The journey continues

One thing that has never been unknown¬†me is ear problems in my kids. Every single one of my children has had multiple ear infections, and 3 of them have had at least one set of tubes. Z has had 2 sets, and C, my poor C, has had 6 sets of tubes. Yes that is 6 sets of tubes. His problem isn’t chronic ear infections but thick ear glue (viscous fluid) that doesn’t move and a poorly shaped eustachian tube that doesn’t work. He is severely speech delayed and can’t hear. He has had his tonsils and adenoids removed to try to help with the ventilation to no avail.

We have seen various ENTs. He had a set of tubes placed when we lived in MS, and they lasted 2 months max. Even long lasting tubes don’t last for him. When I noticed his speech changing, and him reading lips and yelling, I knew we had started ear problems again so I made an appointment with a new ENT at Texas Children’s.

Here is a post I made on Facebook about his appointment:

“This is a hard update for us to digest. He is beyond tubes. Both of his ear drums (tympanic membranes) are collapsed so badly she couldn’t see the structures in his ears she needs to see. His ear drums are not strong enough to handle more tubes which is why tubes keep getting pushed out. Because of this, we have options of reconstructing his tympanic membranes, placing stints, or cutting into bone and rebuilding that way. All of the options are scary, but the best option (that she feels) is to take a piece of cartilage from the back of his ear, and to place it into his ear canal and use it as an ear drum. She will place an ear tube in there and then that will help equalize pressure and keep his ear drums healthy and allow them to strengthen. We can only do one ear at a time so we will start with the left ear. If we do both at the same time, he won’t be able to hear at all.¬†

Now the really scary part, not like the first part wasn’t scary. The right ear wasn’t able to be seen fully and has fluid in it from some where. Yesterday the pedi thought he might have a perforation but the Ent today isn’t 100% sure. She needs to get a full look at his ear to know for sure. If it looks like the left side, we will go ahead and do the canaloplasty on the right ear when the left heals. If not, it means he has a cholesteatoma which requires an entirely different surgery and treatment plan.

Every option is scary and has risks. Some of those risks include hearing loss, including not doing anything (which isn’t an option). He is not a candidate for chiropractic adjustment, I asked her. She’s not against it but says it won’t work for him. She is also going to talk to the Eoe clinic (allergist/gi) to see if there’s any thing on their end they can do to help this to not keep happening.

Please pray for K and I for strength and peace to know we are making the right decision; for him to not be afraid and anxious and to understand why we are doing this; and for his team of doctors to have steady hands and full knowledge of everything.”

Scary right? Not news anyone wants to hear. It gets worse, though. He had a hearing test and his hearing is significantly impaired. He is a candidate for hearing aids with officially having moderate hearing loss. Anything more than moderate is beyond the help of traditional hearing aids to restore hearing to close to normal. Talk about a blow to the gut. Here I am, trying to stay on top of everything with his ears and health. I’ve taken him to the doctors. I’ve done everything they suggest and yet here we are talking about significant hearing loss and hearing aids.

We are, obviously, reeling from all of this news, and not quite sure what to do in regards to surgery. ENT and audiologist say it’s still on and the best chance he has. Then I started doing more research about EOE and ear problems. Someone on a EOE board Facebook pointed out a condition called Eosinophilic Otis Media, which is basically Eosinophils in your ear. C fits every symptom to a T. The thick fluid that doesn’t drain, the sudden onset, the not responding to normal treatments. He has EOE, so it wouldn’t be a stretch to think he has Eosinophils in other places especially since the throat is connected to his ears. However, with this, the surgery we are doing for C isn’t always 100% successful and sometimes even complete hearing loss is reported.

I haven’t called his ENT, yet, with this newfound knowledge. To be honest, I’m not quite sure how to approach it without seeming like I’m trying to tell her how to do her job. Regardless of the cause, we have to get his ears strong enough so he can hear properly. It’s just scary, not knowing what outcome faces your child. It’s scary not knowing if this is going to fix his ears. It’s scary not knowing if the worst will happen, and he will lose his hearing completely. This is where we have to have faith. We have to lean on God and His strength and know that He will be there for us whatever the outcome. That’s so much easier said than done, though, and I wish I could be 100% positive knowing we are making the right decisions.

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It’s Been a bit…

In 2015 my husband was laid off from a very well paying job in the oil/gas industry. The layoff hit us like a ton of bricks and sent us reeling. A family member offered us a place to stay and was going to give us the house and land, no charge. The only stipulation was we had to move to a different state. We felt like God was opening a door for a change for us so we went. Long story short, after a year there we decided God was calling us back home. We had many pluses for staying where we were. My husband had a job. We had a house. We had friends, and we were in an excellent school system. However, we still felt like we needed to go home. We needed to be within an hour drive of Texas Children’s Hospital for C’s EOE. We needed to be around family to help when medical emergencies popped up, which they tend to do, but most importantly, we wanted to go home.

We took a leap of faith and packed everything into a U-haul in the pouring rain, moved 7 people back home and into a tiny 2 bedroom house with my mother in law. My husband had no job prospects lined up, but had some ideas of what he could do. We had a decent savings and by living with my MIL, saved money. Within 2 months, he had an amazing job opportunity, making much more than he was making before, we had a really nice rental house and a brand new vehicle. It’s funny how things fall into place when they’re supposed to.

Now it’s almost 2017, and I can look back with certainty and know moving back home was the right thing to do. We are still established patients with the EOE clinic at Texas Children’s and with his allergist. He is seeing a world class ENT to help with his ears. The kids are in a small town, great schools, and thriving. We are still having tons of medical problems and diagnosis and unknowns, but I feel more confident knowing we are seeing the doctors at Texas Children’s.

Merry Christmas and Happy New Year to everyone. I have more updates, but for now this will do.