Rounds today were not quite as fast as yesterday’s, I imagine. We needed to talk about yesterday’s MRI results, the feed concerns and a few other topics.
As I said before, the bone MRI was negative on infection in the bone but had shown an irritation in the muscle that could be infection. The surgery team had taken a look at the leg and the muscle and did not think that there needed to be a surgical solution or that there was necessarily even anything going on there, so they’ll just continue to observe it visually and manually.
We talked to nutrition and discussed the fact that Elanor isn’t waking up for feeds, and doesn’t seem hungry. Because she eats slowly and then needs the rest of her food through her eating tube, she was only getting an hour break between the end of one feed and the start of the next. We got permission to move her feeds to every three hours from start of feed to start of feed. We either had to give her more milk or the same amount of milk and allow them to add some powdered formula to it to give it more calories. Since she’s still fairly weak, I requested that we just supplement my breast milk with the formula…we don’t think formula is evil and it’s not like adding the formula takes away any of the good things about breast milk.
Elanor’s hematocrit(red blood cell) levels were low, so she is getting another transfusion today. Her levels were borderline and her heart rate has been getting faster, so to make her life easier they elected to give her the transfusion.
Neurology had requested another head ultrasound to check the progress of the bleed, and that was scheduled for today.
We would have moved to the regular pediatric floor today, but the head ultrasound and waiting for the results will delay it until tomorrow. Which is fine with me, as I wanted to get a tour of the pediatric floor beforehand and sort of emotionally cope with leaving what feels like a very safe space for one that feels a little less so (less private, more people running around, Elanor in close proximity to another “sick” kid…all stuff I worry about).
After rounds, the Social Worker took me up to the pediatric floor so I could see a room like the one Elanor will be in and talk to a nurse. I feel a lot better after doing so. We have a request (that will probably be honored) to have the “b” bed, which is the one by the window. That way, people won’t be walking past Elanor to get to another kid. I just don’t want people walking past Elanor and seeing a cute tiny baby that they want to come over and talk to, and having her be the far away bed (and we’ll keep the curtain ALWAYS drawn)should limit that. The pediatric floor also has a few “perks” that our floor doesn’t, like a small washer/dryer (we’ll probably still send our laundry home, though) and a kitchen…and we can eat in Elanor’s room (which we can’t in the ICU) which means I won’t have to run away every meal). The nurses seem really nice (and used to slightly freaked out parents). And while we won’t actually participate, it makes me happy to know that they do pet therapy with visiting dogs twice a week.
We have also had a visit from Neurology. The last time they checked her, Elanor was not showing the Moro reflex, but she had improved and was showing it this time. Her grip and suck reflexes are still a little weak and they were explaining that we’ll actually be working with Early Intervention right from the start…they’ll be evaluating stuff like that and helping us, and we’ll peter off services as we no longer need them as frequently. We also already have a follow up visit with Neurology scheduled for January, after we go home (which was news to me, but I’m reassured to hear). The doctor told me that they don’t necessarily expect her to have any language issues because she’s so young, she didn’t really lose anything (as compared to you or I, who have established pathways for speech)…but that’s why Early Intervention will be following up with us for years to come as needed.
Hematology stopped by and let us know that one of us had tested positive for a very mild version of a bleeding disorder, so they’ll want to follow up with Elanor in a few months. Right now they think that all her antibiotics and such could make her results wonky, so they’ll hold off on testing her for the moment.
The head ultrasound has just finished and we’ll get the results later today.