baltimore update 1
Colleen is staying in the hospital at Johns Hopkins tonight...and possibly for the next few nights too...my impression from our sister Leslie who stayed with Col until about 5:00 this afternoon and called on her drive back to Ocean City, and my impression directly from Colleen on the phone a bit later are these:
1. "NutriNellie" was successfully implanted this morning...Col was given a twilight amnesiac during the surgery so she has no memory of the procedure itself but, post-surgery, has been experiencing pain for which she's receiving pain medication... When I talked with her around 7:00 this evening, Colleen was feeling apprehensive, ie, just plain scared, about the first use of NN, scheduled for 8:00 tonight... Every cell in me wanted to be there with her...
2. Her medical caregivers there--her primary pulmonologist, Dr. Mathai, and a kidney specialist new to Colleen and whose name I don't yet know--seem to be rallying around her with energy and focus and wasting no time in doing all that needs to be done to help Colleen be unconditionally accepted as soon as possible onto Pittsburgh's lung transplant list...Kidney function tests began this afternoon and will continue tomorrow...the possibility of a kidney biopsy has been raised in order to determine whether or not the scleroderma has begun to affect the kidneys...pray not...
3. Dr. Mathai spent up-close-and-personal time with Colleen today and told her he would be "with her"...the whole way...Baltimore, Pittsburgh, and all points in between...
Leslie took copious medical notes, which she will turn over as soon as she finishes typing them up. Sean, our youngest brother, is standing by to drive down to Baltimore to pick up Colleen as soon as she's released...Friday? Saturday?...the kidney doctor mentioned he may want Colleen back down in Baltimore next week...
more to come
PS: As of now, NN is planned for nighttime only, with regular eating during the day
PSS: Per Leslie, the GI surgeon who implanted Col's NN was also extraordinarily kind and attentive.
col, how loved you are...Those sibs of yours are fierce. The professionals that are helping you get to PGH are amazing and restore one's belief in our medical community. Keep going forward...there is no going back or staying still...remember to breathe even if it's all in your head!
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