Well today has been fairly uneventful for Alyssa. She had the drains removed from her shoulder and her little baby sling taken off. She is already trying to move her arm around, but it’s going to take time for full use of the arm to return (if no permanent damage has occurred of course).
There was a moment of concern according to Donna when they thought her long line had become occluded, but after a few tries they got it running again OK. We will probably be worried until a few weeks after the line comes out, assuming that it lasts the full course in case she has a recurrence of infection because of it.
Liam and I went to visit Alyssa tonight, as I have been at home most of the day trying to do some work. Of course, Liam would much rather play with all the interesting toys in the playroom at the hospital and their cars than Alyssa!
I’m finding working rather difficult at times, as I had forgotten how fussy Liam can get when it’s just the two of us at home and we had really hoped that Donna would be home with Alyssa to play with him while I caught up on the work I missed from being in Melbourne. I have a lot more late nights ahead of me I think 😦
I have had emails today from some people who also have children with GSD. Two of these cases were both discovered on day 4, the same day we realised something was wrong with Alyssa. This has made us start to think again about when she first had an infection, as we had begun to assume that was the problem with her feeding right from the start, but it’s looking like maybe this is a common thing with GSD 1a babies.
If we assume that her initial lethargy around day 3/4 was due to the beginning of hypoglycaemia, that leaves us with two instances where we think she has had an infection. Given that the first of these was some time after she had a cannula placed in her right arm, it’s entirely possible that this is when the infection started, and the 5 day course of antibiotics she was given in Melbourne was enough to subdue, but not get rid of the infection.
She had been off the antis for a few days before we became concerned about her arm, although we had noted on Nov 4th that her arm was weak. Also, a few days after she came off them, she had a day or two where her temperature was somewhat elevated, although not to a degree that the RCH doctors were concerned.
Obviously, none of this is conclusive, but what are the chances of having multiple infections within days of one another as opposed to one persistent infection that was not completely eradicated?
Nevertheless, we are going to follow up with the metabolic team at the RCH and get them to look at her blood work done here in Launceston. The told us while we were in Melbourne that her neutrophils looked normal, which would contra-indicate GSD 1b, but in light of this infection, we think it’s best to have the results re-checked.