On Wednesday Ryan had ear tubes replaced, her adenoids removed, an endoscopy and an ABR hearing test. How did it go? Well, great, ehhh, and great.
The ear tubes were more maintenance than anything. She had ear tubes placed in May 2013, and one fell out a while ago, so she needed it replaced, so they just went ahead and did both ears. The adenoids were removed because of her history with ear and sinus infections. She is doing well, however her recovery isn’t going as easily as we would have liked. She seemed to have bounced back day one, then that afternoon and the day after she was super crabby, super sore, and kept grabbing at her throat. She isn’t the best drinker, she can do a sippy cup, but she just doesn’t really like to drink anything. Juice, water, chocolate milk, it doesn’t matter. So I kept filling a 10ML syringe with cold water and she was basically sucking it down.
This is definitely where her low level of communication becomes a huge issue. She keeps fussing, but we don’t know why, she rarely cries and suddenly she is crying with tears streaming down her face, I snuggle her, I put on a cartoon, I give her a little Motrin, offer up a favorite snack and nothing seems to work. Luckily I recalled that the Doctor said cool water is commonly requested by patients for adenoid removals, and the cool water syringe hit the spot. For awhile at least.
The ABR hearing test came back as “normal”. Normal is of course a bad word in the special needs community, but I’ll be brazen and use it here.
The endoscopy showed pooling in her esophagus and her Nissen (fundoplication) has slipped. http://en.wikipedia.org/wiki/Nissen_fundoplication, if we fix the Nissen it may help reflux but it may increase the pooling. If the pooling increases too much, then she could hold things in her throat for too long and perhaps she would aspirate. If we loosen the Nissen then the pooling could decrease but her acid reflux could come back ten fold, and too much acid in your throat makes you miserable and can potentially lead to cancer. So WTF is how I feel. WTF, yep it’s blunt and I’m sorry, but my baby has been through so much, we have been through so much and I’m tired. I love this girl so much, and I am tired of her having to be such a warrior all of the time. I am tired of being a warrior all of the time. I am ready for something to just work, and work forever. She also has a hiatal hernia http://en.wikipedia.org/wiki/Hiatus_hernia, so that is awesome.
So the Surgeon suggested that she will likely need to have another stomach surgery. If they end up doing surgery this way, then maybe it will work. If they do the surgery another way, then maybe it will work and maybe neither will work, and we may have to give up the dream of her continue to eat and drink orally. Our current Surgeon said that we should watch and see for now, she is spitting up less now, she is eating better now, and maybe she has outgrown her reflux and maybe her cognitive abilities will increase and she will understand how to make herself swallow when food or liquids begin to pool in her throat and well maybe, maybe, maybe. In the meantime we are getting everything ready to get a second opinion.
I am too sick for school, but not sick enough for another bubble bath??