March 3, 2009

It’s been a bit of a long two weeks. The good news is that the pneumatosis is gone!!!! YIPPIE! However, the vomiting/retching continue and seem to be getting worse. There are times when Danielle seems to be getting weak as far as the retching is concerned. I do believe she is starting to lose the ability to get everything up. This can lead or turn into pneumonia if she aspirates. She has been experiencing pain and discomfort that don’t seem to subside easily and in these instances morphine doesn’t always do the trick. The nights have been rough the nurses tell me. Tonight she is running a bit of a fever but it doesn’t seem as if it’ll get tooo high. Or at least I’m praying it doesn’t. We did catch a glimpse of a smile a week ago though. After she got done vomiting she looked up at Tony and smiled. I often wonder what goes through her mind. I often wonder how much more she can take. We did have a meeting with hospice the other day. Just trying to get a plan of care put into place. That was a hard meeting to get through but it needed to be done. A great big thanks to Diane for switching hours and staying longer that day….not to mention one of our other favorite nurses Ann for taking on 4 nights a week while working a full time day job as well. The dedication we’ve seen out of our nurses is so appreciated, I can’t even begin to explain what they all mean to us.

Next week we do the follow-up w/the TPN GI from Children’s. My expectations aren’t to high just because of the affiliation with Children’s. I”m assuming at that point we’ll determine whether to stop the TPN and go back to formula or what. The other good news is that since being on TPN Danielle has gained 3 lbs. I can’t believe that she’s actually over 40 lbs now. It wasn’t all that long ago that she was scary thin weighing 26 lbs shortly after dx. I believe this puts her back on the growth chart now.

We never took Make A Wish up on their offer so we are now asking for her wish to be granted. Hospice came up with a great idea to go to Key Lime Cove. Since she does really well in water we thought it’d be perfect. I don’t know that the water will be warm enough for her but I”m sure they have a whirlpool that would be. Plus it’d be great for Anthony too. It’s close enough to home that our nurses could still do their shifts there if they wanted to. So I can’t wait to hear back from them so we can plan a date.

Today was her first day back to school in a month. I think it was enjoyable for her to get out of the house plus it was nice for me to have a couple hours of quiet time with both kids at school. Got some cleaning done and had a nice visit from Lake County Animal Control. Apparently our dogs bark too much for someone’s liking. Oops!!!

Thanks for checking in on Danielle today!

With love,

Megan