The weather here has definitely become the nasty hot that we as Arizonans endure so that we can have beautiful weather throughout the rest of the year. (At least that is how I see it!) We have had some amazing Thunder storms the last few nights and the rain has been wonderful. However, the change in weather wreaks havoc on my poor little one's bodies. First of all the thunder and lightning terrifies Bryce so he and I have spent some quality time together through the night cuddling, counting, and singing to get through the storms. The change in the weather also seems to affect their spasticity and causes their muscles to become tighter and more painful. We do lots of stretching, massage, and of course pain medicine during these times.
The scariest symptom of weather change for Bryce is croup. The wind, the dust, and the rain seem to bring it on every time. Last night we ended up heading to the ER with him. Just as I was heading to bed, he woke with croup and after doing all the "normal" things we do to help, he was still having a lot of trouble breathing and was still a bit blue. We had our neighbor come over and John, Bryce, and I loaded up and started heading to the hospital. As we drove, Bryce's breathing became a little lighter and he was able to relax some. His color came back and by the time we got there, he was not struggling as much. After seeing all the other people in the ER, we decided to just sit out in the humidity a little longer and see if Bryce would continue to breathe better on his own. Luckily he did and we decided that it would be better to take him back home and continue with our own breathing therapies rather then take him in and expose him to something else in the waiting room. We prayed some more, hoped it was the right decision, and headed home.
He and I spend the rest of the night sleeping upright on the couch. Luckily he made it through without too many more issues and he seems to be even better this morning. He is still pretty croupy, but at least he is breathing better. He was scheduled to get new AFO's this morning since he has outgrown his others, but I changed that appointment and hope to just spend the day here and maybe get a little nap in this afternoon!
7 comments:
This weather has been crazy, hasn't it? I hope you all get a nap in today, and that Bryce has a better night.
Tammy, Does Bryce do breathing treatments or take anything for allergies? I took Tabitha to an allergist and we found out she does have some allergies so he put her on Allegra for it but it didn't seem to change anything. I thought I might go back and ask to try a different allergy med but the first & last time I was there it was such a LONG wait that I just don't want to repeat the experience to have it not work. I totally understand about NOT gong into the E.R. it is such a nightmare going there. It really annoys me that the hospital is advertising all the time for people to come there but yet they don't have the staff or the rooms or something for anyone to be seen in a timely manner! I must say though I am thankful I have somewhere to take my children because some people in 3rd world countries don't even have it as an option. Your such a great mom Tammy! Thanks for keeping us updated
So true! I am so thankful that we have somewhere to take them for some help. I'm just glad this happened while John was here and hopefully we won't repeat it next week while he is out of town. Bryce is not on any allergy meds right now, but we do breathing treatments and use a cough assist machine and suction.
When we got our cough assist machine they told us to start out at a low setting until he was used to it and then to go up to the higher settings. But they never said how high to go up. How high do you go on the cough assist?
We do 15 inhale and 30 exhale. Funny thing is that I was going to ask you about the same machine. We also got very little information when we got it. They just told us that the inhale is suppose to be 15 cmH2O's less than the exhale and then they set it at 15 and 30 and said that should work for him. He DOES NOT like the machine at all and it doesn't seem to do much for him, so I'm not sure if we have it set wrong or what. What do you run your machine at and does it work well for your children?
Actually I don't know what the settings are. They set it up and said start at this setting until he is "used" to it and then go up on them. I don't like the cough assist that much I think mostly because I don't really know how to use it. Normally I ask a lot of questions but every time I asked something the person that dropped of the machine wasn't that great at explaining it even though he was suppose to train me and I was just really happy when he finally left. I have watched a few tutorials on YouTube but I think it's one of those things I have to have someone show me in person. I Like the Vest machine the best. It wasn't prescribed for Gummy but I use it on him anyway I think it helps the most and he likes it.
Sounds to me that we must be getting our "training" from the same person! I feel the exact same way as you do about the cough assist and the training we have gotten. I would love to get one of the vest machines for Bryce. His therapists have all suggested that as well. I think it would help him so much more than the cough assist does. Now I just have to convince the pulmonologist and insurance co. that we need one I guess. I often just use my hand and do my own "pounding" on him and that seems to work as well as anything and he is much happier with that. Thanks for sharing your experiences with this, it is so nice to know that others struggle with these things too!
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