Monday, September 10, 2012


KayTar has been on overnight oxygen for almost a month now and I think it is going really well. She started off being fairly bothered by the cannula, I had to cut the prongs down a little and use bandaids to secure to her face (tightly) so she would leave it on her face AND so it didn't wiggle and bother her. Then last week, she told me that she didn't think  I needed to tape it anymore and she has left it on perfectly since then! We switched out cannulas last night and I didn't need to cut the prongs down this time! From a compliance standpoint, she's doing great with it!

She wakes up easier in the morning (even school mornings!) and seems to be getting better quality sleep. Last year, she got her feed in her sleep, Josh dressed her while she slept, and he carried her downstairs and she slept some more on the couch. For the most part, she is awake by the time her feed finishes this year. This morning she was a little sleepier because she it is her first day back after a week out and she still isn't feeling 100%. Nighttime alarms (when healthy) have also been reduced since starting oxygen. She was originally prescribed 1/4 liter per minute for nighttime use, but a lot of times it is insufficient to keep her sats up. When she is healthy, she is using about 1/2 liter at night and satting about 99...but when she was sick, we got up to 1.5 liters and she was still satting 95-96 overnight. Obviously, when she is sick she needs more respiratory support than we knew prior to having a monitor here at home, but we are glad to be able to give her what she needs now! She has had some fairly low desats while sick, like down to low 80s/high 70s, and generally her sats are just lower overall, especially when sleeping. From a symptom management standpoint, she seems like she is doing great with it, too.

When the pulmonologist ordered the oxygen, she did so mainly for nighttime use, but also gave us the go ahead to use it as needed during the daytime. She said to keep her oxygen sats between 96-99 and be careful not to let her sit at 100% if on oxygen. Beyond that, it is kind of our call at this point. Prior to this recent illness, we hadn't used it during the day at all, but while she has been sick, we've used it on several occasions when we notice she is satting lower than she should be (usually under 95). At home, it is a really easy call to make. We have the oxygen available, she is just sitting around here, there is NO reason not to hook her up and give her a little boost. But she is back to school today and I'm SO uncertain as to what the right call is where her oxygen is concerned. I brought the pulse ox up to school and her tiny little M6 tank (which we need to get a pulse regulator for) just in case. I told the nurse that if she is at/below 92, go ahead and start her on 1/2 a liter. It is lower than we would let it sit at home, but at school there are more issues to consider, especially social issues. Oxygen is such an OBVIOUS sign that someone is sick and I don't really want her to have to draw that kind of attention unnecessarily. I know, I know, a g-button and feeding backpack don't exactly SCREAM normalcy, but it is subtler to me...or we're just both used to it and the necessity is undeniable. I also know that a wheelchair doesn't exactly announce HEALTHY CHILD COMING THROUGH either but again, KayTar clearly needs it when we are out and about AND she loves it. That makes it a non-issue for me. She isn't totally comfortable with the oxygen yet (though she is very accepting of it at home when it is needed and she has even asked for it at times) and when she first started using it, she said, "I'm glad I don't have to wear this at school, people will think I'm WEIRD." It is a harder call to make knowing that she feels self-conscious about it. In the end, her physical health is the most important factor, but it is easy enough for me to tell myself that she was managing before we started monitoring her and before we had oxygen to give her, maybe not managing well, but managing is it worth it to make her wear it at school? And how low is low enough for it to be worth it?? So many things to consider! But for today, we set the bar at 92. I also put a call into the pulmonologist to get her opinion on what the cutoff should be and I'm waiting on a call back. I feel MUCH better about putting her on the oxygen during the day if it is the DOCTOR'S call, not mine. Sometimes it is hard to willingly put more on her little plate when there is so much there already! Luckily today her sats were good when checked and it was a non-issue. She is doing a lot better and I don't really expect she will need that kind of support this week, but it will be good to have some more detailed information from the pulmonologist, so I'm hoping she gets back to me soon!


jo(e) said...

I know I've said this before, but I really admire how well you handle all this. You are an amazing Mom.

dlefler said...

I am so glad the oxygen is helping at night - I hope she doesn't need it for daytime use (just because it adds yet another piece of equipment to lug around), but it is great that it is helping her energy level! Here's to staying free of germs from the other kids for at least the next couple of months!