drop, checking Kyle's temp over and over everyday. Each morning that I go into his room to unattach him from all the vital tubes he needs at night and I hold my breath, scared that he'll have a fever, another infection and we will have to immediately head to the hospital. I need him to get to Tuesday. This morning no fever, but an increase in work of breathing and his color is off....fills me with dread. His bile output has been up all week. No major increase last night, so while he's still way above normal it's now staying about the same.

We are decorating for Christmas today...we usually make a huge deal about it the day after Thanksgiving but since we won't be here I want it done before we go. I want Kyle to see it all and for him to feel good about it. I want Jack and Alex to decorate with their brother...I want to feel my families happiness before we separate again.

xoxo

K

Busy

I have tried to blog for 3 days now and it seems like every time I sit down someone needs something. ;) Kyle's been struggling with the antibiotics he was on for his central line infection they did some pretty bad things to his bum area and we are still trying to get him past that. I have never seen anything like it. His bile output has increased alot and his g tube site area is inflamed, I worry that this is usually a sign days before that a fever is coming but I'm praying we can just get to Tuesday and not get stuck in the hospital up here. I think I'm avoiding thinking to much about next week. I keep telling myself that missing my birthday and Thanksgiving with the other two kids is no big deal, that we need to focus on getting Kyle better, but there is a piece of me that is so sad that the kids won't be with us on that day. We've missed so much as a family....
Alex got her report card yesterday and it was amazing.....that kid is truly a wonderful kid...started a new school, our Make a Wish trip got cancelled one day before we were supposed to leave, her brother being in the hospital for most of her first semester of third grade and that child pulls off an amazing report card...she continues to amaze me.
Jack is Jack....what a blessing he is. He's been doing a great job at distracting his brother and keeping him smiling.

My new blog is coming soon....one of my bf is creating it..she's been working so hard on it. I can't wait to show it off! :)

xoxo
K

Boston

So we heard from the surgical team at Childrens....looks like we will be spending Thanksgiving in Boston. We will be heading down early next week and have a day of inpatient testing. The next day the team will perform a gastroscopy and get a real good look at his esophagus and stomach. This help them figure out esophagus issue. They will then try to dilate his esophagus a little bit and bring him back out. Because things are so messed up in there he will have to be admitted to ICU for monitoring. Hopefully the next day (depending on what they find) they will perform the hernia repair in his bowel. They are still somewhat unsure of how to fix it this time, the location of the hernia is in a horrible place and located very close to his aorta. Of course right...

So sadly Kyle will have to be opened up twice, from his belly up to his throat. It's going to be a difficult few months. The plan is to let his body rest from the abdominal surgery and then try to fix the esophagus.

That's all for tonight, I feel very lost tonight. Heavy heart....I'm so tired of this for him. We've seen the bowel surgery before....4 times before. So we know what we are in store for. I'll keep you all posted as we get more details.

K

So we begin again.

You know every time Kyle overcomes another hurdle I feel myself slowly let out a breath. It's been so long since I updated I should give you an overview, although like I said before..if your still reading this blog boy are you loyal. ;)

Kyle was born on October 27, 2004....my sweet little second child who came into this world to early and very weak. Kyle spent the first nine months of his life in the NICU literally fighting to breath. No one at that time could figure out why our little 33 weeker was so terribly sick. Kyle has never eaten by mouth and was entirely g/j tube feed. His lungs during the NICU were so bad it was at that time to dangerous to feed him by mouth for fear of further damaging his lungs. He was tested for all sorts of different genetic issues and passed them all. We finally were released to go home and we left the NICU with 2 Nissen surgeries, a g tube, oxygen, daily nebulizer treatments, loads of medication and really no answers. Kyle up to this point has had a very rough few years. He continues to be unable to tolerate feedings thru his stomach and after lots of testing we have discovered that his stomach does not work. He also has for the second time in his life a very aggressive hernia in his bowels that we hope is the cause behind his increasing feeding intolerance. At this times Kyle is completely TPN dependant and relies on a central line to keep him nourished. During our last hospital stay it was also discovered that Kyle has surgical material in his esophagus that somehow has made it's way from the outside of his esophagus to the inside. It has been there so long that it has created a false track inside and needs to be repaired. Both of these surgeries are major surgeries and will require both of Kyle's abdomen and his chest to be fully opened. The hard part is that his abdomen has already been opened 4 times...complicates things even more for him.

Thru it all....our sweet little middle guy is the smartest, kindest, most wonderful boy you could ask for.

We are at this point waiting for the final proposal from Childrens in Boston. We have submitted a muscle biopsy and are awaiting those results. It is believed that Kyle may have mitochondrial disease of the GI system.

I have clearly glossed over so much of the last 5 years, but I truly try to not look back...only forward. Kyle has fought for his life so many times that I know he'll fight this next battle just as strongly.

Fingers crossed we should have the final game plan tomorrow.

Kate

I'm coming back

Ha....ok If your actually seeing this...boy are you loyal! I'll be back soon! I am having my blog re done and I'll be back to blogging! :) So stay tuned!