Tuesday, January 26, 2010

Not a good day

I knew last night that today's appointments wouldn't be good, Kyle liver enzymes are way elevated again and he lost weight for the 4th week in a row...we have no other choice at this point then to admit him to the hospital and start the Omegaven for his liver. His dr also let us know that it looks like Columbus is still 3 weeks out which scares all of us, we are literally working on borrowed time with the PICC line and they aren't comfortable putting in another central line here. They want Columbus to do it. During this stay we will also place a g / j tube again and hope that we can maybe get some feeds thru the j...hoping...praying....we know what normally happens when we try this but we have to keep trying. He will hopefully be admitted tomorrow but it could be Thursday, it all depends on the schedule down in IR..we are requesting a specific team so it may take an extra day. None of this makes sense to him, he's confused tonight. He's struggling with some anxiety issues....

I am so angry, I can barely stand it. I hate this...he's so tiny right now...I am petrified of another infection...his body is already so compromised.


Heather said...

Sending love to your worried and angry heart.Who could blame you Kate.Seriously.

For now we pray that Columbus gets pushed up and that Kyle stays infection free.

Praying for sweet Kyle and his anxious heart as well... so hard on these little guys.so,so unfair.

Anonymous said...

Kate, what do I say. I know how bad I feel and I know it pales in comparison to how you are feeling.

I am praying that Kyle stays infection free and through some miracle Columbus is pushed up.

Oh Big how I hate this for you!

Hugs and love

Lauren said...

Oh Kate. I wish there were words.

Sending you love,

Karri said...

I can't begin to imagine your range of emotions through any of this. It's been such a long and unforgiving journey.
My prayers continue for Kyle to stay infection free, and for peace in your heart, Kyle's heart, Mark, and your other babies.
Hugs Kate!

Heidi said...

(((Kate))) Im sorry your heart is aching tonight. I pray the J feeds are possible and his levels normalize soon. Sending you lots of hugs and continued prayers for your dear boy-
Heidi & Jack.