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| Kathleen's Diary: May 1, 2002-part 2 |
the international society for
mannosidosis & related diseases presents:
Robert's Road to Recovery: the second
transplant
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| Kathleen's Diary: May 1, 2002-part 2 |
BMT + 29
For all of you update junkies, I know I got a little off because I didn't
send an update last night. I sent one this morning instead. I am going to send
tonight's update now instead of late tonight (usually between 1:00 and 3:00
a.m.) because Grandpa Fred and Grandma Jody are spending tonight with Robert.
You can't ask for more than your own medical staff. Robert has been having
one-on-one nursing coverage for the last week. Now he is going to have his own
nurse, doctor and nurse practitioner. You may each realize what that means; yes,
I get to spend an evening at home with my husband and four other children. I am
sure the first event at home will be a family meeting to respond to all kinds of
current requests that take both parents' input for an answer.
Robert slept, slept and slept all day. I am not sure whether he wore himself out
yesterday or his dilaudid (pain medication) is too high. We may try to lower it
tomorrow and see. The two big issues today have been trying to get his blood
pressure down and lower his body fluid level. The fluid or hydration level is a
real balancing act, too much and his lungs get crackly and too little and he
gets bloated and his sodium levels get too high.
The good news is that Robert has not had a fever above 38.1 for over 24 hours
(knock on wood).
I had to stop for a minute to help take vital signs and Robert's temperature is
38.4 (I wrote too soon about lower temperatures).
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