Monday, April 20, 2009


Well, the official word is that it is pneumonia. It's a little scary that it is in the same place, her right lobe, as before. They say it is a concern that it could be due to aspirations, which would be terrible, and wouldn't make much sense. She's never had an issue with aspirations before, so I don't know why it would happen now, especially with no changes that would cause it. So, the theory is that maybe we didn't give her long enough to heal from the last pneumonia before putting her through another cath, then another cath - all within several weeks.

When we get home I need to get her in to see her pulmonologist. I want to make sure that we give her plenty of time to get over this before doing the surgery. We might even consider waiting till June. The only negative would be that it would probably start a domino effect - moving the rest of her surgeries back, as well.

I am very thankful that it presented when it did, versus several days later. If she had the Fontan, and then the pneumonia happened, it could have been disastrous. It's during times like these that I believe she is really meant to be here. She has racked up quite a list of things that could have easily gone the other way (the way we don't want to go) yet, she has survived everything.

So I'm not rushing her out of here. I think the more IV meds she gets, the better she'll be in the long run. They said that she has to go 24 hours with no fever before they will send us home. She had a fever Sunday night at 6pm. They gave her Tylenol and she went without a fever til 12:30pm today. 18 hours. So close! Hopefully a few more doses of the IV meds will do the trick. I do know that she's starting to feel better. She finally started waving Hi and Bye to people today. And blowing kisses.

I gave her a little shower with the hand held thing tonight. While I was doing that her nurses changed her bed sheets. I guess everything made her feel good, because she perked right up and really fought going to sleep. She's definitely coughing a little less. Last night she woke me up at least once an hour, sometimes more. I'm really hoping that tonight is better.

I'll have more tomorrow. Thanks for all your support!!!


Pam Walsh said...

Oh my. I am so sorry. Poor little girl. She is a fighter though. Hope you can come home soon. Let me know if you need anything!

Susan said...

I am SO SO sorry. I fully expected to log on and see an update on the surgery and was shocked to see all this had transpired. I hope she kicks this pneumonia quick and the surgery can go forward in another month or so. Hugs. You are such a great mom. I am sure one day she [b[b]will[b] know all of what you've done for her, being her loyal defender warding off unnecessary sticks just being one of the many, and how very much you love her.