Wednesday, December 20, 2006

And the count down begins.........

It's 5 days before Christmas and where are we????? We're back in CHOP.
Yesterday we came down here for clinic for Jack to get his usual blood work and he was due for IVIG. To everyone's amazement Jack's counts have gone up quite a bit from last week however, his electrolytes are not good. He was in desperate need of Potasium Phosphate and Magnesium so it was decided to give him what he needed which kept us here until 5:30pm and we didn't get home until 8:00pm. He was very tired when we got home and just wasn't feeling right. When he woke up this morning he was complaining of stomach cramps which isn't all that unusual and we didn't have that great of a night with stool output. Jack actually said to me, "mommy, I think I'm dehydrated". Now, for my 4 year old son to say that to me made me really check him out and know he was right. I got him something to drink, got Christina off to school and sat with him for a while before finally making the decision that I really should take him back to the hospital for fluid. Not to mention that he really is not doing well nutritionally and I am at a point where I can't do it myself and I know that he really needs another central line.

Once I got down here to CHOP a plan was in place to get a line put in tomorrow and start IV nutrition and possibly go home Sunday with TPN. I was already beside myself that I was coming back here and that just put me over the edge. I know he needs this, but I don't have a good feeling about putting the line in and rushing it for tomorrow. I talked with Dr. Bunin several times and she told me that we don't have much of a choice and Jack really needs this and that his phosphate is so low that he could actually have a heart attack with that low of a level. My arguement began with why couldn't we plan a line for next week and for the rest of this week give him what he needs in fluids and tank him up and then re-admit us next week with a full plan in place including bringing GI back into the mix and having Jack get another scope to see exactly why he is loosing these electrolytes. After much debate Dr. Bunin agreed to tanking Jack up sending us home Sunday and coming back either Tuesday or Wednesday.

It's very difficult to make these decisions. I've spent more of today crying over which is the right choice, which is going to put Jack at less of a risk? So here I sit, tired of coming down to Philly, trying to understand why Jack's gut issues just aren't getting back and worrying if this is the right choice, not to mention Christmas being 5 days away and just wanting to be home.

So the big question is, will we be home for Christmas? Well right now it's yes and as long as Jack behaves and doesn't spike any fevers we will be in the clear to go home. I've gotten as much as I can done for the holiday but still have some odds and ends to finish up and if I don't get it done, Oh Well!!!!!!

I really need that Christmas miracle, so with all the prayers you have been sending our way, please pray for the miracle that Jack will get through this and that his nutrition will get better.

Thank You and God Bless