Day 5

We are on day 5 here and have yet to actually kill anyone. 

It has been super rough on all of us, especially Jack.  He just is not himself and we are getting tired of having to physically restrain him from pulling at his head. 

2 nights ago they were threatening to send us back to IMCU (intermediate care unit) because his sodium levles were so low.  We had to crush a tablet and force it down him but it worked.  Then the next morning he hadn't had a wet diaper and they were threatening to cath him again but he has a little bit of trauma from the first time they did that and doing it again certainly isn't going to improve that.  They did an u/s and his bladder was very full he just wasn't releasing it.  Thankfully he peed (all over Jonathan I might add) shortly after that.  Twice. 

Jack is also refusing all oral meds now.  Before we came to the hospital he was doing great with the syringe as well as swallowing a pill.  Now though he is spitting everything out and getting anything into him has been awful.  We aren't sure what to do anymore accept pin him down and try to force it down his throat.  It's been awful.  The poor kid is having a really rough time and refusing the meds isn't making it easier.  The only thing that really calms him down is the IV morphine. 

Last night they had to re-wrap his head 3 different times.  It was traumatic for all of us.  I yelled once, cried once, and it took everything in me to not kick someone out of the room.  I have said that she doesn't get to wrap his head anymore. 

This morning he finally wanted to sit on the floor and play for a bit.  He is eating well, though he doesn't like anything sweet, and drinking plenty too.  This morning they finally unhooked his pic line so that's one less cord to worry about. 

Jonathan and I are switching off sleeping.  I'm at the hospital curled up in his crib with him all night, either trying to dose or watching Elmo with him, while Jonathan leaves the hospital to sleep, and during the day I get away for a few hours to rest.  It has actually been working really well and I think saving our sanity.  It is so hard to rest there and of course they have to mess with Jack every 2 hours even if he's sleeping. 

They are thinking they may take him in on Wednesday for the 2nd surgery even if he hasn't had one of his typical "big" seizures.  He is clearly miserable, the risk of infection goes up the longer they wait, they do have 3 small seizures on the EEG along with lots of activity and it all lines up with where the abnormality is.  It would just be nice to get one of the big ones to make sure they get everything.