16 Mar Update
The port removal itself actually went well today, despite the fact that we were rushed off to it unexpectedly this morning. All night long, I would ask the nurse if she had heard a time from the OR with no luck. At 5am,...
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16 Mar Update
Just a quick update tonight to let y'all know that we still don't have an OR time for tomorrow. Since removing his line should be fairly quick, he will likely be squeezed in between procedures tomorrow, and our time could change anyway. He...
15 Mar Update
We have had a pretty quiet few days, as expected. Keegan has tolerated an increase in the volume of formula to 45ml/hr during the day, and last night, we ran 20ml/hr overnight ...
12 Mar Update
Keegan had a very rough night between the blood, diuretics, "clean out" formula for the scopes, and two enemas. He tolerated the blood well and needed it for the scopes. They took a LOT of tissue to biopsy, and he bled for a...
10 Mar Update
It's been a very busy day, and we still have a long night ahead of us. Gray left early this morning to go back home for work. Keegan did well during the cath. They decided to do general anesthesia rather than sedation...
10 Mar Change of Plans
We had a slight change of plans today. Keegan was scheduled as the third cath of the day, and the transplant cardiologist insisted on Kegan being transfered to the transplant or cardiology floor post-cath. Well, the bed she had reserved for Keegan somehow...
09 Mar Update
We've had a pretty quiet weekend, gearing up for a very busy week ahead. So far, Keegan has tolerated the Elecare formula well - no vomiting or increased diarrhea. In fact, he went 24 hours without a stool at all, which scared me...
07 Mar Update
Keegan had a very long day today. He slept pretty well overnight - just the usual diaper changes, vital checks, and venting his g-tube to ease his discomfort. He seems to be quite fond of the super-soft mattress in his crib here. ...
06 Mar Keegan Update: Live from Boston!
Hello All…This blog update will cap off a very good but long day. Keegan slept well for the most part last night. He woke up a few times with some air that needed venting but there was no vomiting. He woke up...
05 Mar Safe & Sound
We all made it to Boston safe and sound on one of the coldest days of the year. I got here before the boys did and started the long process of getting the team here updated. Gray and Keegan made it to the...