One Week Out

I'm having trouble coming up with a good title for this blog entry. I don't usually update when Maddy is not in the hospital but thought I should this time. I wouldn't say things are going exactly smoothly at home but it's still better than being in the hospital. Many people are asking me how Maddy is doing and thats a really hard question to answer. Most times I say "taking it one day at a time", but that doesn't really give anyone a picture of her health. So here is the rundown one week out.

The A-Vap machine, or what ever of the three names people call it at any give time, is working well for the most part. We had a few bobbles the first few days but have most of those kinks worked out. Maddy still panics a little every time she has to put it on. She says it makes her feel like she is suffocating, and of course that it her worst nightmare. It also ends up blowing air into her stomach throughout the night. She wakes up with a painfully bloated abdomen. Usually this would be no big deal but they made her get a procedure done shortly after her transplant to keep her from having acid reflux into her lungs. Here is the blog entry from that day.  Basically they put a zip tie around the top of her stomach to keep the acid from regurgitating into her esophagus and then down into her lungs. Problem is that zip tie keeps everything down there. Maddy physically can not burp! So each morning to get the air out of her stomach she has to make herself gag and dry heave the air out of her stomach. Sorry to be so graphic but this is how she has to live now.

Speaking of her stomach, that is the next issue she is having. Not sure if it's all the air being pumped in there each night or just that fact that she hasn't been able to eat right since mid January but she is not doing well on the nourishment front at all. One of the big things the Co2 poisoning did to her is eat away at a bunch of her muscle and what little fat stores she had remaining. She was already very underweight because of all the infections and this latest episode has done her in. We are having trouble finding food she can tolerate. Everything seems to hurt her stomach. I'm lucky to get 600 calories into her on any given day. On top of that she just has no appetite and when she does try to eat, something always seems to go wrong. Take last night as an example...

Her cough has increased quite a bit lately. Yesterday it was a dry cough, seemed like she just had a tickle in her through that would not go away. I'm not talking just a few hours either, she was coughing non stop... every waking moment... of the entire day! These dry coughing fits always make her gag as well, so all day her stomach was heaving as if she were puking but she wasn't. She was barely able to choke down a shake at lunch. By the time I severed her dinner she couldn't stop coughing long enough to get in one bite. She literally sat there with the plate on her lap for two hours trying to eat. She finally gave up and asked for something lighter and in the next 45 minutes of trying was only able to get down two bites.

I don't want to be pessimestic but it's getting harder and harder to see some kind of silver lining. But even through all of these setbacks Maddy seems willing to continue the fight for every breath. I'm sure there is much more I could write about here but I'm having trouble getting it all down at the moment. As always thanks for the prayers and please continue.