Sorry for the late post–I forgot my laptop at the hotel, which made for something of a long day. Thank goodness for my new cell phone, which at least can surf a decent chunk of the web. But I’m back at the hotel and ready to update while Ravi is on duty with Elanor.
Elanor’s feeds have been going very well today (*knock wood*). We figured out that she NEEDS a solid burp in the middle of her feedings and when she doesn’t get it, she throws up. Having figured that out feels like a victory. She has taken every feed fully today so far, and we’re keeping our fingers crossed. A few more days like this and the feeding tube can come back out. The other major victory today was that after Elanor had thrown up, I offered her my breast and she actually breastfed for a minute or two…not much, but enough to really raise my hopes again that we WILL someday get her on the breast and I won’t be pumping every feeding until her first birthday.
Today was VERY busy for Elanor.
I met the new team on the Pediatric Floor. It’s about the same size as the PICU team…maybe 8 or so people, a mix of the attending, residents, and medical students as well as the nurse and I. The difference is that I have more information than the nurse, so I find myself interjecting more when it comes to how her night went or how her feeds are going and how she’s peeing/pooping.
At morning rounds, we discussed my major issues of concern…
1-That I felt like her high blood pressure wasn’t being taken seriously enough and that her BP wasn’t being checked often enough.
2-My concerns about the seepage on the femoral line
I didn’t really feel happy about how they were handling the blood pressure until I talked to the kidney doctors later in the day, but I did get the concession that her BP would be checked every 2 hours. I had to enforce it a bit with the nurses, but I made sure it got done.
The femoral line is tricky. It was explained to me that there’s a risk/benefit to changing/checking the line every day, and they would feel better doing it every other day because there is always some risk of infection from over exposing it to the room and such. So it will be checked yesterday. We also found out that it only needs to last a few more days for ID, which I’ll talk about below.
So today I met with the kidney doctors, the liver doctor, Infectious Disease, and neurology as well as the regular team.
The Kidney doctors have pronounced her a problem case. I was surprised to find out that they’re the ones who will deal with her blood pressure issues, and that they’re the ones making the calls there, as I sort of imagined it would fall under the realm of cardiology or hematology. Anyways, they’re concerned because all of the usual reasons for hypertension in babies that have gotten sick have resolved or are almost resolved, and rather than getting better, her hypertension has been getting worse over the past 48 hours and they’re just not sure why. They are contemplating changing her medication entirely to see if that will help. Long term, she will need to prove stable on a specific dose of medication before Nephrology will sign off on letting her go home. She will probably go home on medication and then be weaned off it slowly over a course of weeks/maybe a few months…during that time we’ll need to get her blood pressure several times a week; they mentioned a home nurse coming to get it, us going to the pediatrician and getting it in their office. I guess we’ll be seeing a lot of them after she’s out.
The point that they made about the blood pressure when I expressed that I was concerned that the highs weren’t being taken seriously enough is that we are no longer in the ICU and the meds that they use in the ICU to get immediate reactions from her BP aren’t really great for her. Because they are trying to find a long term solution, we have to be a little more tolerant and patient. They also said that higher bps were ok in the short run, and what they worry about are sudden spikes. One of the reasons I want her bp checked frequently…to find the spike earlier not later.
The Liver doctor said he doesn’t think that anything is wrong with her liver as the numbers related to the operation of the liver have mostly returned to normal. However, she still has some high numbers with one of her Bilirubin counts (not the one that requires phototherapy) and they are putting her on a 5 day course of medication and then doing some kind of flush where they’ll watch her kidney’s process some chemical to tell if she has a really rare disorder. They’re 99% sure she doesn’t have it, but since she’s there, and they can do the test, they’ve decided to do it. I made sure that they got the Nephrologist’s okay, since it had been Nephrology that had stopped Neurology from doing a certain scan with contrast about a week ago because her kidney’s couldn’t handle it…I wanted to make sure this type of test was okay, which Nephrology said it was.
Neurology dropped by and said they liked how she was doing. We have an Ultrasound on Wednesday and an MRI next Monday. No real news there, except that in the last ultrasound they saw some of the blood from the bleed starting to reabsorb, which is great news.
Infectious Disease also dropped by. They’ve decided to stop antibiotics on either Thursday or Friday instead of next Monday, mostly because of the concern around the Femoral Line. Since they’re not sure what they were treating, and since everyone is nervous about the line, they’ve decided that 2.5 weeks is enough. She’ll still need to be in the hospital until Monday 12/1 at the earliest though, as the blood pressure issues need to be resolved, and she has the MRI scheduled…which will also allow ID to follow her for a few days once she’s off antibiotics. They had initially talked about repeating her cultures once the meds had worn off, but decided against it as she’s so hard to get blood from and since they feel that if something is wrong, she’ll present it a different way. Ravi and I need to think about this and decide if we want to insist on them repeating any of the cultures for our peace of mind. We also asked them to sit down with us some time this week and talk about warning signs that we might not have known before this…we probably have figured out most of them and will be erring on the side of caution for some time to come, but it’s worth hearing all of it again.
We also hosted some nursing students today, which was okay. They were a little overeager (I ended up giving her a bath today when she didn’t need one, but whatever) but I know working on actual patients is a big part of the learning process.
I think that’s about it for Elanor’s day. A lot of it flew by quickly with all the different doctors running in and out!