Hope in 2010

The last day has been a tough one for Kyle....after his transfusion last night his blood pressure and heart dropped way to low...it was a very long night of trying to battle the his pressures yet not fluid overload his lungs..add pain on top of that and it was a heartbreaking night. Around 1100 last night in the middle of a horrible pain episode he asked if I would take him home to his family...he said...please Momma...I miss my dad, my brother and my sister Alex...then he started to cry...gosh I am so tired of this. After the rough night they discovered a murmur which he's never had so he had an echo and everything looked fine. They think it was all the fluid but will continue to watch his heart closely.
I so feel positive that he was better this evening and his pressures are now normal. Which is great news! His pain and output from his tube is worse which is concerning and his belly is still distended.....we don't have any cultures back from his picc line..praying that the infection is clearing and not moving toward his picc line.

I am trying..really truly trying to stay positive and have hope. But watching him scream in pain every day is really taking a toll on all of us....the kids at home miss him so much. I feel at a loss when they ask when he's coming home.

Alex is petrified that someday he won't come home...My god, how do you answer that question...we can't promise her something we can't guarantee...yet we need to reassure her and keep her feeling safe. Kyle is so fragile...each one of these infections take more and more out of him..I just don't know anymore.

We are down..but I seriously still cling to hope..hope that 2010 will be our year...Kyle's year...

Happy New Year....
XO
K

Quick update

Kyle did amazing and was pretty excited when he woke up that Mimi and Papa were here for a visit. The picc line is in and they just started his transfusion....really holding out hope that this goes well and he has no reaction to it...Kyle is known for reacting to everything so we are holding our breathe that everything goes ok!

They can't run the morphine while he is getting the blood transfusion so it's going to be a long two hours...hoping we can keep him quiet and calm so that we can keep his pain issues to a minimum.

They won't even discuss a possible time to go home...seems like we have some big goals to hit before we can leave...looks like we'll be watching the snow this weekend from our big picture window at MMC... ;)

XO
K

Blood Transfusion and central line out..

Kyle is scheduled to hit the OR around noon. He also needs a blood transfusion, his hemoglobin is really low....the dr's are not sure why his levels are dropping and they are running more tests now...I can honestly say I'm not very happy about this, I have a pit in my stomach....

I need to have confidence in the team here to be making the right calls for him but I feel nervous and anxious right now.

Will update when he's out of surgery.

XO
K

Our sweet boy

So here is the latest....

We are losing the line, I'm still trying to wrap my head around this...the dr's feel it's for the best to get this line out...they will take him into surgery tomorrow to remove the line and then they will place a PICC line in his arm until we are sure the infection is gone...at that point they will try to place another central line...as I mentioned yesterday none of those things will be easy...we are running out of spots to put these lines.

Alex, Jack and I are sick...we've all been in bed since last night..which means I can't go near Kyle which is killing me. Mark has been at the hospital with him, and while I know he's in the best hands...I've never not been there with him for this long.

The dr's keep bringing up the mass in his esophagus, some feel like it needs to come out and others feel like it's to dangerous to remove....we are at a loss right now, I'm so worried about him. He's miserable and asking to come home. He's back on the morphine pump....he's complaining about pain alot.

I hate this feeling...

xo
K

Positive line infection

The one thing we didn't want...a line infection, worse it's one that can be hard to get rid of. Kyle's line has yeast growing from it...the hard thing is it can a stubborn one to get rid of and we may lose this line. That is very bad news, we don't have many spots left for central lines...I'm not even sure if we have any...let alone one more.
The poor kid is miserable, high temp, retching and gagging and stomach pain. His heart rate has been to high for the last 24 hours, we are trying bolus bags of IV fluid and praying this helps the heart rate...if it doesn't and if the fever stays up we won't have any choice but to pull the line before he gets very septic.

I will update later...
As always...thank you for continuing to support us...
Love
K

and back we go

Back to the hospital that is....I can't even get into the details at this point because it's giving me a stomach ache. Kyle has a fever and tummy pain again. We have started morphine again and are hoping and praying this is not a line infection.

I will update later when we have news.....

In other news...We had an AMAZING Christmas..... :)

xoxo
K

Where to start

I don't even know where to start, it seems strange to feel so happy to be home yet feel so sad inside over where we are in this struggle with Kyle's health. I am trying to keep clinging to the fact that we are home, and yet knowing we'll have to go back sometime soon. Here is the latest...

We no longer have any use of Kyle's belly, his motility has as far as we can tell totally shut down, all his meds have to go thru IV...they have had to increase his TPN to 14 hours a day, along with the IV antibiotics his now hooked up a total of 16 hours a day..not an easy thing to explain to a 5 year old. Even with these changes his retching and gagging has drastically increased this week..it is at times painful to watch. His lungs are not liking the gagging and we have had to increase oxygen and treatments. His pain comes and goes, it is far better than it was over the weekend but its a constant worry for us.

The plan right now is to try to get thru Christmas and get him into Tufts in Boston. He will need further testing to try to figure this all out. At this point we are willing to go wherever we need to go to find some relief for him. It was a hard weekend...even harder than after surgery.

I just don't understand...
xoxo
K

HOME

I only have a minute, but we are HOME...yup HOME....HOME....I will update tonight from HOME after I get the kids to bed....it's not the easiest set up, and Mark and I are feeling a little nervous, but we are HOME...

:) xoxo
K

Update

Kyle is still inpatient and still on the morphine. His g tube site is still inflamed but is better than it was when we got here on Friday. We are waiting to see the GI specialist this am, I refuse to have him in here over Christmas...I just can't do that to him. He had a good day yesterday afternoon and we thought for sure we were in the clear but overnight last night things got worse again. Poor kid was miserable. We did get the all clear on his blood cultures, which we pretty much knew on Friday that we were not dealing with a line infection.
We had so hoped to go home today...there is so much we can do at home but fighting this pain might not be one of those things.

xo
K

Hospital

Yesterday Kyle was admitted back to the hospital with a fever and severe g tube/abdominal pain. His g/j tube has been removed and he's been bleeding quite a bit from the site. He's on a continuous morphine drip to try and control his pain. At this point we are awaiting blood cultures and labs. I will try to update later tonight.

xo
K

Horrible day

Kyle's had one of the worst days since his surgery a little over two weeks ago. Two nights ago we started a very slow infusion of pedialyte. Yesterday we had small amount of leakage around his g tube site, because it was only a little I continued with the pedialyte last night, even though we had an increase in bile we kept going. Today has been a complete nightmare, Kyle's had major leakage around his g tube, mostly bile which is now burning his skin...I've been changing his g tube dressing hourly but it's not helping...the poor kid has been screaming in pain all day.
Clearly we will not continue with the pedialyte night....this is a major setback...again. Watching him scream all day has been beyond painful and exhausting.

It's time for this sweet kid to catch a break.
K

Where we fit in.

There are times where the reality of our life smacks us in the face...it's not so much the day to day living, that is something we are and have been working hard at getting used to. After every medical crisis we slowly adjust to our new normal and we move forward. That is our job..what Kyle deserves. The hardest part of living with a child who has a chronic condition is trying to fit in, to somehow not completly lose ourselves in the process of making life as safe and comfortable as possible for our son.

That is something I have struggled with for a very long time. The disconnect that comes with the ache of watching Kyle fight for years. I look at that picture that's over there and I sometimes yern for that girl....oh I was truely that annoying girl. Happy....oh, so happy. I had everything I had ever wanted. I had a great job, a husband who would do anything for me, wonderful friends, a great family...ohhh my life was so good.

There are days where I don't know where I fit in...Kyle doesn't have a defined disease, there are not alot of people out there who have lived in extreme fear for 5 years. Some days I feel like we are no further along in this process than we were 5 years ago when we watched him fight for his life in the NICU. I cant' wrap my brain around any of this....I know I need to stop trying to understand this and just live in this moment, why that seems so hard right now I'm not sure.

We are scheduled to get a new game plan tomorrow for Kyle...we seem to be no closer to getting off the TPN, it's now time to accept that and figure out a new plan for him.

xox

K

Trying to take it one day at a time

We still are not seeing the improvement we need to see. After emailing back and forth late into the day yesterday with Kyle's surgeon we are now slowing realizing that we are still in the same position we were before surgery. Kyle's bile output overnight is still to high, his bile (at least some of it) is still going in the wrong direction and the output is to much. The hardest part of this is that we haven't even attempted feeds yet and we all know that if we do the bile will just keep increasing. That magically fix we had desperately hoped for is still not there....it was a difficult night.

But today is a new day...we continue hoping that we will see something...something positive from all of this. Our little boy went through alot last week...I still refuse to believe that was all for nothing.

xoxo

K

I want to just squeeze them....

Just a few pictures from Kyle coming home....

They are not the best quality, I didn't have alot of editing time...but I wanted to share them...

We are still in a holding pattern, waiting for the swelling in Kyle's belly to go down more, keeping positive thoughts...and getting excited to spend Christmas together as a family.

xoxo

K

HOPE

We are all adjusting to being home, I think I forget every time we do this that it's not just Kyle that needs to re adjust, that we all have to....and I find myself always out of sorts. Grateful to be home but searching for that routine that I crave when we don't have it.

I have been in daily communication with Kyle's surgeon, I can feel his frustration mounting. We have seen no improvement since surgery. When I asked him today if I should be losing hope, he said not yet...that his bowel was kinked for a long time....it may just need more rest, more time. Although he said he had hoped we would be further along by now. I told him I still have HOPE. I refuse to believe that we are going to be TPN dependant....that his bowels have stopped working....I know we are going to move forward...but like everything Kyle has done since birth he will do this in his own time. For now we wait...and we hope that he can stay infection free thru the holidays....

xoxo
K

Home...

Ahhhh...we are home. We got home late yesterday and it was the best feeling ever....until the delivery guy showed up with this weeks TPN order, along with it came the needles, the tubing, the tape, the central line dressing changes.... I have to admit, it made me incredibly sad...as crazy as it was I had so much hope last week, knowing that by now we wouldn't be off TPN all together but maybe we would be on some tube feeds and we would be cutting out that nasty (but life saving) TPN. It took a good 20 minutes before I kicked myself and started to realize that this is how it is, I can't change it....being negative and sad is not going to help Kyle. He needs us to keep going and to stay positive. We need to help his body heal and we need to keep moving forward (even when it feels like we aren't moving anywhere). His liver enzymes before leaving the hospital were WAY to high, we are hoping that this is just his body reacting to the surgery and the biopsy. We are lucky in the fact that Kyle's surgeon is the man with the medicine to help his liver if we keep trending in the wrong direction. We are still waiting for the liver biopsy results so that will help when we get those. We will get more labs tomorrow and hope and pray that his enzyme levels are coming down.

We would not have made it thru the last week without our family, friends and neighbors, can you imagine they still are helping after 5 long years and they continue to amaze me...being able to have Mark and I both at the hospital with Kyle all week was a pretty wonderful thing. He really needed both of us...and we really needed each other. The support everyone continues to give us blows my mind sometimes, from far and near you all keep us going....thank you for loving us....

XO
Kate

I have lots of pictures to upload from the kids being together last night, it's amazing how much they love each other...I think sometimes we under estimate the bond between all of our kids.

The latest

I have a whole blog floating around in my head, but I can't seem to put it all together...my brain is starting to feel like mush and it's a blog that I don't just want to slap up. So instead I'll give you the latest.

All attempts to slowly start fluids into Kyle have stopped and we are not sure when they will try again. While I know I shouldn't let this discourage me, it is. He had some issues with pain today and it made it tough on all of us. I couldn't stop myself from thinking...what are we doing?????? He needs more time, this will all play out on his schedule, so for now we wait and let his body heal. We are still hoping to go home tomorrow, his surgeon is leaving for a conference and is willing to talk us thru any issues this week....there is basically nothing they are doing here that we can't do at home. Luckily Kyle's surgeon is a brilliant control freak ( I say this with love) and he doesn't want anyone else here making changes without his consent. So that's partly fueling out discharge tomorrow....Kyle still has a long recovery and of course full TPN feeds thru his central line to deal with....but we have been here before so I know we can handle it....and clearly if anything goes wrong off to the hospital we go.

I can't shake the heavy feeling..I want so much more for him...

Kate

I have been missing the kids so much this week that I went thru a ton of old pictures....I'm attaching a few.... :)

*update from the am*

We have already stopped the slow drip of pedialyte, again Kyle's body showed us he wasn't ready. His surgeon was in this am and said to stop it immediately. Discouraged and worried...clearly his body needs more time, we were just so hopeful that we would be moving forward by now. So much hangs on this surgery...it has to be working.

"that baby is driving me nuts"

Oh yah....poor Kyle, clearly everything is taking a toll on him including our sweet preemie roommate....as most of you know my heart melts over any preemie...there is and always will be a special place inside me set aside for doing anything I can to help a fellow preemie parent or child. That being said....deep breathe.....wow....this sweet little girl (with the parents who are never here) is in need of some attention. The nurses (god bless them) try....but they aren't parents...parents who SHOULD BE HERE. Ok...sorry. I will step off the soap box for now but trust me when I can once again thing clearly I have alot to say about this subject.

We changed the plan yesterday and started pedialyte at 5 mls an hour thru the j tube because Kyle's belly was still slightly distended. That didn't last long, his belly ballooned up and the surgeon said to stop. His lungs also started to go downhill a little and it was Kyle's way of telling us he wasn't ready. Last night was a rough one for him, major pain episode that we still have not figured out yet.

We are going to try pedialyte again nice and slow and hope that we can get that into him without any problems. Fingers crossed.

xoxo
K

Going a little postal....

Yah, that was me this morning when the CNA came in at 6 am to take Kyle's vital signs. I would like to state for the record a few things before you judge me...

1. Kyle is hooked up to a cardiac and oxygen saturation monitor 24 hours a day
2. I had just gotten him back to sleep after he was stuck for a sugar check
3. He was woken up 5 times in the middle of the night for numerous reason, including our infant roommate crying on and off all night. His IV ringing off 4 or 5 times (I lost count) and the surgical team coming in at 5 am to check his incision site.
4. She came in flipped on a light and just assumed waking him up was a good idea
5. All to get a temperature check (I am at this point laying in bed with him because he flipped out the last time they woke him up because he was exhausted!) So I would know if his temp was high.

I will say it was not one of my brighter moments....but at his point I'm tired, he's tired, we are sad, miss our kids, miss our home...jeez I think we even miss the dog! ;)

Looks like we will start feeds today into his belly....makes me nervous and a little sick to my stomach! I'll update later...in the meantime I swear to behave myself today!

wake up, wake up

It's been another long day, this morning Kyle's epidural got pulled out by accident...no one is really sure how but when you have over 15 tubes, wires and IV's hanging off of you it starts to get hard to keep track of everything. This left us chasing pain all afternoon but it seems that as of tonight we have a good hold of it.

We need Kyle's bowels to wake up, as of right now we still have no real bowel sounds and we need them to start making some noise down there. We won't know if the surgery was "successful" until after we try to start feeding him thru the tube in his belly.

His spirits have picked up today which is wonderful to see, he actually leaned over today and told me I was the best Mommy ever....which made me giggle, I haven't heard that in a few days. I'm thinking he's not as mad at me anymore...

xoxo
K

I'm trying

I'm trying to understand all this, on a daily basis I try to wrap my head around the last 5 years and so many parts of it make no sense. I have never hidden the fact that we had to have help in getting pregnant with Kyle, while Alex's pregnancy came surprisingly fast...we actually had to work hard to get pregnant with Kyle and also to stay pregnant with Kyle. His entire pregnancy was a struggle filled with worry and anxiety. I can say I loved Kyle as soon as I knew he was there, probably loved him or the imagine of him long before that. As each week in my pregnancy went by I became more and more attached to him. When he came early, I can honestly say never once...not one time in the whole labor process was I ever worried about losing him. It really wasn't until 12 hours after his birth when the NICU dr came to my room to tell me Kyle was critical that the thoughts of losing him started to creep into the back of my brain. There are times when things are bad that I throw out all sorts of stuff at Mark...I wanted him to badly, I pushed fate...I was selfish and he and I are being punished. I try so hard at times to figure out why, after 5 years I still have to watch my child wither in pain, to listen to him scream, and to watch him plead with us to make it stop.
I will not at this point get into my feelings on the issue of God...I realize that's a loaded post...that will come soon I can promise you. I think at times I'm incredibly jealous of the relationship and feelings that so many seem to find for God. I at this point feel bitter and angry. Not for us, but for Kyle. How some can find so much peace with God, does amaze me...

I know.....I'm all over the place...I'm tired. I'm hurting for Kyle. I miss the other two kids, our home, our bed, and I still find myself in this place of trying to wrap my head around all of this....trying to stay positive, knowing we have a long road ahead of us still but knowing that it's going to be ok. There is no other option.

xo
K

Day 3

Day 3 is starting out much harder than the last few days, Kyle's pain is starting to break through. In changing his epidural order last night we knew there was a risk that his pain would not be controlled by the epidural anymore. Seems we've hit that...poor kid is miserable. His surgeon is concerned that the pain will stop him for breathing so we are watching that very closely. Giving his neb treatments before he asks for them since any amount of coughing is putting his pain into a whole new level. He's still incredibly pale and they continue to watch his labs closely.
That's all for now...


xo
K

Very long night/day

Kyle is holding strong. We have had a rough day but that is not unexpected the day after a major abdominal surgery. While the epidural has been providing him with great pain control it's producing a very nasty itching side effect. Even after trying numerous medications to try to stop the itching it's only increased. It's very hard to watch and we've already seen him itch one IV out. Kyle is extremely pale and quiet but again, he had major surgery yesterday so we were prepared for this. He continues to amaze us and show us how strong he really is. I can't count how many times I have thought, wow I couldn't be more proud of him....yet everyday I feel more and more proud. His strength is inspiring.

I will update later tonight.

K