This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Monday, September 14, 2009

O2 Ups And Downs

Saturday night I took her off the O2 while she slept because her sats were still in the low 80s/high 70s, so I kept if off all night. Then yesterday (Sunday) morning, I kept it turned off and I spot checked her around 9am. It was 77-79ish, so I called the cardiologist and asked if I could just keep her off the O2, and the cardiologist said yes. (woo hoo!)

I was so happy, I thought Thank God, she only needed the O2 for 24-48 hours after being released (or for 4 days post cath). But, maybe...maybe not. Tonight, right before she went to bed I plugged her in and checked her again and she was 75-77, a little down, but still above 70, which is the benchmark for needing the O2. I unplugged her from the pulse-ox (so she doesn't choke herself on the cords while she sleeps), and went to bed myself.

Well, when I woke up to pump, I checked her again and it was 65! What the heck? Why did it go down by 10 points??! I don't know if it's a misreading on the pulse-ox, but even after a half hour it was still 70-71. I want to just put her back on the O2, but it is totally a struggle to fight with her to get the tube up her nose and taped to her cheeks. : ( Plus, I already removed the 'cheek stickers' that hold the nasal cannula in place and her cheeks are bright red from the irritation from the tape. I don't want to do that to her again, but obviously I don't want her to be having possibly dangerously low O2 levels? What to do...what to do? Should I wake her up and torture her with the struggle to get the O2 tube back on?....

I just checked her again (it's been about an hour already), and she was 74. Beth said that as long as it's above 70, she's fine, but I'm still a little worried. Tomorrow, if it is 70 or 69, I'm gonna turn the O2 back on. I really don't want to take any chances with her levels getting too low.

On a different topic, Scarlett's only living grandpa (Todd's dad) is in the ICU! :( He was diagnosed 5 years ago with the crippling disease ALS [Amyotrophic Lateral Sclerosis], also called Lou Gehrig's Disease. Todd's sister called him last night to tell him that their dad was rushed to the emergency room in critical condition. I hope that he makes it, but he's a very sick person (already in the last stages of ALS...wheelchair, ventilator, trache, can no longer move/speak on his own). I feel for Todd, he loves his dad very much. I hope Scarlett's grandpa makes it, but I also don't want him to suffer anymore. If you're reading this, please say a little prayer for him. Thanks.

3 comments:

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  2. So glad she is home! She is a doll! Sorry she has to have the canula, this age is hard because they try to take everything off. Alexa was in the ER on friday and they gave her an iv line and she kept picking the cotton out of it that was there to keep it in place. Looks like we both have oxygen saturation on our minds. Glad to know I'm not the only momma thinking of this.

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  3. I am so sorry Scarlett had to come home on O2. I remember how frustrated I was when a trip to the ER with Mark when he was 9 months old resulted in us coming home with oxygen. We did eventually get used to it, and we were VERY lucky that Mark never messed with the canula. I hope Scarlett will get used to it and leave it alone so you can rest easier!

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