Day 4

Today started out great! Jack wanted to play, he ate and got out of the bed for a while. It seems soon but moving around is the best thing he can do. It helps to push the drainage out. We had planned to take him to the children's atrium today but they have shorter hours and it didn't work out with lunch and nap. He woke from his nap in an all out fit. All the nurses keep reassuring me that they all are in this much pain and this miserable and he will get back to normal. I believe them until the next fit happens. It's just so hard to see him like this!

Jack has confirmed chylous drainage so he is on a full fat free diet now. I'm having a hard time with it because many of the good for you things we all eat are not fat free. The nutritionist will be back tomorrow so I'm hoping she can help me out with things to feed him because there don't seem to be many options on the hospital menu. 

With the drainage the doc told us to expect at least a month stay, which I had planned on but hoped we would get the nice 2 week scenario the staff talks about. We always seem to take a permanent residence here. 

Dr. Bradley came by and said Jack is draining a lot, which didn't surprise me because I've been keeping track of it as well. He also said it needs to taper off or they may have to do something. I know what that something is and it is not a good something. Just have to trust that whatever happens is for the best for Jack. 

Another bit of not so thrilling news is that he will go into cath lab this week to have a PICC line put in. That requires full sedation and intubation. I guess it gets me upset because I requested he get one in pre-op and was told he didn't need it. Granted they didn't know how long we would be here or how badly he would drain but I should have demanded it. Always trust that parental instinct!!!

On a good note we were moved to a new room since we are always here for so long! It is huge and we have a great view of the city and the Ravenel Bridge! Another really good note- I have to say that my children have the greatest father in the world! He is so attentive and nurturing to our children. Asks the docs and nurses questions about Jack and his care. And he always checks on me. Luckiest girl right here!!

A picture of Jack before it all went south today!