I took Danny in to see Dr. Kasper this morning. He still has alot of tone, a high heart rate, and crying out more then not. Good news for the day is his white blood count is down so the antibiotics are working, but they also are "running" through him if you know what I mean. The diaper genie is getting a work out, LOL! We are increasing the clonezepam (muscle relaxer)again, but only during the night. With Danny tolerating the Bipap better increasing the med at night seems to be the best route, that way if his airway would collapse or obstruct he has the bipap to help him out. I'm crossing my fingers it's not going to be to much of an issue. Yesterday he woke up gagging and wretching at 5:30 and this morning he was up early too and miserable. So that's why I took him in. Dr. Kasper thinks it's more of a snowball running down hill with him. Danny having more tone (for whatever reason, maybe pain) then is increasing his heart rate, which makes you breathe faster, and Danny can't get rid of excess air (from breathing faster) due to the nissen so he retains it all in his little belly causing him to gag and wretch. ARGH! So I have made the call for Ortho to call me back about scheduling the hip surgery. I know it could be the cause for his discomfort so I am going to start ruling things out. I wish he could at least point to where it hurts instead of me trying to figure it all out. I am going to talk with one of friends who just went through the surgery so I'm more informed and comfortable with the cares afterward. That's my biggest concern is the after math as I have full confidence in the ortho doc doing the surgery. I also had Dr Kasper do some more labs while we were in checking out the level of his seizure meds and a full metabolic panel to make sure he is getting enough in his feeding that his body required. With Danny only getting 16oz of food a day I need to watch that close so he doesn't lack anything his body needs.
Tomorrow is the BIG day on our Walk/Run with Make A Wish. Thanks to all the supported our team "Touched by an Angel". I wasn't able to get the total count before they closed the site but I believe it was VERY close to $1300.00 I will post the total when I see it tomorrow. You ROCK, thanks again for helping make Wishes come true for these kiddos. I will post pictures after the walk. The weather looks like it will hold off for us during the walk but for the afternoon when Dan has to race looks like he might get damp.
Thanks again for your support and following our story. Take care!
Where Are You Christmas?
1 day ago