Friday, October 9, 2009


4 a.m. Doernbecher, in-patient.   (This is, hopefully, going to be a quick update.)
Okay, so it’s been an up and down week.  We’ve gotten a couple of pieces of really good, even great, news.  Meanwhile, we’ve been running back and forth to the hospital more than we’d like.
The good news, first.   On Wednesday, Ethan had an MRI, EKG and hearing test. We got the results of the MRI and there was no detectable waste (GAG) buildup in his brain, and no hydrocephalus (water on the brain).  That was fantastic news, and tells us we may have caught this disease early enough to avoid significant neurological damage.
The other good news.  In an hour and a half meeting with our transplant doc, Thursday, it was revealed that while it isn’t inconceivable that the hospital stay for his transplant may be six months, it's more likely to be in the 28-45 day range.  If everything goes “relatively” smoothly.  Sarah and I have so been planning for a six month stay.  That may still happen.  And the time here will certainly be no less critical and intense.  But it’s such a relief to hear that our time in hospital will likely be shorter than that.
On the downside, Ethan’s been back and forth to the hospital this week.  Sunday, we were changing the dressing on his port (central line) and noticed a small red area at the insertion site. We called and they recommended bringing him in so they could pull a blood sample to check for infection.  So, Sunday Ethan, Sarah, Grandma L and Caleb headed off to the emergency room--while I headed off to do the grocery shopping.  The hospital folks pulled the sample, but said they wouldn’t have results for 24-48 hours.
Wednesday, Sarah took Ethan in for a sedated MRI, EKG and hearing test.  The hospital had said they'd call if the test was positive, since we hadn't heard on Wednesday, I figured it was negative and we were out of the woods.  But while Ethan was in for his tests, we got word that Sunday’s sample showed an infection in one of the lumens in his port, and he’d have to be admitted.  An hour later, we were told that the positive result may be a contaminated sample, and that they were going to take another sample, and we could take him home.
Thursday, was infusion day.  The infusion went well, but Ethan was in an isolation room all day, due to a cough and runny nose that mysteriously disappeared the minute we got to the hospital.
Thursday night/Friday morning at 1230, we got a call from the hospital that Ethan’s second blood sample had come back positive for an infection, and he needed to be admitted.  Got to the hospital at 115, seen by many docs.  They need to run some tests to determine what type of infection he’s got, and meanwhile have started him on some IV antibiotics.  They say we’ll probably be in here a couple of days while they wait to find out what type of infection and how he responds to the initial treatment.
In other news, the hearing test came back showing mild to moderate hearing loss in the upper tonal ranges.  They tell me that means that he can hear okay generally, but will likely miss some soft sounds like s and sh.  (Hmm, all kinds of cuss words we don’t have to worry about him picking up?)  They’ll reassess after the transplant, should be correctable with hearing aids and speech therapy.
One final piece of news.  We’ve got a confirmed admit date for the transplant.  Ethan will go in on Wednesday, Oct 21.  The preparatory regime will be 8 days.  So it looks like the transplant will be on Thursday, the 29th.  Just a note, they don’t allow flowers on the transplant ward.  But since the kids are there for a long time, cards, posters, and things to decorate the rooms are much appreciated.
Haven’t gotten the results from the EKG yet, and I could write reams trying to summarize the meeting with Dr. Nemecek.  But that’ll have to wait.
G’night.

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