Day +58
WBC 4.9
Max has CSA eyebrows! With all of his problems, it's kind of nice to see the growth of monkey hair that we've been expecting for some time now. His head is feeling fuzzier and his chin has a little soul patch. He is adorable.
Grandma Chick is leaving early tomorrow (Sunday) and who would've thought that a nine-day trip would have included an intubation and an extubation? Oh well, at least it was eventful. Thank you Grandma Chick for all your help and welcome Grandpa Chick. Your separate trips have the nurses talking, but we know all is well.
Max's first full day off the vent (again) was fairly stressful. Of course. But multi-medical-degreed Dr. Sweeney came by and came up with an unusual plan - irrigation and suction. He feels that if the problems in Max's lungs are not asthma or upper airway, the next best guess is to call it a "secretion problem." His best guess is that when on the vent, there is better access to sucking out Max's secretions. But when off, with less access they get worse. So he wants Max "less dry" because it only makes his lung secretions thicker and tougher to cough up. This is difficult because they are giving him diuretics now to keep his fluid retention down from steroids. So he changed his breathing treatments and he did turn down Max' s narcotic. As he explained, even over-the-counter cough suppressants are narcotics. Even though he's surely uncomfortable and cramping, he's tolerating less pain medication well because it's being balanced with lots of . . . bottles! That's right, the best prescription ever! Max has been cleared to drink and drink often (water or pedialyte), to make up for loss of water from breathing and from not being on the vent. So far he is sucking down bottles and it's going a long way to making him more comfortable.
Late tonight, they brought in a new crib. It is a super-spiffy, and we've heard super-expensive, bed that has percussions (it actually bounces), and can rock back and forth and side to side (he's velcroed into some padded restraints). The idea here is to keep Max moving, vibrating, etc. They want things loosening up and hopefully the bed can help. But it is LOUD. Imagine an outboard motor or pneumatic drill going off under your mattress, and that's what it's like for Max.
The doctors are trying so hard to figure this out, and this new plan is welcomed by us because at least it is something new, and the treatments are very benign. When the doctors here feel confusion and frustration, it's so difficult. We feel we are here because this place has the most experience with Hurler Syndrome and transplant, but even so we've learned that all of these kids have individual issues, some startlingly unique. Sometimes it feels like we are beating our head against a wall that has only new walls being built behind it. But we remember that everyone has Max's best interest at heart and that if there was an easy solution, it would have been tried. It definitely keeps us going to see them thinking, and trying, and not giving up.
Thanks again for all your support,
--mike
Max has CSA eyebrows! With all of his problems, it's kind of nice to see the growth of monkey hair that we've been expecting for some time now. His head is feeling fuzzier and his chin has a little soul patch. He is adorable.
Grandma Chick is leaving early tomorrow (Sunday) and who would've thought that a nine-day trip would have included an intubation and an extubation? Oh well, at least it was eventful. Thank you Grandma Chick for all your help and welcome Grandpa Chick. Your separate trips have the nurses talking, but we know all is well.
Max's first full day off the vent (again) was fairly stressful. Of course. But multi-medical-degreed Dr. Sweeney came by and came up with an unusual plan - irrigation and suction. He feels that if the problems in Max's lungs are not asthma or upper airway, the next best guess is to call it a "secretion problem." His best guess is that when on the vent, there is better access to sucking out Max's secretions. But when off, with less access they get worse. So he wants Max "less dry" because it only makes his lung secretions thicker and tougher to cough up. This is difficult because they are giving him diuretics now to keep his fluid retention down from steroids. So he changed his breathing treatments and he did turn down Max' s narcotic. As he explained, even over-the-counter cough suppressants are narcotics. Even though he's surely uncomfortable and cramping, he's tolerating less pain medication well because it's being balanced with lots of . . . bottles! That's right, the best prescription ever! Max has been cleared to drink and drink often (water or pedialyte), to make up for loss of water from breathing and from not being on the vent. So far he is sucking down bottles and it's going a long way to making him more comfortable.
Late tonight, they brought in a new crib. It is a super-spiffy, and we've heard super-expensive, bed that has percussions (it actually bounces), and can rock back and forth and side to side (he's velcroed into some padded restraints). The idea here is to keep Max moving, vibrating, etc. They want things loosening up and hopefully the bed can help. But it is LOUD. Imagine an outboard motor or pneumatic drill going off under your mattress, and that's what it's like for Max.
The doctors are trying so hard to figure this out, and this new plan is welcomed by us because at least it is something new, and the treatments are very benign. When the doctors here feel confusion and frustration, it's so difficult. We feel we are here because this place has the most experience with Hurler Syndrome and transplant, but even so we've learned that all of these kids have individual issues, some startlingly unique. Sometimes it feels like we are beating our head against a wall that has only new walls being built behind it. But we remember that everyone has Max's best interest at heart and that if there was an easy solution, it would have been tried. It definitely keeps us going to see them thinking, and trying, and not giving up.
Thanks again for all your support,
--mike
posted by Mike Ciacciarelli
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