Sunday, January 25, 2015

Implant activation

I have done this before, where I watch a child get their implant turned on.  It never ceases to loose its wonder at what a miracle these implants are.  I got teary eyed as I watched my boy get sound in that left ear.  He was so excited.

Yesterday when we got the final check up from the surgeon and were handed our briefcase full of implant goodies, it was like Christmas morning.  We actually stopped in the hallway of the hospital so we could open up the briefcase and look at all the good things inside.  My son looked like a kid on Christmas morning.  He would lift various boxes out and I would tell them what they were.  He wanted to take the implant out and wear it so he could get used to it before our appointment the next day.  I had him wait.  When I dropped him off at cub scouts after the doctor's visit, he wanted to show all of his fellow cubs his loot.  The cub scouts ooh'd and ahh'd as they were shown remote controls that can be used for the implant and the aqua+ accessories that would make it possible to hear underwater.  The cub scouts naturally did not understand what all of that meant, but the cub scout leaders asked about the aqua+ and were impressed that now my boys could hear under the water while they swim.  I told the boys that now the ear was bionic.  That was impressive to them.

We almost made the same hotel mistake we made with Chance a few years ago....that is we almost let our deaf child go into the ONE bathroom that we all share and lock the door.  Deaf kids can't hear anything in a bathroom with a locked door and no hearing devices on.  Therefore, they have control over the entire family who may need to use the facilities or get in to shower themselves.  You can't knock on the door and tell them to hurry or to get out.  They just get out when they are good and ready and can't hear any pleas for bathroom use.  Luckily, our hotel bathroom door had a glitch that wouldn't let it close all of the way.  It would close most of the way, but you could open it if you pushed on it.

I wonder what would happen if we knocked on the door of the people in the next door to us in the hotel and told them,"Our deaf child has taken over our bathroom and he can't hear us so can we use your facilities right quick?

(Come back tomorrow for pictures...)

Sunday, January 18, 2015

Surgery and the mummy wrap

You can see that he got his hearing aid back right after surgery so he could communicate.
Here is our boy right after surgery.  Once he went back to surgery, we all sat in the designated room for relatives waiting for loved ones in surgery and well, waited.  There is always a sense of excitement with butterflies in the stomach when one of my kids is in surgery receiving a cochlear implant.  I know that this surgery is about to change their lives forever.  They will be able to hear and in this case, my son's hearing will be restored as much as is possible.  The hearing that was taken from him from a still unknown source.  It is still weird to think that something went in and attacked my son's hearing and stole almost all of it away in his left ear.  We knew all of the best doctors.  We knew where to go to check things out.  We got all of the tests the professionals knew to give. And yet, still we don't know what took my son's hearing.  It still freaks me out a little to think his hearing was stolen and we don't know by what.

But now, he has an implant and that is going to help him hear again.  After the surgery was over, the surgeon came to talk to us and tell us how the surgery had gone before we saw our son.  The surgeon said that the surgery went really really well.  He also said if any surgery was going to retain any residual hearing, this would be the one.  We were praying for that.  Our audiologist will test in the next few months to see what hearing has been retained.

When we went into see our boy, he was still asleep after surgery.  We sat by his bedside so that we would be there when he woke up.  I just love these kids and want them to see me when they first come out of surgery.  They always look a little disoriented like they are trying to catch their bearings, which is totally to be expected.  Naturally, we took pictures, because we parents like to document these momentous occasions in our children's lives.

Nurse Chance

Chance was so cute helping out his brother.  He kept a good eye on his little bro, and when the nurse came in and suggested that his little bro try to eat something, Chance took the lead and wanted to help him with his first food after surgery.  Chance also was the one who jumped up and wanted to help his brother when he had to use the restroom the first time after surgery. Chance was a personal nurse on surgery day.

I think it was interesting for Chance to see the implant surgery from the other side.  He got to be in on the excitement and anticipation on the waiting side rather than the receiving side.  And Chance is SO excited that his brother got an implant.

Leaving the hospital after surgery being pushed out in a wheelchair by a nurse.
We left the hospital with a mummy wrap on the patient's head which is standard with an implant surgery.

We left for home later than we had anticipated.  The surgery got done later than we had originally thought and then we were waiting for our little son to come out of anesthetic and stay awake for a bit.  We started home in the dark and in rush hour traffic, but all was well.  Our son was peaceful with no indication of any pain whatsoever and it was kind of pretty watching the lights in the dark with a touch of snow.

We were very blessed as members of our church group had kept tabs on us during the day, praying for us and provided dinner for our family for the night of the surgery and the next night as well.  Homemade delicious meals were dropped off at our house so we didn't have to worry about cooking dinner for the other kids when we got home.  The meals were delicious and we enjoyed them immensely.

When we got home, our little son just continued to go in and out of sleep.  When we went to bed, we were concerned because there had been no pain medication given since surgery and we were afraid that he would wake up in a lot of pain.  So we woke him up and gave him some pain medication.

Our son never actually asked for pain medication after the surgery.

Not the next day, and not the next night.

We would ask him if he hurt and needed some medication and he said no.

We didn't want to push him into taking medication, but it did freak us his parents out a little.  We knew that the surgeon had literally drilled into his skull and to us, that meant there should be some pain involved. We of course, did not want to remind our young son that this had happened, but he did not seem phased by pain after the surgery.

He was a little trooper.

Monday, January 12, 2015

Twas the night before surgery

The short version of this post is that the surgery went really well and now we have a third implant in the family.  Well, we have all of the equipment for a third implant, the last one put in this week has not been activated yet, but all of the parts are there!

For an extended version of  how the implant process went, see below:

Our little son was a little nervous the night before surgery.  He is a very inquisitive boy and a deep thinker.  He asks lots of questions and is curious about how things work.  We had role played as a family what would happen during the surgery, and our little son smiled and played along.  

When we first started talking about implants,  and Chance was talking about how awesome they were, our little son shook his head no when asked if he thought an implant would be cool.  When we asked him why, he said because he didn't want them to cut into his head.  That is a valid concern for a kid.

Close up of the shaved sides of his head the night before surgery.
We had such little notice for the surgery, that we really didn't start talking in depth about it until 5 days before it actually happened.  We answered any questions about the surgery, showed pictures of what the implant would look like inside the cochlea and talked about the fabulous accessories that would be coming with the implant.   Chance was delighted about the surgery.  His brother was more contemplative and would answer, "I don't know," when asked how he felt about the surgery. This is my child that even when he was really little, it was hard to get out of him what happened when he  got  an owie.  He just doesn't like to talk about it.  Unless his siblings are the cause of his discomfort, then he lets me know without much of a problem. 

The night  before the surgery, we let our surgery-bound boy eat whatever he wanted for a bedtime snack.  Usually we give the kids an option of a cheesestick or banana, but on this night, we let our son have what he wanted, and given this grand choice, he chose cereal.  And he ate a piece of toast, and drank some water.  In the end, I think his eyes were bigger than his stomach and he ended up uncomfortably full.  

Then the nerves kicked in.

He said he felt sick, and had a REALLY hard time falling asleep.  He told me he felt like he was going to throw up and that he was,"too sick for surgery tomorrow."  

I told him that was OK, that we didn't have to worry about that yet and rubbed his back and told him stories.  He climbed in my bed and slept there all night next to me after finally falling asleep at around midnight. 

The following morning, we just picked him up and loaded him in the van so as to minimize his time to worry.  He would be changing into a hospital gown when we got there anyway, so we figured he could travel comfortably in his pajamas.  

The only thing was, we forgot his shoes.  In his nervous state the night before, he had worn them to bed and after he fell asleep we removed them and put them by the side of the bed.  Then, we forgot to take them with us to the hospital.

It was snowing and cold outside so we decided that one of us would just carry him into the hospital after driving up to the door.  About 10 minutes before we got the hospital, the water and milk our son had consumed the night before kicked in.  This is the child who frequently gives little warning when we travel that he has to use the restroom.  By the time he mentions to us that he needs to go, he needs to go right away.  So ten minutes away from the hospital, he tells that he needs to go the the restroom....really bad.

Getting ready for surgery with the nurse
We pulled up to the hospital entrance and Chance and I ran in with Chance carrying his brother while daddy parked the car.  Once inside the hospital, Chance's brother wanted to be set down and that was how he ended up walking down the hospital corridor in pajamas, with no shoes briskly headed to the restroom.

A surprising number of people noticed that my son had no shoes on as they would look at his feet and then look at me with a look that said they were trying to figure out if I was taking good enough care of my child.  Hey, out of the two kids with me, one was completely dressed including shoes.  The other child was in pajamas and barefoot.  I did good with one out of two which isn't bad:) And my theory is, you should never judge people in a hospital, you just never know what they are going through. 

Once back in the room, the nice nurses let our son take in a quick shower.  Since he had been so nervous the night before, we had not showered him then.  And in the morning, we didn't shower him because we figured just taking him from the bed to the car would be in his best interest.  Having done this surgery 3 times now,  we knew that the surgery site would need to stay dry for several days following the surgery so we squeezed in a little shower at the hospital.  It added to the adventure.  Especially since the water wasn't extremely warm, and the shower head was nearly completely clogged, allowing water to come out of only two holes - increasing the pressure in those two holes...
I could tell that my little son was feeling nervous so I joined him on
 the bed to watch some cartoons

The surgery before ours took a little longer than they thought it would, so we sat in the hospital room talking and watching cartoons.  The nervousness from the night before was mostly gone, though after the nurse left and said she would be back soon to take him back to surgery, I could tell my little son was starting to feel nervous again.  I climbed up into the bed with him and together we laughed through a cartoon until it was time for him to get on the gurney and head back to surgery.  He held my hand as we walked down the hall, and the nice hospital staff let him take his stuffed bunny, which was dressed appropriately in surgical gear bought for this very occasion back into surgery with him. 

Chance supporting his little bro.
We had one last stop before surgery and that was behind a curtain while we waited for the anesthesiologist and surgeon to come talk to us.  Our son reluctantly parted with his beloved watch and then he started to get  a little nervous again.   Our kids don't have ipads or anything like that which comes in handy in situations such as this because they are really excited if we let them play games on ours.  We started playing a game together on the ipad, and by the time the anesthesiologist came back to talk to our son,  he was well entrenched in a game.  We took the ipad from him right as they were wheeling him back to surgery so he didn't have much time to worry about where he was headed.

Chance came along for moral support and he has been so cute with his brother helping to make sure that he is taken care of and looked after.

Implant number 3, here we come!