Thursday, November 12, 2015

Cora Update - Surgery #3 and the Reflux Battle Continues

The last two and a half months have been a bit of a whirl wind again, I almost had to break out my notebook and start writing down every little thing that I noticed with Cora. It started with her shirt being soaked from drooling due to cutting her two year molars, it irritated her skin and gave her a rash which then spread to her back. Then her nose started running and was always green and gunky. Then her eyes were watering really bad again in addition to her waking and screaming at night. She'd sleep fine during the day for a nap but night time was a different story and I mostly was unable to console her.

At first I thought what anybody would, she's sick and has a cold. No biggie. But after a month I started questioning that and further contemplated what could be wrong. After two months of this even the therapists were telling me that something was wrong and the school nurse said her ears didn't look that great and to get them checked out. I couldn't get in to see her regular pediatrician so I opted for another provider who said that Cora had eczema and seasonal allergies. I politely disagreed with both and went on my way.

I started thinking more about getting another round of allergy tests done in case that was the culprit but I can't get into Cora's allergist until January.

Then we had a follow up appointment with the Ophthalmologist who after walking in the room and seeing Cora asked if she'd been crying. Nope, she's always like that. Ok, so the tear duct probe surgery that was done in May was not as effective as we'd hoped. How about surgery on her eyes again, this time putting in a tube? So we have surgery scheduled for November 24th on her eyes. It's minimally invasive, takes about 15 minutes, and I'll probably be home by 8:30am with no recovery needed. I felt relieved, honestly, because I'd like this problem fixed and I know people mean well but I get so tired of all the questions: oh, why is she so sad? Has she been crying long? Poor thing, what's wrong? Oh I see she's got the crud that's going around? No. This is normal for Cora.

And then that night a wave of previous emotions just leaped into my lap unexpectedly. Because of the surgery but mostly because of this "cold" that's been bothering her for so long. We just went through this in the spring, although much more serious symptoms and circumstances, but still. Just when you think things are going well and you're out of hot water, you have to jump right back in with both feet. I felt so defeated. I felt so bad for Cora! And so I cried in bed and cried and cried. It had been a long time since I cried. I finally called Lance into the bedroom (was downstairs working) and needed someone to talk to. So we chatted and I cried a lot more. I didn't necessarily feel a big weight lifted but I did receive inspiration. You can call it a light bulb moment or revelation or a motherly instinct or a combination of all three, but I instantly knew what was wrong.

Cora was still suffering from reflux - and bad! The only option left for her is medication, she's already had the nissen fundoplication surgery and the only thing left to help her is reflux medication. The problem with that is that she's highly sensitive and allergic to reflux meds. Back in May when we had the tear duct probe and endoscopy done, we knew for absolutely certainty that reflux was pooling at the top of the fundo. And not just acid reflux sitting there but she's been aspirating it as well, both into the lungs and through pharyngonasal regurgitation. That definitely explains the runny, green nose and the constant watery eyes. Poor baby girl!!!

A low dose, mild reflux med was prescribed in May after seeing the reflux pooling, I never tried it on Cora because I knew she's be so intolerant to it. However, also knowing that this is the only option left for her I decided to give it a go. She's now been on the Famotidine for 10 days. The runny and green nose has cleared and she's not waking up screaming several times a night any more. On the down side, she's also been constipated (side effect) and has a new rash (intolerance). So we're stuck in a catch 22 where the medicine is helping but also causing ill effects.

I'm hoping I can get the rash to subside altogether. If that doesn't work then we swap meds and keep trying for one that will work for her. I'm crossing my fingers that this fixes the problem! (And if the eye tubes don't work then the last option is surgery again, drilling holes into the nasal bone).

IN GOOD NEWS........the last two weeks she has been jabbering A LOT more! I was hoping that once she got the walking down and it became second nature to her, that her speech would develop and pick up. She doesn't say anything that makes sense, it's just baby jabbering. But the fact that she's making audible noise is great news!!

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