Saturday, December 14, 2013

Hannah's Ears

So, this is the update on Hannah. Back in August, I found out her hearing, which has always fluctuated between borderline normal and mild loss, had deteriorated in both ears.  Scroll down to the "Hear Ye, Hear Ye" post for the technical explanation. But bottom line was she was showing a moderate-severe to mild loss in both ears. (Moderate-severe loss in lower frequencies rising to mild loss in upper frequencies).  Her ENT felt like a tube in the left ear might bring hearing in that ear back to normal. (The right ear still had a hole in it). So she had the tube placed mid-september. We went back at the end of October for a re-check of her hearing and it was sadly not any better. A couple frequencies did improve slightly, but a couple were slightly worse too.  Her ENT thinks all her previous ear infections / fluid issues have eroded parts of her middle ear bones. The only way to know for sure is exploratory surgery, but if that's the case, he wouldn't recomend surgical reconstruction at this time due to her continued eustachian tube dysfunction.  He felt like her best option would be hearing aids.

We followed up with Children's Rehab Services because we were already plugged into them for cleft-related things. They have a hearing clinic as well and I was able to get a quick appointment there.  After double checking her hearing one last time to make sure there were no changes, the audiologist went ahead and made molds of her ears and had Hannah pick out her hearing aid colors.  She chose purple for the actual aids and pink and purple swirl for the molds.  About 3 weeks later, they were in.  So, we went back to pick them up, check fitting, and another hearing test with the hearing aids. It was so cool to see her audiograms with the aids and compare them to without.  Her hearing levels tested completely normal in all frequencies with the aids.  And the technology is amazing. I was worried that some sound might be too loud amplified. Despite having a hearing loss, Hannah is sensitive to loud sounds. But the program in the aids themselves adjusts to the loudness. Something technical about compression and such. :) But basically, they are programed to only go to a certain loudness level in order to not damage more hearing. And they adjust automatically. If someone were to come up to Hannah and slam a door right behind her, the aids would automatically compensate and decrease output.  Hannah was so excited to get her hearing aids and loved them. And 2 weeks later, she still loves them. She puts them on every morning and takes them off every night. She has done great with caring for them and cleaning them as well.  And she changed the batteries on them tonight. She says she can tell a difference with them in. I can tell a difference.  I'm rephrasing a lot less often and she just seems a little more relaxed. So I'm glad we got them.  She'll go back in 2 months to have them rechecked and then will probably only go back every 6 months for a check and new molds unless concerns arise.  The aids themselves should last years but she'll need frequent molds due to growth.

I asked her if she thought they helped her at school. She said yes, she can tell a difference. She does still have a little trouble in noisy situations. But that's because while the aids will amplify her teacher's voice, they also amplify all the background noise.  But we are working on solutions to that. Her only complaint is that sometimes lunch and PE are too loud. I can see that - I've eaten enough lunches in school cafeterias to know how loud it can get.  Right now she doesn't have any control over the volume of her hearing aids, but that is possible with these aids. It just takes the audiologist "activating" the volume control button.  So, that's a possibility so she can turn down the volume in those noisy situations.   I just hope she doesn't turn me down when I'm telling her something she doesn't like! :)

NEXT POST: All About Christmas Fun! (Coming soon)

Sadie's Surgery - Goodbye Fixator!

Sadie's Surgery (#2 for this series, #6 total)

The day after Thanksgiving Sadie and I headed to Atlanta bright and early. REALLY early. We left my parents' house at 3:45 a.m.! While the fixator was on, Sadie had several infections and rounds of antibiotics. She had been off antibiotics for about a week. She had been fine - the pin sites looked great, etc. And the morning of surgery, she starts complaining in the car that her arm hurts. Sure enough, when we got there and took the gauze off, it looked like it might be getting infected again and had been draining.  Her surgeon looked at it before surgery. And then afterwards said it did look like it was in early stages of infection. He also said her pins were very loose in the bone.  Not terribly surprising as long as they had been stretching her wrist out for such a long time.. But it looks like the fixator came off just in time before causing problems.  She did have to take a round of antibiotics after the surgery though.  Sadie's surgery overall went great, but she was pretty sick at her stomach afterwards.  We were prepared for it this time though.  First, I had a letter from her nephrologist stating they should not limit her fluids (like they did last time). That helped because I didn't have to worry about her being dehydrated. Plus it helped her just not feel so bad. And second, her surgeon had made plans to tentatively keep her overnight. Basically, he admitted her immediately after surgery, but gave us the option of going home late afternoon if she was doing fine.  But even through the afternoon, she wasn't drinking and couldn't keep it down if she did. So we stayed. The fluids and pain medicine being given through IV helped and she also got 3 doses of iv antibiotics while we were there so I'm glad we stayed. By the next morning, she was back to herself: eating pancakes, joking with the nurses, wanting out of bed, and ready to go home. We were discharged late that morning and she did great from then on.  She was happy about two things: she got a purple and pink sparkly cast and her surgeon let her keep the fixator (minus the pins thankfully).  Her stuffed dog pouffy had a little surgery done once we got home.

Sadie kept the purple and pink cast for only 10 days. Then it was back to Atlanta for post-op xrays, cleaning of her surgery site, and a new cast. X-rays looked great! Her new cast is Christmas red and green and to Sadie's delight is a short-arm cast. (Her purple and pink one was long-arm so she's now thankful to be able to move her elbow.)  During the few minutes between casts, we got a good look at her arm.  It's pretty brusied and "yucky" looking still, but it's very straight. Her surgeon was really happy with it. She'll keep this cast until mid-January. Then she'll move to a splint that can come on and off.  She'll keep it on most of the time for a while, but will be able to take it off for baths. Eventually she'll move to a night-splint, which is what she was doing before we started all this.  She'll continue to wear a night-splint until she's done growing. She has a pin in her wrist still that will stay for about 6 months. The procedure to remove it, while technically "surgery" requiring anesthesia, is very quick and easy.  Looks like we'll do that early summer.  When Sadie heard that, she at first wasn't happy with that idea, but her dr. assured her that 1 week later she could go back to swimming and whatever other summer fun she wanted to do.

Sadie relaxing before surgery

Sadie's arm pre-op
Several hours after surgery. Trying to talk to Hannah, but was feeling too yucky.
Morning after - feeling much better and out of bed
Hey nice nurses and doctors - I'm good now so help me break free of this place!
See? I needed to get home so I could help Barbie perform surgery on my dog.  Now that he has a fixator - no running or being active!
A couple weeks later - my new Christmas cast!
I can not say enough nice things about everyone involved in her care.  Her surgeon is first of all a top-notch surgeon. And he's a good doctor and communicator.  He answered quite a few e-mails from me during the 4 months she had her fixator.  He has encouraged me and encouraged Sadie, even addressing part of an e-mail to her directly telling her how proud he was of her for dealing so well with the fixator. Then, after surgery she got a card in the mail from him telling her what a great job she did.  And he has worked so well with us being out of town, helping set up x-rays locally that we could e-mail him so we didn't have to take quite as many trips.  And when I asked if he could do surgery the day after Thanksgiving because we were off of school and work already, he agreed. I didn't learn until later that he really did that as a favor to us. He wasn't doing any other surgeries that day. Sadie was his only patient. He came in and did her surgery, set things up for her to be admitted, talked to me, and then left to go sell Christmas trees with his son's baseball team.  His assistant is also super sweet and personable and very responsive to any questions I have. Even the x-ray people there and the "cast guy" (I'm sure he has a more official title!) are great. They are never in a rush and take the time to do things right and take the time to talk and explain everything to us.  After her last surgery, his resident even left me his cell phone number so we could reach him immediately instead of going through the on-call service the night after surgery. Okay, so *everything* isn't perfect. The OT's in the office next door who make her splints are a little hurried and grumpy sometimes. They really get grumpy when we show up for a splint without an appointment. But it can't be helped - we need a new splint when the dr. says we need a new one and I do let them know when I suspect we will need one. But I don't always know.  And the OT's billing practices leave a bit to be desired. But we keep going to them because they do a good job and do it right.  And so far, I've been able to work out any billing conflicts with them even if it takes a while. So I can live with them being a little grumpy from time to time. But overall, I'm so thankful to have this group of medical folks on Sadie's team and it is so worth the back and forth driving to Atlanta. (AND, as a bonus, construction on I-20 has suddenly gotten so much better!)  Plus, Sadie likes that we stop for lunch or supper (depending on appt time) on the way back usually. This time: Golden Corral where I let her have the very rare treat of cotton candy!. And yes, she totally travelled to her appointment in her pajamas, robe, and santa hat.

Sunday, December 01, 2013

Sadie's Birthday, Halloween, Fixator Update

Sadie celebrated her 8th birthday in October with a science party. She had a blast and I think her friends did too.

For Halloween, I took a surgeon and a hot dog out trick or treating.  We went with our good friends and had a blast hanging out with them!

Sometime early-mid November, we reached day 100 of the external fixator. So, we celebrated it, complete with muffins in the morning and a trip to Chuck E. Cheese.  We also started the last 20 days countdown with an advent lego calendar. Only, we weren't counting down to Christmas yet, but rather to surgery day. Sadie has been a trooper and handled the fixator so very well.  It did start to get a little old at the end. So we started spicing things up by decorating her fixator cover a little more often.

This girl amazes me with her resilience!  Thanksgiving and surgery pictures coming soon. :)