The fever has broken

Monday morning, Sophia still had a fever of 101.5. We made a 9AM app’t with yet another doctor at our clinic (who coincidentally was just in the news discussing the infant drug recall). He was a really good sport about getting the background on all of her issues. He didn’t think it would still be her immunizations causing the fever, but did say it was only the first week in which they’d been giving the flu shot (they get a new batch every year), so they didn’t have any anecdotal evidence yet about how that was affecting kids. He had us get a chest x-ray to see about aspiration (which worked out well since we needed one for our pulmonology app’t the next day) and ordered a blood test and urine sample to check for a urinary tract infection. The blood test results were fine. (They were also able to test her thyroid with the same blood draw–which is always good). The urine sample was the challenge. We were back to adhering the plastic bag like we did in the hospital (unsuccessfully 5 times). The first bag leaked out the back, so he sent us home with a second. That one also leaked, so we came back into the office at 6:15PM, right after her two diuretics, to see if that would help. On that visit, the nurse advised she stay on her stomach to prevent leakage. Papa also played airplane with her, which seemed to help–we had a good sample in just a few minutes! The sample was fine, so we were relieved. By this time, her fever had also broken, and it has not returned! We don’t know the cause of it, but she may have been fighting something as she also had a couple of sleepy days this week.

Tuesday we saw the pulmonologist. The main purpose of our visit was to see whether he wanted to go ahead with the surgical balloon procedure they had talked about when we were in before (to expand one of her bronchi). He didn’t know anything about it (and didn’t seem to realize that is why we’d been seeing him). When he found the ENT’s note from her last surgery, he was really dismissive of any concerns. Although this is somewhat reassuring, given that she is fine clinically, I’m of course still nervous that something is being overlooked as the last pulmonologist was very serious about these issues and had talked about several ways to address the two problems with her bronchi (including a tracheotomy). He will follow up with that doctor and our surgeon and get back to us, so we’ll get some answers. I don’t want her to have any unnecessary procedures, but I also don’t want to miss the opportunity to take care of something while she is already under.

The nurse who is supposed to come to give Sophia her Synegis (to protect against RSV) called hacking wondering if she should come this week. John told her it would be better if she came when she was well–I’m not sure how that could even be a question if her job is to bring medicine to vulnerable babies who aren’t even leaving the house to get the medicine! The OT who will teach us baby massage rescheduled for next week too; I’m sure Sophia will love that.

Sophia seems to be spitting up even more these days, so we are experimenting with ways to reduce that (thickening it, using a more easily digestible formula, and holding her upright longer after she eats). John suggested just putting the milk right on her clothes without bothering to put it in her first!

Sophia was in a great mood this weekend; it was fun to have her so happy and all smiles. You know she is really happy when you get a smile and she sticks out her tongue! She got to sit outside and get some fresh air watching us rake. She also got to spend a little time with Grandma while John and I went to the movies. She was also a good sport about trying to sleep through a very giggly game of Clue with Aisling, Siobhan and Siobhan’s best friend Sage. One of Sophia’s favorite things is waking up and finding someone there to pick her up; she gets all smiley, sticks out her tongue, shakes her arms, and kicks her legs; it is very sweet.

We are still experimenting with “tastes”–no real solids, yet. This weekend we tried peas. It wasn’t a huge success, but we’ll keep trying. Apparently, it takes several introductions to develop a liking for these things. I’m not sure how all of this new eating will go in the hospital, will she get a hospital tray of a pureed vegetable to try each day? I imagine there will be a little break in all of this with just continuous feeds while she gets better. We have just two weeks before we go in, so we are spending lots of time snuggling and playing. It will be hard to have her attached to all those cords, tubes and wires again. We’re finally used to her being transportable.