New Blog for Nathanael

We recently started fundraising with COTA to cover Nathanael's medical expenses, so updates about him will be on his new blog from now on: Please check out the blog, pictures, and opportunities to help, and feel free to pass along the link to others. We appreciate your concern!

Tuesday, November 30, 2010

Another Hospital Stay; Fun at Home

After about 10 weeks at home, Nathanael and I went back into the hospital on Monday. He had been showing signs of something not being right by mid-week, so it was no surprise to us that when he was seen in clinic on Monday they decided to admit him. He did also have his first fever in quite awhile during his check-up. Unfortunately because he no longer has any central lines, he quickly became a pincushion (although he didn't bruise nearly as easily as last month during his regular blood draws). He had blood drawn in clinic, then an IV was put in an hour or so later, then he had another draw on Tuesday morning, and an injection in each thigh on Wednesday (at least he didn't have labs drawn that morning, as everything had looked good the day before). He also had two days of heavy IV antibiotics, which is standard practice for BMT kids who spike a fever, and in his case, since we were convinced he had a UTI it was the best way to start treating it early.

However, his UA (urinalysis) was clear (showed no signs of infection), and NONE of the cultures they collected (urine, blood, stool, nose, armpit) were positive for ANYTHING. This is good news of course, as he has none of the viruses they test for, but it doesn't help us really know what's going on with him. Ugh. They suspect a mild GI bug, but he only vomits when something gags him (oral meds, feeding), and in our experience with Jamison, that's not the way it usually works.

So after staying in the hospital for just over 48 hours (including 2 nights with not much sleep for either of us) we were sent home. I'm thankful for that. We also had a nice evening with some friends on Wednesday who brought yummy dinner and then fixed our ailing garbage disposal - yay! They had expected to just spend time with Brad and Jamison, but it was fun for all of us, and Nathanael smiled at everyone, though he still looked pale and blotchy all over. We are now just trying to keep the little guy hydrated, rested, and getting all his medications so he can deal with whatever this is without being readmitted to the hospital.

The very good news is that despite this recent hospital stay, our medical teams have reevaluated his medication list, and have decided to stop two medications now, and may stop one more in a few weeks - YIPEE!!! That leaves us with 7-8 meds in the morning, 1 in the afternoon, and 6-7 in the evening - a BIG improvement. The one in question will be decided upon after more blood tests are done next week. If his mitogens and antigens look like they are responding more normally then we may be able to stop his antifungal med (voriconazole). His immunologist here has also ordered his T and B cell studies to be done next week, since his last test was in early October, and his steroid dose has dropped significantly since then, AND because we don't expect to go to Cincinnati for a check-up until March (we had expected to go in January, but we won't do that unless his condition worsens or is cause for concern). I hope that we'll see a major improvement since his steroids have been cut back, but we'll just have to wait for the results.

In other exciting news our little guy has learned to pull himself up to standing! This is a huge development for him, and though delayed, he is continually making progress. He can also sit himself back down, which is a good skill to have. :) I think he loves the view from above the crib or pack n play rail.

Jamison helped me decorate for Christmas this year, and we've had a lot of fun getting out the tree, ornaments, stockings, and even putting lights and bows on the shrubs out front. He is quite the little helper in so many ways, and even our tree bears the mark of a height-challenged lead decorator (75% of the ornaments are 2-3 feet from the bottom!). He also seems to have found a new favorite book for the seaon, "The Little Drummer Boy" (one of my childhood favorites). We even sang it while playing his drums the other day (thanks Uncle Jason for the cool South African drum!).

My almost-4-year-old (who regularly asks for things for his birthday - he seems to think it's next week, not in several months!) is starting to write his letters. I've included here a picture of him showing off the word 'pentaceratops' on his doodle-pad. He copies dinosaur names from the back of his puzzle pieces. I feel like I should be teaching him to write, but he's practically teaching himself!

Oh, and we did have a nice Thanksgiving together - just the four of us, but LOTS to be thankful for!

1 comment:

  1. I'm so glad you guys are back home after your hospital trip. And happy belated Thanksgiving. I'm sure you enjoyed your quiet family Thanksgiving. It's sometimes fun to just be the four of you.