Well we got our results of our "4" (It was only a 2) hour pulse ox test yesterday. It was a sad moment for us...... Gabby does sleep with me and since the Kepra was added I noticed Gabby's respiratory has decreased at nights. I called our pulmonologist and he felt we needed to have a 4 hours pulse ox test down immediately to be on the safe side. i sat there from 1 am to 3 am a wreck. Around 3, I decided it was in my best interest to turn it off. When I first placed it on, I took it back off due to her pulse ox at 80. I thought it was broke. After seeing the green light flashing I knew it was right. My heart sunk, I sat there for almost two hours watching it. 80,81,79,81,78,83.... It never rose above 84 at any point. I was unable to sleep. My fear had been confirmed. I cried for a bit, and then pulled it off. They had stated if it was under 88 for more than one minute she would need to be placed on oxygen at nights for her own safety.
I called the company the next morning to talk about what I had seen. I stated I had not left it on for the 4 hours due to the numbers being so low and my inability to sleep knowing it was that low. They said with numbers like that UPS would be there with in the next hour to pick it up and have it shipped to an independent company to be downloaded and read. With in 12 hours I got that phone call stating they would be at my house with the afternoon to drop off her new equipment.
I cant say enough good things about our home heath care company. They sent out a delivery man, who spent over an hour explaining everything to me. I have never had to deal with oxygen before. The equipment is large. After all the explaining on how to use it I felt we were good to go. Last night was our first night using it. I was unsure on how Gabby would react to the tube in her nose. She did better than I had expected. The tape was the worst part of everything. I need to look into some different types of tape, and stickers. Not sure what is all out there but I am sure there is some creative parent who has already found the perfect sticker. I hope with each passing night she does better, and like my smart aunt said " At least they caught the decrease. She will store O2 during the night and have more energy during the day. The O2 will help her little body heal."
The reason this is so hard for me to swallow is the fact I worry this is her starting to regress. I know its a sign of regression. We were stuck in a hard situation. We don't want the grand mal seizures to continue, they are more dangerous than the Kepra. So although there are side effects to the Kepra, it was a what was better for her situation. Knowing that Oxygen needs to be used at nights is not that big of a deal. I would rather not live though the seizures. Thank you all for your prayers for Gabby. They mean more than words can say.
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