The preliminaries, Henry gained 10 grams today and weighs 1930 grams. I believe we missed blogging on Tuesday when he weighed 1920. Joyce/Kathy/Holly were his nurses.
Yesterday and today has been an experiment. Kate is rooming in at the hospital to try to make sure that Henry is able to breast feed well enough so that he can start bottle feeding without worry that he will then reject the breast. The bottle is apparently much easier to nurse from. This causes some babies to only feed from the bottle, especially if introduced to the bottle first. Lazy little buggers.
The overall goal is to try to manage his reflux. Since breast feeding his number of reflux and brady episodes have dramatically increased. One thought is that the tube going down into his stomach is holding open the connection between the esophagus and the stomach which allows stomach contents back up into the throat, reflux. If he can be fed via the breast and bottle then he won't need the tube into his stomach anymore.
It is not certain that this will fix the problem but hopefully it will lessen it. At this point when he is fed via the tube that takes 30 minutes. Then he has to be held upright for about 90 minutes to prevent reflux which can lead to bradys. So then he has about 1 hour left in which he can lay down in the crib and get some rest. He does rest while being held but it is hard to say how well he is sleeping in any position right now. Not to mention that we feel like we are trapped in an endless cycle of feeding and holding.
So far the experiment is going ok. He is breast feeding well. Kate and I both feel he has the hang of it enough to try bottle feeding. So far we have not tried bottle feeding and I'm not sure when we will.
On the down side he is still having the bradys. He had one group of episodes this afternoon where we had to put the oxygen mask on 3 times in about 30 minutes because his oxygen saturation's got so low after a brady. Later we had been holding him for about 90 minutes and I put him down to change his diaper and he had a brady within about 5 seconds of being put on his back.
If this continues then he will likely be evaluated for possible medication to prevent the reflux. We've heard different stories of what is considered a large number of bradys and when reflux medication is prescribed. The new attending doctor even told Kate today that reflux is not related to bradys. That kind of blew our minds after every nurse and nurse practitioner has said they are and by observation it seems blatantly obvious. We would like to keep him off any medication if we can, that is why we are doing this experiment. However, it might be necessary to allow him to get decent rest. If he can't get a good nights sleep then it is harder for him to grow and growing is the cure for all that ails him at this point.
Another alternative is something called a Danny Sling. It is some contraption that allows them to tilt him at a greater angle in his bed without having him fall out. Next best thing to holding him upright but it looks rather uncomfortable.
On a lighter note, Kate and I had been concerned about the lack of response to his alarms going off. With the increased bradys we wanted to make sure that he wasn't left without oxygen for extended periods of time. So last night they setup a baby monitor for his room so the nurses in the pod could hear his alarms better. Well of course Kate and I are chatting away when we realize that anyone out in the pod can hear what we are saying. Recapping our conversation we realize that we had a few embarrassing quotes like this one:
Kate: "I'm tired of being naked all the time" (referring to breast feeding)
Jeff: "Kate Kenski, all naked all the time!" (in my best radio announcer voice)
There were a couple more but I'm too tired to remember them now. If Henry ever reads this I'm sure he will be horribly grossed out by his crude parents.
Adjusted Age
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Just wanted to elaborate on our Tuesday adventures. Linda was Henry's day nurse Tuesday, and Lydia was his night nurse.
Henry had his eye exam. Nothing has changed. Still has Stage 2 ROP in Zones II and III of his eyes. A few days ago, one of the nurses (I can't remember who) told me that they sometimes operate on kids at Stage 2. Talked with the eye doctor, and she said no. They discuss eye surgery if it progresses to Stage 3. Although it isn't great that he has Stage 2, at least it isn't at Stage 3, and he doesn't have any signs of "plus disease," which refers to the situation when the blood vessels run horizontal rather than outward from the eye.
Tuesday was incredibly frustrating. After the eye exam, Linda went to lunch. Henry's alarms go off, and no one came to help me. I had to flag down one of the custodial staff to go and get a nurse. Then, Karen came to help with the desat. I guess she was under the impression that parents no how to deal with things when the alarms go off. I knew what to do. He needed extra oxygen, but I was under the impression that parents weren't supposed to fiddle with things like oxygen doses and the equipment.
Then, later in the afternoon, Henry had a brady. And, no one came to help me, so I had to administer a blow-by myself. To say that I was not happy is an understatement. Linda (who came after I yelled) explained that it was reflux. Yes, I knew it was reflux. But when his heart rate dips because of reflux and his oxygen sats get low, it doesn't matter that one can identify the cause. The kid needed oxygen ASAP, and the nurses ignored the alarms.
Lydia in the evening was great. She responded to his alarms from across the room. And, she was just generally very nice.
I spoke to Moe Kane about my oxygen concerns and how no one came. Moe eased my concerns about how low his oxygen had dipped. There shouldn't be any permanent damage from the dips.
Yesterday morning, I asked Joyce how many bradys Henry had had. She looked in the computer. Linda never logged the brady that he had in the afternoon on her watch. I was not happy about this.
I reiterated my concerns about staff not responding to alarms to Melissa Perillo, the nurse manager. I asked her if I should be the one to administer oxygen when the staff fail to respond to alarms. She said no. I shouldn't have to be administering the oxygen. She was going to talk to the staff about the situation. I told her that I was also surprised that Linda didn't ask about Henry's stooling and voiding output. I had been changing the diapers, and she never asked me what was in them. These things are supposed to be logged into the computer.
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