Routines and Requests

Things have been slow around our room the last few days…and it’s a very welcomed change. We are down to vital checks every 12 hours, weight/head circumference checks at noon, meds at 9 am, 3 pm, and 9 pm, and visits from PT (physical therapy), OT (occupational therapy), and speech therapy. Our pediatrician has been wonderful at trying to make our last week here as “normal” as possible. We are no longer bothered by nurses once we get his 9 PM meds down, and we have a green light to let him sleep from 12-6 am without waking him for feedings. Better yet, the last two nights he has actually slept almost that entire 6 hours! He continues to gain weight (at the pace of a turtle), but slow and steady wins the race. Dr. Gore (overseeing his care) sees no need to fortify breastmilk at this point to add extra calories, so we are working with speech therapy and a lactation consultant to try and establish a better nursing relationship.

Yesterday, they drew blood to check a few levels, one being his CRP (c-reactive protein) which rises due to inflammation. Since we were not able to get CSF fluid from the lumbar puncture, the doctors are looking for any indication that the infection has been treated…and his CRP number being much lower (.3 compared to 11) was definitely something to celebrate! Neurosurgery is watching his head circumference measurements closely, and we will either have a sonogram or MRI done before we are able to leave the hospital. Because the sections of his skull are overlapping in a couple of places at this point (due to enlarging because of the original swelling and shrinking due to the dead cells), the doctors are afraid they will not be able to place the sonogram probe correctly to see what they need to see…but an MRI would likely keep us here longer because he would need to be sedated/monitored for 24 hours afterwards. Another possibility would be a rapid sequence MRI, but it takes extreme coordination/planning since you are trying to take pictures of a baby being very still on their own (SLEEPING). If you’ve ever spent any time in a hospital at all, you understand they operate on their own clock and getting a just fed, newly diapered, SLEEPING baby down to radiology and straight into a room is practically unheard of. Please, please be praying that the CSF fluid is draining, the ventricles are no longer larger than normal, and we can officially forget we ever heard the diagnosis hydrocephalus (and the possibility of brain surgery).

We’ve tried every option on the cafeteria menu, and the Starbuck’s in the hospital closed…so we are officially ready to break out of here. 

~Brad and Taryn