Madison had a follow-up swallow study today. Her previous one showed she was aspirating a little bit when she was drinking really fast & she wasn't chewing well which was why she was getting choked a lot. Her swallow study today went GREAT! They didn't see any issues! Yay!
Then we had an appointment with her pulmonologist. She hasn't had to use her oxygen while sleeping since November, but we have kept her on an oxygen monitor at night while she sleeps. He listened to her lungs today & said she sounded great! We thought that today they would take her oxygen / oxygen monitor away. However, we will have it for another 6 months until we go back to see him.
From the pulmonology standpoint, they feel comfortable with her not having to be monitored at night. Medically she has improved so much from that standpoint (which is a relief to hear)! So right now the issue is Jake & I being comfortable enough to not have her be monitored. Hopefully we will get there before her next appointment in October. I tried to tell myself that I would be ok if they took the monitor away today, but looking back I don't think I'm ready. I'm more worried from a seizure standpoint then her having an apnea episode. All of her previous seizures happened while sleeping, and we only knew about most of them because the oxygen alarm went off where she stopped breathing.
I haven't been monitoring her when she takes a nap during the day since I'm awake & can check on her. However, everytime I walk in her room to check on her I have to stand over the crib to make sure she's breathing. I'm holding my breath until I know for sure she's ok. It's a horrible thing everytime you go check on your child to get flashbacks to the other times you've walked in to find her blue & not breathing.
I don't know if I'll ever be truly ready to have her not monitored while sleeping, but I know that God is bigger then my fears. And I am SO thankful in the progress that she has made over the last 15 months!
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