Joey needs to eat, and a few other changes.
I can't get over how smiley Joey is these days. I used to wonder if I would ever see him smile regularly, and every now and then I would get a glimpse. These days I can get a lot of smiles out of him. He still has his old man personality, but he is starting to show some personality. He is starting to become a lot of fun. We danced our heart out yesterday-my version of respiratory clearance for him combined with some physical therapy. He smiled throughout the whole thing dancing with his momma.
Some things we are working on-the slowest drug wean ever-it is going to be a month long process. The kid was on the sedation drugs a lot less time than it is going to take him to wean off of everything. We are currently on atavan, phenobarb, and methidone. They are doing a wean every other day, but they are very small incremental weans. I feel like the longer it's in his system, the more damage it is causing. It is a fine line though, because the drug withdrawals can be ugly. I think they are paranoid of the crashes that Joey is capable of, so they are going very slowly. It's hard for me though sometimes to watch him become stagnant, because I'm a mover and a shaker and I want to see improvement daily, especially when I know he is capable.
Respiratory wise, I had to ask them to wean his peep and respiratory rate, because they were not planning on weaning anything for a while. I'm paranoid that leaving him at a peep that he does not need will cause damage to his lungs. We started at a peep of 13, and we are now at 11. I think he could easily go down to 10, and definitely make it to cpap mode on his vent. I don't think the kid appreciates being irritated. Less is more with Joey-less drugs and less sedation meds. His oxygen has been hovering anywhere between 29-40ish. I'd say his average is being in the 30s FIO2 which I think is pretty reasonable. I have spent a lot of time learning the vent, although I know all my screens will most likely be taken away once we move to a home vent. Secretion clearance is also key with Joey and I am super paranoid about this since he has had issues with this.
They plan on doing another echo and BNP early next week, and if that looks okay with his pulmonary hypertension or there are no other changes, then we will continue the wean. I would just like for him to get to CPAP mode, because it would seem less irritating to him to have a vent not force breaths on him.
He is still having some difficulty with keeping his feeds down. We started probiotics, and have moved to just all progestimil to see if this would help the situation. He has rotated between pedialyte and formula all week and has lost weight because of this. We are just kind of sitting tight right now. My hopes are as we start weaning back on things, maybe his eating will improve.
I also got to put Joey over my shoulder so he could work on his head strength for the very first time yesterday and he and I both loved it. I have missed those moments. I also thought it was good time to do some percussion while I held him over my shoulder so he was able to get a lot of stuff moving and out. For example, he started to trend backward on his FIO2. He sounded clear, and there were no secretions. My next step was to pick him up and to pat him on his back. Once I started doing that, secretions started to move around and he got some stuff up. He immediately started saturating better. I'm glad that I discovered this trick last night.
Other than that, I am pleased with our progress and so thankful for the good times we have gotten to spend with Joey. He is truly a joy!
Baby Yoda got a trach too.
Some things we are working on-the slowest drug wean ever-it is going to be a month long process. The kid was on the sedation drugs a lot less time than it is going to take him to wean off of everything. We are currently on atavan, phenobarb, and methidone. They are doing a wean every other day, but they are very small incremental weans. I feel like the longer it's in his system, the more damage it is causing. It is a fine line though, because the drug withdrawals can be ugly. I think they are paranoid of the crashes that Joey is capable of, so they are going very slowly. It's hard for me though sometimes to watch him become stagnant, because I'm a mover and a shaker and I want to see improvement daily, especially when I know he is capable.
Respiratory wise, I had to ask them to wean his peep and respiratory rate, because they were not planning on weaning anything for a while. I'm paranoid that leaving him at a peep that he does not need will cause damage to his lungs. We started at a peep of 13, and we are now at 11. I think he could easily go down to 10, and definitely make it to cpap mode on his vent. I don't think the kid appreciates being irritated. Less is more with Joey-less drugs and less sedation meds. His oxygen has been hovering anywhere between 29-40ish. I'd say his average is being in the 30s FIO2 which I think is pretty reasonable. I have spent a lot of time learning the vent, although I know all my screens will most likely be taken away once we move to a home vent. Secretion clearance is also key with Joey and I am super paranoid about this since he has had issues with this.
They plan on doing another echo and BNP early next week, and if that looks okay with his pulmonary hypertension or there are no other changes, then we will continue the wean. I would just like for him to get to CPAP mode, because it would seem less irritating to him to have a vent not force breaths on him.
He is still having some difficulty with keeping his feeds down. We started probiotics, and have moved to just all progestimil to see if this would help the situation. He has rotated between pedialyte and formula all week and has lost weight because of this. We are just kind of sitting tight right now. My hopes are as we start weaning back on things, maybe his eating will improve.
I also got to put Joey over my shoulder so he could work on his head strength for the very first time yesterday and he and I both loved it. I have missed those moments. I also thought it was good time to do some percussion while I held him over my shoulder so he was able to get a lot of stuff moving and out. For example, he started to trend backward on his FIO2. He sounded clear, and there were no secretions. My next step was to pick him up and to pat him on his back. Once I started doing that, secretions started to move around and he got some stuff up. He immediately started saturating better. I'm glad that I discovered this trick last night.
Other than that, I am pleased with our progress and so thankful for the good times we have gotten to spend with Joey. He is truly a joy!
Baby Yoda got a trach too.
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