We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
Tuesday, February 21, 2012
Another week, another ER trip
Emily earned herself a trip to the ER yesterday, after a long 4 days of trying to avoid it. On Friday, she had a bronchospasm that lasted three hours. It was horrible, but she was managing to maintain her oxygen saturations, so I waited it out. It did worry me and I packed a bag for the hospital, but then of course the spasms stopped. It was definitely the scariest breathing episode she's ever had. The GOOD thing is that it proved that the trach was the best thing we did for her. She was able to breath and get nebulizer treatments and suctioning without a fight. What a relief the trach is!
Saturday she had another bronchospasm that lasted an hour. During the spasm I gave her a dose of Ativan, thinking it might calm her down. Thirty minutes later she was still spasming so we gave her breathing treatments even though they weren't due for an hour. Then she got some other medications that she was due for, and finally it calmed down. This time when she was spasming, she was not maintaining her saturations. Again, thank heavens for the trach! I was able to hook her up to oxygen and manage her at home. I did page the pulmonologist when this episode finally ended though, because I needed help with managing these.
She called in a prescription for Atrovent nebulizer treatments, and told me to try that along with the Ativan in the j-tube next time it happened. So of course, Sunday, it didn't happen at all. We thought that whatever it was, was over.
Until Monday morning, when she woke up doing it at 8 AM. Her morning nurse banged on my door to wake me up (Don't judge! LOL Jacob had the day off from school so we were sleeping in). She said "She's not breathing good! Come see please". Ugh, nothing like that to get a Mama out of bed quickly. I went in, and she was spasming again. We gave Atrovent via the nebulizer, Ativan via the j-tube, and waited a little. It stopped after about 20 minutes. We thought we were good, and then it started again. It went on, off, on, off. I paged the pulmonologist again and said we needed to be seen. She told us to come to the ER.
We went in and did a chest xray, trach sputum culture, and some swabs. Her xray was normal and her swabs for RSV and Influenza A & B were negative. They tested her CO2 end tidal volume, and it was good. The decision was that we could go home, and raise her oxygen a bit while we wait for a sleep study. We know she has sleep apnea, and it's most likely central apnea. The pulmonologist feels that she will end up on a vent when she's sleeping, and wants to do part of the sleep study with her awake. Seems like an oxymoron to me. ;) She wants to get a better idea of what the spasms are.
So, here's to another week of another journey. Hopefully it was the last issue we will have for a while! We have been home from the hospital for 3.5 weeks, which is a pretty good run for us lately!
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5 comments:
Oh goodness, you guys have been busy - and not in the most fun ways... Thanks for stopping by, and for offering condolences. Thinking of your family, too, and hoping that life calms down a bit. Signs of spring are keeping us going when going feels hard. Hope there are things that work that way for you, that help you see promise ahead even while you simply soak in today.
Oh, my. It's like you can't catch a break. We'll keep praying.
Adding my prayers!
Isaac had those spasms when he was an infant. Scared the life out of us! You have all been through so much lately!
Oh no :(
Nikki
www.madebynikki.blogspot.com - blog design to support special needs orphans in India!
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