Hi everyone, thanks again for all of your support - it is really amazing and helped to lift our spirits through some very long days. We're hanging in there and just taking things one day at a time.
The good news is that we have convinced Sam's medical team to coordinate their exams/treatments to allow him to get as much sleep as possible. The bad news is that his heart rate dropped very low all night long and the alarms rang constantly which resulted in more tests and exams. The fun just never ends around here! We now think that the low heart rate may just be his base line when he's in a deep sleep and doesn't necessarily mean anything. So, we're now watching that too.
His breathing is improving and his struggle for air isn't nearly as bad as it was on Wednesday - bu it still requires him to use far too many muscles in his chest, neck, and back to breathe. He is still on the high flow oxygen, and they had to turn it up to 50% (yesterday it was down to 35%, our goal is to get it at 21%) and they had to turn the volume back up to 5 liters (we were down to 3.5 liters yesterday). But, they cut the dosage of the albuterol breathing treatments in 1/2 (from 10mg to 5mg) and it only takes about a minute to administer the new dosage (rather than the incredibly torturous 10 minute treatment before). We are still doing it every 3 hours - we need to be able to stretch the treatment to every 4 hours before we can go home, and we will continue giving him these treatments at home. He also needs to be off the oxygen before we can go home...so we're here definitely until Saturday, possibly longer. Not really sure at this point. Brad and I haven't left the hospital since Wednesday, we've become quite familiar with the place by now!
Sam's appetite has improved and we're giving him anything he will eat right now. His meals have mostly consisted of pedialyte, yogurt, applesauce, pudding, ice cream, and crackers. But, his eating and drinking has been good enough to stay off the IV and they've now fully removed the IV from his arm. He now has full use of BOTH hands, so we are very happy. He had plastic tubes on his arm to prevent him from pulling out the IV - needless to say, he was not happy with those. He also thinks that all of the cords that are grouped together on his back and hang down behind him are his newly-found tail. He is playing with it the same way he plays with the dog's tail, he's very funny!
The oral steroids continue to make him hyper right after he gets the meds, but we enjoy these precious moments of smiles and laughter. Last night he played with a plastic cow toy for a long time while eating some crackers - he ate a few crackers and then fed the rest of his crackers to the toy cow. Here is a very cute picture of him putting crackers in the cow's mouth. :) In spite of everything, he still manages to make us laugh.
We're hanging in there, trying to get some sleep when we can. We've had some nice visits with friends and relatives who've stopped by, brought us dinner, and kept us company. My mom got Sam a terrific mylar balloon that he has used as a punching bag and loves watching it pop back up each time.
We'll continue to keep you updated. Thanks again for your support, it means so much to us. We apologize that we haven't returned a lot of your phone calls, but cell reception in here is quite spotty and it's hard to hold conversations in between Sam's crying and his many many exams/treatments. Email and texts are the easiest way to communicate right now. Thanks for understanding.
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