Sunday, September 6, 2009

Really lame update

So Marley's health saga continues. Marley has always been a congested baby. She drools almost constantly and this whole summer I have had to keep a rag handy to wipe the ever-present stream of snot dripping from her nostrils. And with congestion comes snoring. Big, loud, keep your parents awake snoring.

About 3 weeks ago the snot production stepped up a notch and the snoring became deafening. And then came the apnea. Apnea simply means an absence of breathing. And that's what Marley does. At first in only lasted a few seconds, then the periods of apnea became longer. 5 seconds, 10 seconds- followed by a gasp and often a cough. Long enough for me to lie in my bed listening, counting and praying that she would just take a fucking breath!

I made an appointment with our pediatrician but could only get fit in with one of the residents, Dr. Radesky. Ah residents! Bless their hearts. So young, so eager to please. She was able to get Marley in for a sleep study within a week, when the next available appointment wasn't until January. She called me after hours and even gave me her cell phone number.

On September 30th, Marley and I arrived at the sleep center at 7pm for her sleep study. I was dreading this test, and rightly so. Poor baby was hooked up to so many wires, had a nasal cannula stuffed up her nose, and had her head wrapped in layers of gauze so she wouldn't pull off the electrodes stuck on her head. How could anyone sleep that way?

After 2 attempts to rock her to sleep I finally had to just let her cry it out. She kept rubbing the nasal cannula out of her nose so the sleep tech had to keep coming back to pop it back in which woke her up, made her cry and made for one long, very miserable night.

The next day, Dr. Kifle the sleep specialist called to tell me that Marley failed the study big time. She recommended that we start her on oxygen at night and get into see her ENT, Dr. Sie ASAP. After much prodding and pushing on my part and on the part of our pediatrician, Dr. McPhillips, we can't get in until September 14th. Fortunately, it seems that she will have surgery soon after to remove her tonsils, adenoids and have a broncoscope to evaluate her trachea.

Hopefully, we can also coordinate the MRI and hearing test as well so that she won't have to be sedated again 2 months from now. In the meantime, we've got blow-by oxygen directed at Marley's face while she sleeps, a cool-mist humidifier pumping out some pretty cold air, and a pulse oximeter strapped to her foot to monitor her O2 levels while she sleeps. For the most part, her O2 sats stay in the 90s though they do occasionally slip into the high 70s. A quick look at Marley's room may remind some of a hospital NICU but we are adjusting to all the equipment- even the 75lb O2 tank sitting in our bedroom.

I hate that she has to have another surgery. This will be the 3rd one in a year. Every time I think we are safe- that nothing else can pop up, the rug gets pulled from under me and I feel so defeated. I'm hoping that removing her tonsils and adenoids resolve her snoring and apnea but if it doesn't then what? I'm not ready to explore that possibility.