Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: May 1, 2002
BMT + 29
Robert’s numbers looked good again today, except that his bilirubin was up to 16.3, a jump from 12.2. Robert’s GGT was slightly down from 297 to 265. He seems tired today and very bloated. Mark and his father, Fred, are concerned about Robert’s sodium levels; at 147 he is above the recommended high of 143. He is retaining a lot of fluids in his tissues. He is receiving albumin right now and then he will receive lasiz in order to pee out a lot of the liquids in his system. Mark and Fred would like to see the sodium level drop down. Hopefully Robert would be less thirsty and his body would stop retaining so much liquid. It may also help his blood pressure which has been very high for the last 24 hours; running around 160/100. If his blood pressure does not come down they will have to move us to the ICU to put Robert on a blood pressure medicine dripped through his line. They cannot do that in the bone marrow unit.
Mark said Robert was pretty cheerful yesterday. He was talkative and watched videos. This is a good sign. The kids at home have been eating great with Grandma Jody in town, Grandma Rita and all the nice delivered packages of already prepared dinner. They have hinted they were getting pretty tired of the same old things each night. The variety coming through the door has been great for them and rough on the one who is staying in the hospital, eating hospital food every day.
Counts
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).
