Gaining some strength and steam
Yesterday Joey was still a little bit fussy, but he was weaned into the 35-40 percent range with a flow of 5 yesterday, which is a great wean! This morning I walked in on him awake at 38 percent oxygen and he was easily saturating into 100. He was also in a good mood awake. I did notice some boogers and maybe some congestion, but it could be just due to the vapoflow. So far so good this morning. I will report back as the day continues.
He eventually was weaned to 36 percent during the day, and stayed there consistently. When he got angry and worked up, he was able to bring himself back up easily. This was a good spot for him. He had a couple of gaggy spit up-acid reflux moments.
I also called early morning on 2/20/20 at about 6:15AM and the nurse reported that he had a good night. He spit up a couple of times, had a couple of dirty diapers, and slept well. At one point she had weaned him down to 30 percent oxygen but had to put him at 33 percent again. This is big improvement, and he is handling his flow of 4 of well. Again though, the plan is to only wean every other day on flow, so today is rest day from the adjustment so that he can gain strength.
I met a mom in one of our groups who has a child who is on airvo at home and she travels with 2 liters of nasal cannula. I think Joey could benefit from having a couple of options of support at home, just to gain his reserve back. Maybe transitioning between a cpap/or vapotherm in the evening, while staying on nasal cannula during the day, and viewing the vapotherm/cpap as therapy. I know it's not usually done at Vanderbilt, but I think Joey is worth thinking outside of the box for. He really has written his own medical text book and I think with God, anything is possible.
He eventually was weaned to 36 percent during the day, and stayed there consistently. When he got angry and worked up, he was able to bring himself back up easily. This was a good spot for him. He had a couple of gaggy spit up-acid reflux moments.
I also called early morning on 2/20/20 at about 6:15AM and the nurse reported that he had a good night. He spit up a couple of times, had a couple of dirty diapers, and slept well. At one point she had weaned him down to 30 percent oxygen but had to put him at 33 percent again. This is big improvement, and he is handling his flow of 4 of well. Again though, the plan is to only wean every other day on flow, so today is rest day from the adjustment so that he can gain strength.
I met a mom in one of our groups who has a child who is on airvo at home and she travels with 2 liters of nasal cannula. I think Joey could benefit from having a couple of options of support at home, just to gain his reserve back. Maybe transitioning between a cpap/or vapotherm in the evening, while staying on nasal cannula during the day, and viewing the vapotherm/cpap as therapy. I know it's not usually done at Vanderbilt, but I think Joey is worth thinking outside of the box for. He really has written his own medical text book and I think with God, anything is possible.
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