Well the results of the sleep study were what I anticipated, with a twist. The RT that called with her results said the test showed that she has central sleep apnea (nothing new) and that 0.5 L of oxygen helps to keep her saturation's up (nothing new). Good nothings changed, glad we had another sleep study to tell us the same thing that we already know. But then she continues to talk about the test. "Wait there is more? Now this is new". She goes on to tell me that she has obstructive apnea again (remember we had her tonsils and adenoids taken out in April of 2014 to correct this problem and after that the test showed it was successful and the obstructive apnea was gone). She didn't have too many episodes, just about 10 or so. But her central apnea has gotten way worse. She already has been labeled with severe central apnea, what's worse then severe? Sadies test back in March showed that she stopped breathing about 190 times or so in a 9 hour period with no obstructive apnea. This test showed that she stopped breathing 290 times or so in a 6 hour period with 10 obstructive apnea's on top of that. I think to myself "well that really sucks", she continues to talk about the test and tells me about different numbers. All this is over my head. I'm an RN not an RT. But I listen and try to comprehend what she is saying and she is doing a great job of explaining things to me. Then she gets to a percentage of something that used to be 20% and now its at 55%. and she says "and that really isn't good". I start thinking "what does all this mean"? Then the RT says "the good news is, is that with all the apnea spells that she has, she is not retaining any carbon dioxide, that number actually improved". Yay! Something is good from this report. Gotta focus on the good news, right? We continue to talk for a little bit, and God bless this woman's soul, cause I start to cry on the phone with her (she probably was thinking that I'm a lunatic, lol). But when you hear that your daughters respiratory system is getting worse, especially when you are not anticipating those results, it really tugs at those heart strings... A LOT. We talked a little longer about stuff and that really and truly there is not much that can be done for central apnea. We hang up the phone and I just sit and cry.
When Sadie was born and we were learning about PCH, PTCD, CdLS, and everything else she has going on, it was more then obvious that respiratory seems to be these kiddos downfall (and gut issues, but that's a different story). I was told that a lot of them fall asleep and pass away in their sleep. Some are already ill with some sort of respiratory infection and some are not obviously sick. They just pass away for some reason. So my biggest fear in life when it comes to Sadie is that one morning she is just not going to wake up. It's a very morbid thought, but that's my reality.
So I sit and cry for a while and then pull myself together quickly, as my other girls are going to be coming home from school soon. Then my phone rings again and it's the same RT that I had spoken to earlier. She said that after we hung up she couldn't get me off her mind and went and spoke to the Dr about the results again. She said that there is a chance that a bi pap machine may help Sadie a little bit with her breathing problems and wanted to schedule another study so that we could trial the bi pap. You would have thought that I would have jumped on that, but I didn't. Bi pap can bring on a hold new set of issues. I had too many questions that she couldn't answer. I made an appt with the Dr to actually talk to her about everything going on and about options, or should I say the bi pap machine. She also suggested that I make an appt with Sadie's neurologist to see if her brain has any new changes. I did that too.
Now we sit and wait for these appt's.....
When Sadie was born and we were learning about PCH, PTCD, CdLS, and everything else she has going on, it was more then obvious that respiratory seems to be these kiddos downfall (and gut issues, but that's a different story). I was told that a lot of them fall asleep and pass away in their sleep. Some are already ill with some sort of respiratory infection and some are not obviously sick. They just pass away for some reason. So my biggest fear in life when it comes to Sadie is that one morning she is just not going to wake up. It's a very morbid thought, but that's my reality.
So I sit and cry for a while and then pull myself together quickly, as my other girls are going to be coming home from school soon. Then my phone rings again and it's the same RT that I had spoken to earlier. She said that after we hung up she couldn't get me off her mind and went and spoke to the Dr about the results again. She said that there is a chance that a bi pap machine may help Sadie a little bit with her breathing problems and wanted to schedule another study so that we could trial the bi pap. You would have thought that I would have jumped on that, but I didn't. Bi pap can bring on a hold new set of issues. I had too many questions that she couldn't answer. I made an appt with the Dr to actually talk to her about everything going on and about options, or should I say the bi pap machine. She also suggested that I make an appt with Sadie's neurologist to see if her brain has any new changes. I did that too.
Now we sit and wait for these appt's.....
