Today I drove Malachi (Brian didn't come) down to MUSC to see the audiologist to reprogram Malachi's left processor.
Driving 2.5 hours there and then 2.5 hours back with a 16 month old, by yourself, is a form of torture.
We started off with a booth test to see how he was doing with the current programming. He only cooperated for about 5 minutes. At that point she figured he was hearing around 50 decibels. It's hard to tell with Malachi because he only responds the first time he hears a sound. And if he responds, it's usually quick and discreet...a quick look up or to the left. Sometimes he just stops and stares. We never know!
After that we headed to the office where we hooked up his processor to the computer and reprogrammed it. The process of programming is very similar to a audio booth test. She adjusts the processor and we either clap, say words or sounds or she sends a series of beeps to the processor for Malachi to hear. Then we wait for a response from him. So, we had the same frustrations during the programming as we did the test.
We got to the point where the audiologist had a good idea of where Malachi was hearing so she turned up his processor. He handled the adjustment really well so we went ahead with that and an extra program to switch to after a week.
Next, to make sure that the new program was working we popped back into the booth to check his hearing. He was even LESS cooperative this time around, if that's even possible. In order for the booth audio tests to work we have to condition Malachi to look to the sounds that he hears. If he looks correctly then a flashing light/Goofy toy is lit up in the corner. It just so happens that Malachi is not impressed by this method. He does not think the toy is interesting. Not to mention he is very curious and quickly gets bored sitting in there in a chair. That brings up the problem up of simply paying attention to the sounds. We somehow need to teach him to want to listen to those sounds and SHOW us that he hears them. I'm thinking a treat of some sort may be needed next time. Like fruit snacks or Dots candy. If anyone has any brilliant ideas, let us know!
His next appointment is in two weeks, November 9th. That's the day we'll be activating his right ear and then we'll also be reprogramming his left ear. We are very excited :)
Wednesday, October 26, 2011
Thursday, October 13, 2011
Right CI Surgery and More
Yesterday Malachi had his right ear implanted with the Cochlear Freedom internal cochlear implant. It is a different internal implant than the one in his left ear (Nucleus 5).
He also had tubes placed in both ears because he has continuously had ear infections (9-10) since January of this year.
We went through the same process as before, with his left ear implant. We checked in at 6 am and started pre-op quickly. Something happened with our doctor and we were delayed about 20 minutes. There were several things I wanted to address this time around:
-Malachi had a stitch on his left ear incision pop through and it wasn't dissolving. I asked that they cut it down so it wouldn't rub on his processor and get infected or agitated.
-I wanted to make sure that they knew Malachi would wake up angry and would try to rip out his IV. I asked that they give him something to calm down initially.
-I asked that they pump his stomach to help with the nausea from the surgery and morphine.
This experience was a bit different in the sense that I felt a lot more confident at the hospital. I knew what the procedures were. What nurses and doctors would be visiting and talking to us, etc. I felt much more calm knowing what to expect.
Malachi was pretty content and happy on his way to the OR. We had stepped aside and as the nurse was rolling him out she would clap and he would clap back. It was cute to watch him flirt and show so much love to someone else.
After about 2.5 hours of surgery Malachi was finally all done. He received tubes in both ears, and a cochlear implant in his right ear. The ENT told us that his ears were a bit inflamed so they were already starting to get infected after 3 days off of antibiotics! The implant went in great as well as the tubes.
The main difference between the left ear surgery and this right ear surgery is that in the left ear they were able to cauterize thoroughly. Malachi had virtually zero drainage. This time it's different. Because Malachi now has metal in his body (the left cochlear implant) they were not able to use the same tools for cauterizing. The resident told me there would be more oozing and drainage than before. Well there wasn't any before so I was thinking a little bit of liquid. It's been quite the opposite. The drainage is dark pink colored. Mixed blood and the sterile liquid they use to irrigate the inner ear. I had to change the gauze after about 20 hours because the gauze was just saturated and if Malachi leaned against anything he got it wet.
When I first changed it I didn't look in his ear canal, just the incision behind his ear. The incision looks great! It's swollen, but otherwise looks awesome. After several hours later I realized Malachi's gauze was soaked again. This time when I changed it I looked into his ear canal. It's completely filled with liquid and slowly dripping out. It is very disconcerting to see bloody liquid drain out of your child's ear.
I called the on-call pediatric ENT at MUSC and after explaining the situation to her she believes the drainage is well within the normal standards at this point. She was able to give me more specific guidelines for the drainage so I am feeling much better about it.
Hopefully I'll be able to post some pictures soon....when his ear stops dripping!
He also had tubes placed in both ears because he has continuously had ear infections (9-10) since January of this year.
We went through the same process as before, with his left ear implant. We checked in at 6 am and started pre-op quickly. Something happened with our doctor and we were delayed about 20 minutes. There were several things I wanted to address this time around:
-Malachi had a stitch on his left ear incision pop through and it wasn't dissolving. I asked that they cut it down so it wouldn't rub on his processor and get infected or agitated.
-I wanted to make sure that they knew Malachi would wake up angry and would try to rip out his IV. I asked that they give him something to calm down initially.
-I asked that they pump his stomach to help with the nausea from the surgery and morphine.
This experience was a bit different in the sense that I felt a lot more confident at the hospital. I knew what the procedures were. What nurses and doctors would be visiting and talking to us, etc. I felt much more calm knowing what to expect.
Malachi was pretty content and happy on his way to the OR. We had stepped aside and as the nurse was rolling him out she would clap and he would clap back. It was cute to watch him flirt and show so much love to someone else.
After about 2.5 hours of surgery Malachi was finally all done. He received tubes in both ears, and a cochlear implant in his right ear. The ENT told us that his ears were a bit inflamed so they were already starting to get infected after 3 days off of antibiotics! The implant went in great as well as the tubes.
The main difference between the left ear surgery and this right ear surgery is that in the left ear they were able to cauterize thoroughly. Malachi had virtually zero drainage. This time it's different. Because Malachi now has metal in his body (the left cochlear implant) they were not able to use the same tools for cauterizing. The resident told me there would be more oozing and drainage than before. Well there wasn't any before so I was thinking a little bit of liquid. It's been quite the opposite. The drainage is dark pink colored. Mixed blood and the sterile liquid they use to irrigate the inner ear. I had to change the gauze after about 20 hours because the gauze was just saturated and if Malachi leaned against anything he got it wet.
When I first changed it I didn't look in his ear canal, just the incision behind his ear. The incision looks great! It's swollen, but otherwise looks awesome. After several hours later I realized Malachi's gauze was soaked again. This time when I changed it I looked into his ear canal. It's completely filled with liquid and slowly dripping out. It is very disconcerting to see bloody liquid drain out of your child's ear.
I called the on-call pediatric ENT at MUSC and after explaining the situation to her she believes the drainage is well within the normal standards at this point. She was able to give me more specific guidelines for the drainage so I am feeling much better about it.
Hopefully I'll be able to post some pictures soon....when his ear stops dripping!
Saturday, October 8, 2011
Cochlear Processor Equipment
Alright. After Malachi was activated, our audiologist gave us this monster of a case:
It's huge people. The picture just doesn't do it justice. I thought I would explain all of the "equipment stuff" that came with Malachi's Nucleus 5 processor because I honestly had no idea what to expect, and my mind was kind of blown by everything you need!
The "extra pieces" are the coils, ear hooks, wires, and magnets that are small pieces and tend to get the most use and are lost most often. We also have different sizes of ear hooks to grow with him as his ear get bigger. The white cases are the original cases the processor, coil, remote assistant came in. We have euro adapters for the remote assistant and rechargeable batteries in the event that we travel outside the US.
The "Cedis" white box is full of drying packets for the traveling case. I actually forgot to get a picture of the traveling case. I'll explain what they are for later. I have a headset (ear buds) that I can plug into the processor to make sure the microphones are working properly. We are only using rechargeable batteries right now, but we do have extra zinc air batteries. You use two per processor. They are like super hearing aid batteries. The audiologist told us if we used regular hearing aid batteries they would only last about an hour. Last is the pocket to hold all the accessories and batteries.
These are all the manuals for the remote assistant and processor.
Now the fun stuff. These are all the little accessories. The blue covers are kind of fun. We have two of them because cochlear gives you two processors per ear in case one fails, you then have a back up. Below those is the processor with the snug fit piece and coil/magnet attached to it. The coil is what connects to the internal implant and turns it on. The processor has the microphones on top and takes in the sound and processes the sound into electrodes to be sent through the wire, into the coil and then into the implant inside Malachi's ear. The snug fit piece helps keep the processor on Malachi's ear when he is rolling around. It's also helpful for older kids that are running around and/or playing sports. There are three types of batteries. The regular rechargeable, the compact rechargeable (that is what we currently have on Malachi because it's smaller and not as heavy), and the zinc air batteries with cover. I haven't completely mastered the remote assistant, but it's nice to be able to check the status of Malachi's processor without taking it off his ear. It kind of looks like a iPod lol. The tool is a little pick that I use to turn small dials and nobs on the processor to lock the the batteries into place so he can't take it apart.
Finally, on the left is the rechargeable battery device. I can also plug the remote assistant into this to charge. Oh and did I mention that the remote assistant charging cable is a USB? Yes, I can charge it and plug it into my computer. Crazy. The Zephyr is a dehydrator of sorts. Inside is a packet of special chemicals. It plugs in and at night I put the processor inside and turn it on. It removes any moister build up. It lengthens the life of the processor by doing this.
Cochlear actually forgot to send Malachi's back up processor, but luckily we haven't needed it! They expedited it to the audiologist next day, but then she has been gone for two weeks because she got married!
It's quite the crazy set up and from what I understand, we'll be getting the same stuff for the right ear. Also of note: This is what the case looks like after I thoroughly dejunked it and threw out all the extra boxes and papers that we not necessary.
If you have any questions, let me know and I will write a post answering anything I missed :)
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