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ENT, Conf Call, Success Story, Sleep

posted Aug 23, 2012, 6:23 AM by Manny Wilke   [ updated Aug 23, 2012, 6:40 AM ]
I submitted pictures of Manny's right ear closed canal to Dr. Roberson and he wanted to set up a conference call to discuss it. Because of possible infection, I took Manny into see Dr. Yaish (our local ENT) the day prior in order to have an accurate description of his ears for Dr. Roberson. Dr. Yaish did confirm the start of a fungal infection in his left ear, but his right ear did look ok - just the canal was almost closed. A few days prior there was some infection in his right ear when I tried to open it up with an ear plug.
When I spoke with Dr. Roberson, he expressed concern over Manny's reoccurring ear infections and the closing of his canal in his right ear with this last surgery. The ear infections could end up causing permanent hearing loss - which means his hearing aid wouldn't work- and he would be not be able to hear. At all. That would be terrible, obviously. He said that he wants us to get a CT Scan soon so we can figure out if there is bony regrowth causing the canal to close, to look at the implant location, ear drum, stapes in the left ear, etc and then devise a plan. Right now, if he had to guess, he thinks we may need to close up the right ear canal even if just temporary - but temporary may be until the teenage years - and implant the new hearing aid with implanted snaps to his skull. While I understand the reasoning, I can hardly type these words. More surgery, ideally within the next few months, to undo what has been done and what we worked so hard for through 74 days of "vacation". It is a balancing act though, because Dr. Lewin won't want any surgery on his new ears any time soon.
Few kids have this type of deterioration, most kids's ears heal and then it stays in place in both hearing and structure. He thinks that Manny's craniofacial malformations and VATERL syndrome may be making things more challening and he doesn't want to keep redoing something that doesn't work and every surgery has its risks. So, now I am trying to schedule a CT Scan, straighten out an insurance mess from prior surgeries, still play nurse, and get the kids ready for school while trying to catch up on work.
Last night before bed we were playing in the backyard and Manny's birth-to-three teacher, Lori, stopped by on her bike. I was briefly explaining to her the situation (I can hardly verbalize it) and she said, well, I know you are disappointed but for us - Manny is one of our greatest success stories. Look at him (he was running around) - we had no idea how he would end up - would he walk, would he talk? And for a split second, I was totally confused because I am so consumed in this disappointment and how I have failed my child. I guess we all need some perspective now and then.
On a positive note, yesterday Manny was able to sleep in his own bed for the first time since we hit 2 weeks post surgery and I don't have to make sure he isn't scratching his ears at night. I made Abe sleep in his room too. Abe has been saying "I'm sick too" and wanting to sleep in my bed as well. So, we're starting to get some sleep around here but with the emotional toll - it is just never enough. I've also been contacted by four different families this week who are trying to navigate through the surgery planning process and who are feeling very overwhelmed. So the overwhelmed gets to helped the overwhelmed but it is a great feeling to try to help others. Finally, we had a great time at Marcus Hanel's (Brewer bullpen catcher) Koos fo Kids fundraiser event in Racine. Manny and Eli got their picture with Ryan Braun on stage! That was awesome. Oh...and I finally finished an "official" half marathon.