So much for our winning streak.
Charlotte's sleep study results were less than stellar. She continued to have pretty severe obstructive sleep apnea, accompanied by desaturations of her oxygen levels while on CPAP pressure of 5. When they tried to increase the pressure, she had less Obstructive apneas, but more central apneas. They tried switching her to BiPAP and she went to straight central sleep apneas.
Awe.some.
So we're kinda taking the, "We're stuck with this, let's make the most of it" course of action right now. This sleep study has at least told us that, no, we're not crazy, her sleep apnea has in fact gotten worse over the past few months. (We kinda thought we were staring to make things up). Currently we are increasing the amount of oxygen going into her CPAP, and maintaining a CPAP pressure of 5. Her pulmonologist figures that if we can keep her oxygen levels constant, regardless of apneas, then at least she isn't sustaining brain damage while sleeping. (She was consistently maintaining sat's into the 70's, which is not the worst she's ever done, but it's not recommended.) However, her cardiologist might not like the extra work load that is put on the heart when you fail to, you know, umm, breathe. So we'll increase the oxygen until her appointment on June 6th, where the pulmonologist warned us the T word might be used.
Tracheostomy.
To be sure, we are a long way off from this procedure. However, Charlotte's heart is not exactly stellar, and her sleep apnea is only pushing it closer and closer to a rather ugly cliff. Pulmonary would like to see her tonsils and adenoids removed first, and we agree. (Even though ENT has said that a T&A will not do anything, as her tonsils and adenoids are not enlarged. Whatever.) If a trach is placed, it will only be done after we've removed all other possibilities. Cardiology, I'm certain, will recommend just watching her heart and making sure that there are not substantial changes to its structure, and/or function as her sleep apnea continues. Should one of those variables change, we'll try medications to combat the stress placed on the heart by the sleep apnea.
Sigh.
It's just like her pulmonary doctor said, "Charlotte, well, Charlotte... She's just one complicated little girl."
That she is. That she is.
Oh Amanda, i'm sorry to hear about the set back. It sounds like those tonsils need to go and hopefully that will be the end of the story. We love you guys and are going to miss seeing you so often. Love, Mandy
ReplyDeleteI am so sorry Amanda. Poor little Charlotte. I hope that removing those tonsils will help. She is one tough little cookie. A true fighter! She'll knock out anyone in the ring!
ReplyDeleteIt must be so hard to hear the news about Charlotte though. My heart goes out to you and I can't wait to meet you guys and hug you in person.
One more thing...I'm grabbing your button for my blog :)
ReplyDeleteWow. Rough appointment. The one thing I know about Miss Charlotte is not to count her out when the going gets tough. She is one little fighter and one big survivor! Lots of prayers for you guys. I miss you all already!
ReplyDeleteAnd so continues the roller coaster ride, I'm sure. I have to read your posts twice sometimes.ok,most times. That doc was so right, this is complicated. Luckily she has a genius for a mom and a doctor for a dad. Seriously ya'll are awesome parents! I really admire both of you.
ReplyDelete-Kay