o2 trouble

Well, I called to order some more oxygen tanks for Quinn on Wednesday and much to my surprise, the company tells me that they cannot deliver tanks to her anymore because insurance has denied her oxygen. They claim that she does not have a supporting diagnosis and that we have to have some sort of "proof" that she needs it. The o2 company told me that I have to take her to the hospital to have a daytime pulse ox study. I called her pulmonologist and they told me that they still have to provide her with o2 until she gets the studies done. I called the company that is suppose to come out and do the nighttime pulse ox reading and they said that they wouldn't be able to come out for another month at least. (which is what they told me last month)... I'm so incredibly frustrated because it's quite evident that the oxygen has been helping her... ALOT! Recently, she was placed back on her o2 24/7 (recommendation of her pulmonologist) to see if it improves her seizures, balance, coordination, exhaustion and etc. Even though it appeared that her saturations were very stable, this was just to see how things go and if she improved, she needed o2. Well, we noticed a marked improvement overall when we did this for her.

We had a PT eval... I don't know... last week or something and the PT asked to take her off her o2. So she got out the pulse ox so we know if we were over-working her. She was fine, saturating at about 95-97% on room air, so we started activity for about a minute or two and then checked her and she would desat all the way into the low 80s, sit there for a minute and then come back up to the low 90s. She did this 5 times! Every time we started activity while off o2, she dipped. So, to me, that was a clear indication that she probably does need the o2, particularly while active, and this may be the reason why everytime we are in the docs office and she is in her stroller, she has pretty regular sats.

So anyway, because I couldn't get any tanks ordered, I had to take her to school yesterday without the oxygen. I LOVE her preschool teachers! They are SO awesome with her, so in tune to her health and daily well-being. they have seen how the oxygen helps her and were floored when i told them that she was denied coverage. Every day, they take readings of her oxygen saturations (twice a day usually) and record them on a chart indicating the date, time, saturation reading and if they had to turn her oxygen up to bring up her number. She HAS had days where she is in the 80s while in school. So, yesterday, since she was off o2, they decided to take her oxygen readings four times within the two hours that she is there. The first reading at 850 read 91%, the second at 1000 read 89%, the third reading at 1030 read 90% and the fourth reading at 1100 read 95%. These numbers are consistently lower than her average reading of about 95% while on o2. They also commented that she was a bit more tired and her eyes were droopier. Obviously, Q should be on her oxygen all the time. They document everything, which is such a blessing!!! So now the big questions that the teachers were asking me is, at what point do they call me or 911 if she is having low oxygen readings because she is SUPPOSE to be above 92%. I had a hard time answering that. I told them that if she is acting very exhausted, turning blue, or just totally out of her norm behavior, to call me and I will come and get her.

So yesterday i brought her home and checked her o2 reading and it was as low as 80%. I had been checking her all throughout the afternoon. She did have moments when she was above 92%, however, she was low most of the time. One time I even caught her looking very pale and I check her and her HR was 213 with an 86% saturation. I checked myself immediately after and it seemed accurate. checked her pulse and could barely feel the pulse her heart was pounding! She does do this sometimes... and a lot of hte times, it's accompanied with chest pains. She seemed to stabalize a couple minutes later. I decided that, although we have no tanks, we do have the concentrator at least until the o2 company decides to come and take that. So we are just keeping her on the concentrator. She perked up pretty immediately after I put it on and her color returned <--- i didn't realize how pale she was until she wasn't pale anymore.

Here's the crappy part... Quinn's pulse ox study is a nighttime study, so I was checking her sats while she was sleeping and at nap, she was 99% on room air... of course she was... and then I checked her last night on room air and she was 93%, but I never saw her dip lower than that. I saw it climb to 95% a few times, but typically it was 93% (remember, this was jsut me spot checking her because we still don't have a continuous pulse ox) So, i'm fighting the oxygen company to please provide her o2 until she has her pulse ox study done. If that is normal, i'm going to fight them to have a walking pulse ox study done where they hook her up while she's walking for 5 minutes. and i'm going to get the records from her PT session for proof that this request is not unreasonable.

I just think all this is ridiculous... as someone mentioned... because she can't desat on command. <--- haha!

Other than that, Quinn seems to be doing well. If we can't get tanks for her, she won't be going to school. I don't want them to have to deal with seizures and i don't want her to start seizing on me. We still don't have a date set for her J-tube surgery, but hopefully soon.

How she looked yesterday before we put her back on o2

These are from the pumpkin patch last week