Cheaters

So Brook's foot is so much better! It's completely healed, although the skin isn't nice and perfect yet, it's pealing quite a bit but after the damage she suffered, it's expected. She's even back in the pool which is fantastic since next week is her surgery and she won't be able to get in for a while after that.

The ENT's office called and informed me she will not be tested for Angioedema while she's asleep. They aren't allowed to perform routine lab screenings under sedation anymore so we'll test her later. She's still on schedule for next Wed. for the tonsillectomy and adenoid removal.

Now the story...
So Brook and I are in the pool yesterday, and she was bored and tired of pulling me slowly around while I rest lazily on the float so we came up with a game. Now remember, she doesn't hear anything while swimming (and no we aren't interested in the waterproofing of the implants). The idea was for us to take turns on the float, lying with our eyes closed, and have the other person turn us around and around and around and then we point (eyes still shut) in the direction we thought the house was located. If you get it right, you get lots of cheers and praise while a wrong answer would earn you a thumbs down. I'm talking big fun here! lol

It only took me two turns to realize I was cheating without meaning to. I could hear the filter which is on the side facing the house and since I couldn't turn my ears off, I had to pretend to give wrong answers from time to time.

After Brook had a few turns, she smiled and confessed, "Mama, wanna know a secret? If you just feel the sun, you can tell where the house is." And she smirked and giggled because she too was accidentally cheating. It was about 2 o'clock and the sun was actually right over the house at that time. She couldn't cheat with her ears, but could with her skin.

If you haven't noticed, I have other blogs as well that aren't about hearing loss.  The Road (click here) and One Brick Shy (click here)

Let us Pray

Oh man, I had secretly hoped for a small miracle when I took her to our favorite Doctor in the whole wide world yesterday. Our lovely Dr. W. However, he agreed with the local E.R. Docs and Ped. that she needs her tonsils removed and possibly adenoids as well. HOWEVER, I did find out that he uses a different technique than he normally does on his patients without cochlear implants than he does on the ones that do have the internal devices. Certain instruments can't be used on the head/neck (at a minimum) with people who wear cochlear implants. Most of us received paperwork from the companies that made our children's devices that list cautions about such...monopolar instruments in particular.

He will use the laser on her which will possibly make her recovery a little easier (he doesn't know her very well, lol) BUT it increases her chances of a re-bleed from 1% up to a 3%. I know these small chances mean nothing to some people but we take them very seriously because in the past, with the other child, we typically fall in those small percentages. He will also have her tested for the Angioedema we had Gage tested for. (Read here about the blood disease that runs in my family). So we wait about six weeks or so and let her enjoy her swimming (no swimming for 2 weeks after) and the big chunk of her summer before she goes in.

I so dread this. She's way more dramatic because she's just like me and she's not been thru near as many surgeries as her big brother, so I'm sure this will call for extra support from the nursing staff to drag her back there when it's her turn to go into the O.R. She's a fighter so I hope they start working out now! But we have several weeks before we have to worry about all that! She should be all better by the time school starts on August 15.

Incision Decisions

Well, his cochlear implant surgery was on Oct 18 with a follow up O.R. visit on Oct 27 to close the incision that popped open in front of his ear and one more final trip on Nov 11 to remove stitches and have his final 'clean up' so here's what we're left with. There's this one tiny spot on top that was slower to heal than the rest. We'd get a good clean scab on it and keep polysporin on it, only to have it ooze out of the blue at which time we'd revert back to peroxide for cleaning, followed by more polysporin. The problem is, we kept doing it over and over without accomplishing a final and complete healing of the incision. So, I called the surgeon this week, told him what was going on, got the oral antibiotic and prescription cream and already it looks much better to me! No yucky stuff at all anymore, we have a healthy looking scab. So hopefully by the end of next week, we can say he's good to go. He's getting tired of not riding his four wheeler but I can't have his helmet rubbing off the scab so I told him he's gonna have to wait a couple of more weeks at least. He's fine with that.

On a side note, I just spoke to both of my deaf children via walkie talkie. I know I've put up a video of that before (see here-2009) but I'm amazed every single time I hear a sweet little voice say "Mama, it's not very cold out here. We're out by the tree house." I always ask a question to make sure I'm not kidding myself, and see if they truly can understand me without being in the house with me..."Do you see the dog anywhere?" and then I hear, "He's right here playing with a dead armadillo."   NICE.

Last update, my niece doesn't have Angioedema either, last one to check is Brook, anyone wanna hold her down while they draw blood?

Once again...

So...
our patient has been doing extremely well since receiving his new ci on the 18th. He was activated this Tuesday only a week and a day post op, and he did fabulous and is beginning to make sense of all the 'robots' that are talking. He's gonna do great when we get his map just right and we hope that he'll start back school at some point next week.

We had a minor set back on Monday night after he went to bed. He came and got me out of bed and said, "Mama, check my surgery it's stinging here (in front of his ear where a scar had been revised during ci surgery) and see if it's bleeding"...
Well it wasn't bleeding, but I kind wish it had been! I won't get too graphic but due to the steroid injected during the revision to keep it from bulging again, it kinda just split back open without bleeding, (it had been cauterized during the surgery so I assume that's why it didn't bleed)...but I'll be honest, had there been blood, I wouldn't have seen EVERYTHING under the skin....(shudder)...
I hesitated on taking him to ER, we had an early morning appt. w/his surgeon anyway so we decided to steri strip it to kinda hold it together and keep it covered til we saw his surgeon...this is on his face so we wanted to be sure we did the right thing. Got to the surgeon early the next morning, he took one look at the gap which at this point was open at least half an inch (again, shudder) and he closed it back w/the steri strips to tell us he needed to be taken back to the O.R. to fix that!
We showed up the next morning (yesterday) and had it repaired and he also cleaned his other (the ci) incision as well. There was a spot on it that was getting kinda yucky so he did stitch that a little too so all in all, he was back there a good hour or hour and a half, but he is all fixed now. We do need to return on 11/11 to do a brief sedation and remove these stitches. There is no chance Gage would sit still and allow his nurse to remove these w/out causing further damage (his ADHD-even medicated-won't allow it) so we will have to go back and make sure everything is removed, no signs of infection or anything and he should be finished!
Poor guy can never just have it easy...but I can already tell you that today, it all looks great and much better than it did the last few days! We are on another round of antibiotics and I hope to send him back to school like Tues. or Thurs of next week. He has mapping on Wed. so we'll work towards that time frame, it just won't be Monday like I'd planned. AND the best news, he does not have Angioedema like my sister and Dad and other family members! That blood disorder I referred to in an earlier post.
And that's it so far!! He is still home w/me, doing school work from here. He will get to participate in all the Halloween activities on Saturday but I'll likely have to make him wear his head band like seen above to keep it covered. He's getting older so I may just paint something on his face and be done w/it. He wants blood tears to be kinda creepy so we may do that. So I guess he'll be some type of 'injured' person w/bloody tears. B is gonna be a witch, or a rabbit, or have her face painted as well. She is female, so her ideas can change quite rapidly. *smile*

the zipper

I think the surprising thing for folks is how quickly they seem to 'return to normal' as far as bouncing back after surgery. Here it is in pictures...
Before surgery he had to wait like four hours before he was called in, to roll down the hall to his cotton candy flavored anesthesia...he was literally bouncing off the walls! No ADHD meds combined w/anxiety set this kid in overdrive!

He finally stopped his giggles and got a little irritable with lack of drink/food. He announced to everyone that passed his room, "I'm starving!!!" One lady walked in about to make sure he had all that he needed (to be nice) and he asked if she had food or could she get him some...when she said pleasantly said, "No, I can't offer you food, drink or a way out, sorry!" he decided to say in the nicest way possible, "Take a hike!" (I am not kidding) Luckily she thought it was funny and gave him a little stuffed animal and she did just that.

Here he is on his way back in...poor baby. He is full of all kinds of medication!! He tends to get very sick after his surgeries so we opted to use all medication possible PLUS acupuncture. Never would I thought we'd need that, it was just sugar/water but some people claim it helps and guess what...he got nauseous a couple of times but he never threw up! YAY! It's tough when your kids is bent over w/spit dripping from his mouth, throwing up while exclaiming in between "I'm so hungry". So luckily he avoided all of that this time.

Blood Disorder
For those on Facebook, I mentioned a blood disease. In our family, we have a strong presence of something called Angioedema. It doesn't affect me or my personal family (that we know of) since usually the kids will show signs/symptoms by Kindergarten. But to be on the safe side, we wanted to go ahead and check Gage. His surgeon offered to check while he prepped him for surgery after sedation so I said "Great". This way we'll know for sure. This can be a very dangerous, even fatal disease. Not for the blood disorder itself, but the symptoms! Males can usually take an oral/daily steroid to ward of these unpredictable swellings. Those affected can have almost any part of the body swell w/very little (if any) warning, this includes the throat and organs, hands, digestive tract, anything. My sister has it (bad) and sees a specialist in B'ham for her condition and is followed closely. Her daughter is about to have her blood tested for the condition so this is why I thought of having him checked. We'll find out when we see our doc Tues. for post op (he also gets activated that day).

As you can see, very early the next morning, he's playing, waiting on his turn to be released. The resident who changed out his bandage noted what a great speech reader he was. We got home about noon yesterday and he's still needing stronger meds than the average ibuprofen that he normally takes. I think now that he's older, more aware of pain, etc. he's requiring a little something stronger.

He's doing great though, I hope I can get him to relax at some point today, watch a little tv. I know he's got lots to do after we do a little school work...he's ready to work on his trucks he bought at the thrift store. I'll get to write a few articles (I hope) while he does that. I'm so glad this one is behind us and he'll be able to hear better soon. He has the N5 now. For those keeping score, this is his 4th device... he's had one on each side removed/replaced. He lost one to infection and one to improper functioning. He had one aborted attempt (his first ci surgery when he was almost 2) and one removal surgery to take out infected ci, so that brings his ci surgeries to 6. He said the worse part was smelling the oxygen mask after the cotton candy faded, the ringing in his ears and the stinging after meds wear off. During the day I have more control and can sort of prevent the pain but I set an alarm for the midnight meds and last night he was waiting on me in pain (just a couple of minutes). He's fast asleep now.

Brook is doing better w/her strep. She should wake fine, take her oral meds and off to school she goes. Again I apologize to the teachers who are calling on me to sub, luckily most of you love us and understand when I remind you why I can't for a couple of weeks. He is a trooper. He is amazing. He is a happy little boy!

This child probably feels like he has a zipper on each side of his head...

Keep in mind this is not your typical ci surgery...he had a keloid scar removed in front of his ear, it could possibly come back but maybe not...they went in the same scar(s) as before and it went quite well...his heart rate kept dropping a bit while he recovered in his room while sleeping so they gave him extra fluids and he was fine.

Today we shall begin school work (spread throughout the day, not to overwhelm) We may begin with a couple of worksheets (simple) and do something fun like make his environmental poster for keeping our county clean & healthy for Science.
(to be continued)