Musings of a Marfan Mom

Baby J’s First Hospital Admission

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Baby J started getting sick late in the day on Friday. I’d hoped it was just a small cold, but by Saturday afternoon it was apparent it was something worse. Naturally, we’re still without a pulse ox monitor because of our crappy oxygen company. M had a well visit scheduled for Monday afternoon, so I got J in at the same time.

I’d interviewed the pediatrician last week and this was our first actual visit with him. I’d explained about Marfan syndrome and J’s pulmonary issues. His nurse administered a pulse ox and it showed 82. The pediatrician told me to call J’s pulmonologist but he felt J’s lungs were clear. I asked about RSV and pneumonia and he told me J was fine. Well needless to say, I called Dr. P’s office as soon as we left the pediatrician. Her nurse called about an hour later and was really confused why we weren’t sent to the hospital. It took another 2 hours for her to get ahold of Dr. P, and we were told to head straight to the ER.

Luckily, J’s stats were up to 95 by then. I hoped perhaps the 82 was an error and they’d just send us home, but the doctor ordered a chest x-ray and that seemed to show pneumonia. It was off to the main children’s hospital for us! Unfortunately, I was dumb and didn’t follow my own advice: left the house without packing a hospital bag. This meant I had to put Baby J on the ambulance by himself and drive home to drop off M’s carseat and pick up the bag Mark had prepared for me. It was so sad loading him up on the stretcher :-(

The children’s hospital is the same one where I was treated for pneumonia as a baby, and where I volunteered as a college student. It’s an amazing hospital and everyone involved with our care there was terrific. I felt very confident in our team. My only critique would be that they at times seemed “blinded by the Marfan” as my friend Erin would say: they ordered speech and PT consults for some reason.

We eventually learned that J has RSV (score one for me guessing that correctly), with possible bacterial pneumonia as well. We left with a Rx for antibiotics to fill if he still has a fever today. There was no fever Wednesday so it looks like we’re in the clear as far as pneumonia is concerned. The hospital also requested we do a few other tests:

OT wants us to have a FEES, which is a type of swallow study where a camera is put down the throat via the nose. J still chokes when nursing and they want to rule out aspiration. I had no idea it was possible to check him for aspiration while nursing and I’m frustrated that our hospital in CA did not suggest this test when I expressed concern that the fluoroscopy, which he was sitting up for, might not have captured everything. The FEES will be in March.

The chest x-ray also showed that J’s eventration (his liver is pushing up on his diaphragm, causing a bulge like an aneurysm) is pretty severe. The attending pediatrician and radiologist were both concerned and recommended we see a general pulmonologist for an ultrasound. Apparently the test we had done on it in CA was not the right test, plus there is the possibility that the eventration has gotten worse over the past few months. We’re meeting with a pulmonologist (not Dr. P: she only does sleep) in a couple weeks to discuss setting up the ultrasound.

Finally, J’s head size jumped almost 10%: from 90th percentile to 98th percentile. The attending pediatrician asked that we get this re-checked when we find a new pediatrician (obviously I am firing our current one) to see if her measurements were accurate and if they were, to keep a closer eye on his head growth. A sudden jump in head growth could signal a problem.

Oh, and while we were there we learned J most likely has iron deficiency anemia, which could signal that he has celiac disease like Mark (that was Mark’s only symptom). They went ahead and ran the celiac test and RAST (the dairy allergy test) at the same time as the test to confirm the anemia diagnosis. Hopefully our GI will have those results later this week.

Life is certainly never dull here! At least J is fever free and on the mend. Hopefully he’ll start eating again soon.

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4 Comments

  1. I’m sorry to hear about the RSV. What a crazy pediatrician? Good thing he’s got a smart mommy!

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  2. Hope/wish & pray J gets better soon!

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  3. Oh poor little man — glad to hear he is on the mend. And it sounds like you landed a good team there who all seem to be fighting to get J the right therapies and meds he needs!!!

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  4. Goodness! The feeling of not being able to trust doctors can only add to the stress you’re already experiencing! It sounds like you guys are on your way to getting more information with these new tests than you had before And absolutely get rid of that pediatrician!!!! Baby J is blessed to have a momma with some sense! Keep us posted :)

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