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