Mommy Dragon

Mommy Dragon- That's me. I swear I have learned to shoot flames from my nose and mouth just like a dragon. Do you think there are pink dragons? Because that's what color I'd be.

We are back in the hospital again. Callista has ANOTHER urinary tract infection. Wednesday she developed a fever of 101 and Casey had to take her to the ER. It is the same bacteria from two UTI's ago. It bothers me that urology was not convinced we needed to change her prophylactic antibiotic, but to me this screams that we're not treating what we need to be treating. She was supposed to have a scan to check her kidneys on Friday but it didn't happen so now that is Monday.

Also while we are here, for some reason unbeknownst to me, her breath holding spells, which have never been an issue for the past six months, have now become a HUGE issue. Usually we can get someone to listen to us during hospital stays but this stay has been by far the worst. I believe they've already got an idea in their head and they refuse to let it go. And so begins the drama.... For the first time in Callista's life, a tracheostomy has been mentioned. More than once. With NO diagnosis that supports even getting one. This has been our worst fear out of everything. We got through the shunt, the decompression, the feeding tube, but a trach is where I draw the line.

Now don't get me wrong, if she was lacking oxygen all day, every day, it would be the thing to save her life. If she randomly stopped breathing and didn't give any warning signs, it would be the thing to save her life. But these breath holding spells happen only occasionally. It's when she is very pissed off and/or in pain. At home, we have them maybe once or twice a week. In the hospital she has them much more because she is: uncomfortable, unable to rest sufficiently, constantly being poked and prodded, and often without someone familiar to comfort her. Worse yet, she usually does not go into a breath holding spell if you pick her up and cuddle her. I've yet to see anyone here pick her up, let alone give her some lovin'. The concern for these just started a few days ago when the ENT came to scope and make sure everything in the back of her throat was still okay. They had a tube shoved down her nose and were moving it around. She got angry and cried. They continued. She held her breath and desated. And so begins the drama of the breath holding.

She now has to do a sleep study to check for central apnea (uh, she never does it in her sleep?). It was supposed to happen last night but did not. Now it's supposed to happen tonight but I won't hold my breath-no pun intended. The worst part of all this is that the doctors only want to jump immediately to talking trachs when we don't even have a diagnosis of anything! They've mentioned tracheomalacia, but that does not make complete sense either because she's had many scopes and a bronchoscopy and none of them showed any abnormalities. Also with thracheomalacia, many infants have random blue spells where they're calm and relaxed and still turn blue. Callie does not do this. You always know when it's coming. It is oreceded by banshee screams and is no surprise to anyone.

This morning started off on the wrong foot as well because an ENT that I am not familiar with came in and reiterated why we were doing the sleep study. I asked him politely what options were available if she does show apnea (her apnea monitor has not alarmed once since getting it two days ago). Immediately he says "trach trach trach trach trach". Or, that's all I heard anyway. I asked him why they would jump to such a drastic measure first and this is what angered me the most...."It will be easier to manage her airway if she ever has one of these spells and doesn't come out of it". Excuse me?! I may or may not have (ok, I did.....) raised my voice that I was not going to do something drastic and dangerous (respiratory infections are HUGELY possible with a trach) and life altering to my daughter for a "what-if".I wish I'd said this as well; If that were the case, every kid would have a trach because what if they stop breathing? And every kid needs to have a full body x-ray, full MRI, and blood work weekly because WHAT IF.... Get my point? After my little outburst he had the nerve to follow up with "It's just easier". Well buddy, we didn't ask for easy or convenient for YOU. We have to do what's best for HER. On top of all this, I really don't think her sleep study will show anything. But additional thoughts and prayers are always welcome and needed.

I'm going to try to keep my dragon reined in today, but with canceled/rescheduled tests and ignorant people, it's a hard task to manage. I really hate this place, it brings out the worst in me. I think you can guess which animal I relate to.