quiet day

overdue update

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

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

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

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

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

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