sadness

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

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

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

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

xoxo

K

Where we stand

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

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