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the eric update - day 83: on reglan and risks, part two. reserve capacity gone?

the big news today was that thanks to the less restrictive visiting policy at the new nicu, eric got a special visit from his grandparents, which meant that eric met eric while eric watched! fun! he also got to see grandma snowdeal which was equally fun. the new nicu allows anyone to come and see eric as long as we're there, so it's nice to get a chance to show him off, although we would begin to suspect later in the day that all the new voices ( he had more visitors than just grandma and grandpa ) might be stressing him and contributing to his alarms. ( for family and friends who are reading this who might be or have been visitors, don't go thinking that we're saying we don't want visitors - it's just that we might need to be more sensitive to talking quietly around him. or perhaps not talking at all, if he's really stressing out. )

eric continued to reflux throughout the day he still hadn't been put on reglan when we arrived. so, we took time during the day to talk to yet another neonatologist about the risks associated with reglan. it's all the more frustrating that this is one of those areas where, if you ask 12 different people a question as simple as "how common are the side effects from reglan" and, you'll get 12 different answers ranging from "we haven't seen anything in 30 years of practicing" to "it's a drug, it has risks and we see about 5% of kids who have side effects." to "well, occasionally i'll see twiches, but i don't like to use it because it's not really effective."

but eventually, we had to do something to help him keep his food down; he lost a little weight over the night, presumably due to the fact that he's losing so much food out of his mouth and nose. so, in the evening, we started him on a drug that can cause blood problems, muscle spasms and tics in children and is the subject of lawsuits due to the fact that it's known to cause a neurological condition known as tardive dyskinesia. most of the people we have talked to said that they thought that there was no evidence that any of the known possible severe side effects were an issue if the drug was dosed correctly on a short course of treatment and if it was removed at the first signs of any adverse events. i guess we can only hope that they're right.

even though three days have passed since the surgery, he's still doing things that he never used to do and it's hard to tease apart the root causes. in addition to the new reflux problems, he's still having many more apneas ( forgetting to breath ) that he has in the past ( remember, he went quite some time without having any alarms at all ). yesterday he had over ten events, some of which he had a difficult time pulling out of without the use of pure oxygen blown near his nose and mouth. eric is also having problems coordinating his suck-swallow-breath sequence while taking the bottle. he seems to remember the suck and swallow parts, but forgets to breath, which is contributing to the alarms.

when his evening nurse came on shift, she came over and started talking to me and i saw her make a face as he started to alarm. she came back a few minutes later and he started to alarm again when she started to talk. a lightbulb went off and she said that she thought he was still overstimulated from the move and the surgery and all the new voices and sounds. micropreemies normally have very little "reserve capacity" to keep up with the rigors of breathing and feeding and stressors can often wipe out what little reserves they already have. sometimes, soon after he was born, just using two of his senses ( e.g. looking at you while listening to you talk ) would wipe out his reserves and he'd start alarming. we hadn't thought about the issue in awhile because as he got older it seemed to be less nd less of an issue.

so we made an extra efforts to "stim" him less in evening by moving him less, turning the lights down lower than normal and talking in even more hushed whispers than typical. thankfully, the efforts seemed to work and his number of alarms seemed to diminish. in retrospect, it's fairly obvious that his reserve capacity has been completely depleted due all the new alarm bells and nurses voices and babies crying, in addition to the lingering effects from the surgery. thanks to an observant nurse, we now have a working theory that can give us something constructive to do - do things to keep his stimulation levels to a minimum - rather than sitting around, getting anxious and overstimulated ourselves, wondering if an impending infection is the cause of all his alarms.

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9/25/2004 11:52:00 PM 7 comments

7 Comments:

I find myself wishing there were some way to move Odin back to his original NICU. I know you've written that they are rarely transported back to a prior NICU, but it seemed like such a better fit for him (smaller size, less stimulating, focus on nurturing, staff who knew him and had instincts about his needs). He seems to have just struggled so since the move, and while I can only imagine how traumatic the laser surgery was for him and that its effects are playing out on a range of levels, it also just seems like a lot of this is environmental. All of you remain in my thoughts and prayers.

By Anonymous Anonymous, at 2:11 PM  

Re: Eric's "set-backs" at his new hospital, our daughter experienced something similar when she was moved from her level 3/4 NICU after 3 months to her level 2 in preparation for going home. For the first week after moving, she required more O2, had more desats and odd stools. One night it got so bad they did x-rays and blood work, but nothing showed up. Incidentally, the new nursery was significantly louder and brighter than our previous one with way more people around. After about a week/10 days she settled down and went back to her normal self. Hopefully the combination move & surgery is all that's ailing Eric.

By Anonymous Anonymous, at 8:10 PM  

thanks for commenting on the similarity to your daughter's experience. in retrospect, it's a fairly obvious that new environment, with it's different sounding bells and alarms, brigther lights and noisier noises and new voices would contribute to "overstimming" him, but we missed the forrest for the trees because we've never been transferred before.

By Blogger e3, at 11:29 PM  

Eric,
i haven't commented for a while, but i am still here, reading every entry. Let me know when you can receive letters at the new NICU, i unfortunately procrastinated with the Budapest card too long and then i saw you might be moving from St Mary's so i didn't want to send it to an old address but now i can't send it to the new one. Ah, why am i such a procrastinator? Sorry!

Btw, i had eye surgery, the knifes and cutting kind, not laser, 8 years ago. You are all in my thoughts!

Love and sunshine,
Kati

By Blogger Kati, at 4:51 AM  

I'm also wondering if more apnea spells could be as simple as the alarm threshold on the machines being set lower at this NICU than it was at the previous one?

By Anonymous Anonymous, at 11:39 AM  

Good Point about the alarms, the expectations of O2 sats went up as Andy got older, causing more alarms. He went home on an o2 alarm as well, and it was set to 95%. The kid would sneeze and set off an alarm. You get older, and adults want more out of you!

By Blogger Robb, at 11:46 AM  

hi kati - i'll have a solution about where to send stuff very soon, thanks for asking. the old nicu is still accepting cards and will hold on to them until i get around to picking them up, but i don't know how long they'll remain nice about being by personal post office.

actually, the threshold on the oxygen saturation alarm is set lower than it was at the old nicu, it goes off when his blood oxygen saturation levels dip below 80% ( at the old nicu, the magic number was 85% ). his o2 alarm would occasionally go off and i don't even count that as a "real" alarm, if that's the only one that's dinging.

it's the full-blown apnea alarm that had us concerned, it's threshold is the same between the two nicus; it only goes off when he hasn't been breathing for 20 seconds or more ( of course, then the "o2 sats" alarm will start going off as well ). while it's possible that the the new nicu is catching more apneas because they're using more sensitive sensors, i don't think that's the case, because there's a characterisic pattern of changes to the heartrate and blood oxygen levels that we weren't seeing before. nice theory, but "bzzzzzzzt", try again :-)

By Blogger e3, at 12:02 PM  

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this site chronicles the continuing adventures of my son, odin, who was unexpectedly born on the fourth of july at 25 weeks gestation, weighing 1 pound 7 ounces.

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