Things to Remember for Next Time

We are now 5 days post-op, and Peter is pretty much back to normal!  He had one dose of infant Tylenol yesterday, and he hasn't been acting uncomfortable otherwise. I am still being super careful about the surgery site, just to make sure I don't snag the tape when he is nursing, or that he hits his head with anything.

I wanted to jot a few thoughts down about the surgery, so I remember for next time.

First, I now know where to check in! I didn't that morning, and there was no appointment reminder in my email, or appointment listed for Peter on the Kaiser website.  I need to ask the ENT why, as it kinda made me panic (just a tiny bit) when I didn't have any kind of written confirmation of his surgery date/place.

Peter was apparently smiling and flirting until he was asleep. The Dr.  commented on what a happy boy he was.  Waking up was another story. The surgeon said he was STRONG and flipping around trying to get out of the crib. He only calmed down when the anesthesiologist held him, which she did happily. That is he I found him- all google-eyed from the drugs, seeing two (probably) of  the anesthesiologist, waiting for me to take him.

I was able to nurse Peter right away in recovery. He fell back asleep, but was much happier. Negotiating the IV and the other cables attached to Peter was a bit of a pain, and more so at night, but it was ok. I did sit all they way up to nurse Peter when the incision faced me, just so he would not be lying on that side to nurse.

Sleeping with my boy that night was fine- though I did have to sign a form that if he fell out of bed it was my fault. The hospital staff was happy to swap out the hospital crib for a regular hospital bed, and bring extra pillows for me. Peter slept really well, but I didn't because of all the status checks through the night. Next time I really need to make sure I am starting the ordeal well-rested!

I need to take more food for myself! Once we were in the hospital room they didn't offer anything for me! They did say they had stuff for Peter if he was up for it (he wasn't), but if Chris hadn't brought me dinner I would have been mighty hungry. They were good about holding/watching Peter if I needed to leave the room, so I suppose I could have gone to the cafeteria had I wanted to leave my boy for more than a minute ;)

Clothes- I had read on another blog about taking button/zip front clothes that wouldn't need to go over Peter's head. Great idea, and I am glad I did. Just made it a lot easier once we did get him dressed. The night was spent wearing his little hospital gown, because it was easier since he still had the IV and everything.

Overall, leaving the hospital, carrying Peter, the diaper bag, and my bag, felt like a huge relief, and also a little anticlimactic.  There was no wheelchair required, and it felt like we were just leaving a regular   Dr. visit (other than the purple turban). Why was I worried before the surgery? Why couldn't I sleep? It had all been fine- no complications, no bruising, best possible surgical outcome. I guess the worrying is just part of being a mom. I hope next time I can turn it down just a bit, though!

Going Home after Surgery

It is the first night home. Peter is sleeping, though he may be a bit more restless than usual. But maybe it was all that coffee I drank yesterday?  He had a bandage on his head, now he just has a little pad and some steristrips. He was supposed to wear the bandage two days. I got a little more than 24 hours out of the first one, did a second one that lasted maybe 6 hours, then tried the pilot cap on top of it, then stopped fighting. Peter is also supposed to take it easy and make sure not to fall and bang his head for a while. So hard to keep a beginning walker from walking, and falling!  I have made sure his head hasn't hit anything, but this kid as not really been slowed down by this ordeal!  He did not get the heavy duty Lortab (vicodin for babies) tonight since he spit it out all over my face with a big raspberry. I gave him some regular baby Tylenol. He liked that much better. Unfortunately he learned about spitting medicine out, and spit out a lot of his antibiotic that we have to take for several days.  I can't tell how much, so I don't want to give more....Rascal!
We are taking it easy tomorrow, and probably Thursday, too. I hope he continues to heal quickly :)

While at the hospital I had to ask one of the orderlies or nurses to watch Peter when I had to step out of the room. One guy wanted to make sure he knew what Peter needed, and asked what the bandages were for. I said he had had a cochlear implant put in. The guy asked if he could hear now! In his defense he did then say, "or do they have to wait a while?"  But if even someone in the medical field has no real idea of CI's I know I will have a lot of explaining to do. I am thinking t-shirts for Peter that say thing like, "yeah, I have bionic ears" or "you can ask my mom about my Super Duper High Tech ears!"  Any other suggestions for shirts?

Post Op Afternoon

So far Peter has slept a lot. That is OK, as he seems a bit cranky when he wakes up. He might have a sore throat from the breathing tube, or he could have had some lingering Versed effects. He has nursed, and now I don't want to disturb him if he is sleeping peacefully! He is getting an IV with sugar and electrolytes, so he won't be wasting away!

The surgeon said he did great, and that it was successful :)

Surgery Morning

I didn't sleep well last night. I didn't sleep much at all, actually. Today is Peter's surgery day. He couldn't eat after midnight, and couldn't nurse after 3:30 am, so I had set my alarm for 3:00 to make sure he got his last milk in! But I woke up before my alarm because I was a little nervous I guess. Peter nursed, went back to sleep. I didn't. I read and tried to keep my mind off everything. I was worried Peter would wake up at 5 and be grumpy he couldn't snack, but he slept until it was time to leave, then woke up in a pretty good mood. He played happily in his carseat on the way here, which I am thankful for, as it would have broken my heart if he was wailing the entire time.

We got here at 6:25 or so, but I didn't know where to go! Luckily the nice lady at the Ambulatory Surgery check-in directed us to the right department. We got checked in and wrists were banded. Peter kept trying to take his off, and looking at them like they were bizarre.  Everyone checked him out, and I drew a "C" (for correct, not CI) on his left ear, as per the Dr.s request ;) he got to drink the Versed, and he got all happy, but he was NOT going to go to sleep. He played with the curtains, he chewed his sock, he played peek-a-boo, he made loud noises. Then the team gathered to do the last check at bedside before they took him away. The anesthesiologist carried him in her arms, and he was a little upset to be taken away from me. She said once in the OR he would get some gas and be asleep before getting the IV, so he wouldn't experience any pain.

Now we wait for the volunteer to let us know when the electrode is in, and then wait some more....

Milestone Note: First Birthday!

My little guy is 1!

Ready to hear!

I wish I had a video of this- yesterday The dogs were going crazy and barking right next to Peter. He looked at them, and very deliberately pointed to his ear! According to his audio gram he should hear things above 100 dB, and according to a sound analyzer app Trinity's bark is above that, so I do believe he heard it, and was letting us know!  I have been pointing to his ear when there are certain sound he might be able to hear with his hearing aids, like the the microwave beeping (I sign the numbers as we watch the countdown, and point to his ear when it beeps), or daddy's chainsaw (don't worry, we keep our distance!).  I am so happy that Peter picked up on the pointing to the ear gesture!

Milestone Note: walking!

Peter has taken the first step! And second and third!  I know we are a ways from toddling across the room without a crash, but we all start somewhere. We all cheer when he walks, and he looks surprised, like "what's the big deal?"  Yeah, Peter!

Pre-Op checkup with the ENT

Thursday we met with Dr. K for one more time before surgery. She checked his left ear and pronounced it all clear and good to go.  Peter had not napped much, and was a bit cranky, but he really liked looking at the little light she had (is it a otoscope? - the tool they use to see in your ear). She distracted him with the light so I could ask my questions :)
I wanted to make sure the surgery wasn't going to be five hours- so she walked through it.
6:30 -Arrive, meet with her and anesthesiologist, maybe the whole team. Get all the consent forms and papers filled out.
8:30ish Peter will get a drink to make him sleepy. They will then start all the prep- IV, electrodes taped on him, shave a little bit of his hair. This would all take 30-45 minutes.
9:30ish surgery would actually start.  They do not do a "micro incision" but it will be behind his ear, and probably around 2 inches long. They used to drill out a recessed space for the internal magnet all the way down to the dura (membrane around the brain), but they don't go that deep now.  She  said initially the shallower space may make the bump under the scalp more prominent, but there is lower infection risk, and that the skull will grow around it quickly. They anchor the internal piece with two screws into the bone connected by a nylon strap. The strap and the  recession ensure there is no migration of the internal piece. The electrode is then placed. She ordered both shapes of the electrodes AB offers, plus backups of both shapes. One is a J shape, and the other is more of a coil.  Once the electrode is placed they will take an X-ray to verify placement. There has been some info online about using Pre- and Post- implant CT images to map CIs. Dr. K said that you could always get another CT if the mapping wasn't going well,but that she preferred to spare the kids the radiation exposure, and that X-ray machines were portable, faster, and meant less time under. Once the X-ray gives the all clear her part is mostly done. They just need to close everything up. This should be 2-3 hours., then there may be a post-op stop before recovery.
I can be with Peter in the recovery room, and will spend that  night in the hospital with him. Dr. K's practice is to always admit pediatric patients, so the person who said overnight admission was only a possibility was out of the loop.

Now I just have to keep Peter from getting and kind of respiratory illness. Also, no more hearing aid in the left ear. Don't know exactly why, but she said to discontinue from two weeks before surgery.

Once the Left side is activated and we see how Peter is doing we can schedule the Right side, but she saw no issues with late July/early August. She understood my desire to have everything done before I had to start juggling the school stuff again.

Nine Days now until surgery! 

Teletherapy Tuesday 2

Tuesday we had the second session of distance therapy. The Facetine server was having issues, though, so it took 20 minutes to get connected, and it was old-school - no Facetime, no video, just speakerphone. I updated J. on all the signing Peter did this week. Peter vocalized in the background , "ooop, ooop!".  I told her Peter was so excited when I got out "his" iPad, and how he was looking for the video....alas, little guy didn't get to see J., and chances are, even with his hearing aids, he didn't really hear her, either :(

We went over the previous goals, and she had some great suggestions for eliciting more "MORE" or how to get Peter to stick his tongue out (ice cream ;))

J. was impressed that my mom had told me with my first baby to narrate everything, and that we were already doing that with Peter.  She asked if my mom was a speech therapist ;). My mom WAS a teacher, but also a smart, involved mom who raised two very verbal and literate children :D


Some other notes:

Listening

Wait time, waiting 7 seconds expectantly when you think he may spontaneously express a sign or gesture.

Cognition

Anticipating what will happen next... parent holds up bucket of Leggos and begins to dump it out, but waits and pauses expectantly at the top to see if Peter will request the action.  Encouraged Ellen to wait for him to request through gesture plus eye contact if he is not vocalizing. 

Language

Worked on sign for “more” with tinker toys.  Suggested for Mom to bring out box of tinker toys and ask if he wants to play with them, encouraging him to use the sign for “want.”  Then give him one tinker toy and wait to see if he will request more with the sign “more.” 

Speech

Peter stuck out his tongue to imitate his mom twice during the session today.  We talked about using ice cream to encourage this a bit more.  Also a hand held mirror to take turns can help clarifying turn taking.  Also, parent can work on puffing out cheeks, blowing, moving lips around, etc... to see if Peter will imitate those actions. 

Miscellaneous

We discussed the resource, Sound Foundation for Babies by Cochlear, a 40-week post-CI home program that suggests goals and activities for the domains of audition, receptive language, expressive language

The link for Sound Foundation for Babies is: http://hope.cochlearamericas.com/node/2256
 

Something had to give

I feel like there is never enough time for everyone, and there is always more to do. I only manage to get things like teaching a French class done because I figure I will be stressed and overbooked no matter what, so I might as well fit one more thing in.  But my dogs don't get walks, my kids' laundry doesn't get put away for weeks sometimes, and I have a pile "to file" that has been composting for a year. But I have been muddling through. But lately, as surgery day gets closer and my stress level goes up, I think my muddling may have turned to bungling.

I just found one of Peter's hearing aids in the washing machine.

This weekend our washing machine had its own little breakdown. So we took all the wet clothes out of it and tried to reset it. Eventually I found a kid bandaid in what must have been a key spot, because when I turned it on (empty) it worked. When the empty cycle ended I picked up all the clothes on the floor- they were wet, so I thought the pockets had already been searched- and I put them in the washer, with an extra rinse cycle.  All day today I have been looking for that left hearing aid. I knew it was somewhere in the house, but it wasn't in the cases.  I could actually feel my dread increase as I went down to the laundry room. I checked all the pockets of clothes coming out of the dryer and didn't find anything. But as I was putting the now-clean stuff from the washer into the dryer I saw that flash of blue that made me feel like throwing up.  One hour and nine minutes....that's how long that cycle had been...

The hearing aid is in a jar with desiccant beads, but they have been open a while, so I don't know if they are still good.  So I dumped some dry rice in there, too (recommended on a yahoo group for just such an occurrence). I called the hearing aid center, and the hearing aid Audi is on vacation. They said to leave it overnight in the case, try it, and bring it in tomorrow if it won't turn on.  They have a vacuum dryer that might help if the beads/rice don't do the trick. I think it is still under warranty- but would stressed out, overbooked mom be one of the things the warranty covers?

Signs Peter uses at 11 1/2 months

Yesterday Peter showed his ASL skills so many times! He was watching the cats play in the garden and flicked his first finger against his cheek (which is close to the adult sign of thumb and first finger together stroking the cheek). He looked at Chris and signed DADDY (open hand, thumb against forehead). He signed DOG when he met a new dog, and he signed FIRE looking into a fireplace with no fire!  He still hasn't signed MOMMY yet.
Other words he has clearly signed: BIRD (the PetSmart parakeets were a hit), FISH ( there is an aquarium in his room), LIGHT (turning on and off wall switches made this one a favorite) and TREE ( we live among a lot of them ;))

He also has this grasping/wrist curling gesture that seems to mean several things, such as WANT, MORE, and probably a few other things. He is not fluent, or 100% consistent, but I know he grasps the idea of language and wants to communicate and understand.

Hopefully he will start signing BOOK, and not just eating them!

How do you sign to a toddler?

I used to be able to sign during diaper changes....but now I have to hold on to the squiggler and do my best not to make a mess as I change him one-handed. I used to sign while he was in the infant bouncer or the exersaucer, but he is too big for them now!  I used to sign to PJ as he sat on the floor, but he isn't sitting still very much these days. Now, my hands are more likely to be used to "spot" him as he tries to climb stairs, sofas, and stepstools.  Anyone have any suggestions?

BEA Event

The second to last weekend in March (or the penultimate weekend for fellow word geeks ;)) Peter, my mom, and I went to the first Pediatric Bionic Ear Association meeting in the SF Bay Area. We met some friends for lunch at a great Deli (thanks for the recomendation, B.!), then caravaned over. I thought it would be packed, since we have at least three major CI centers around here.  But when our three cars pulled in to the tiny parking area at JWPOSD we had our choice of parking places.
Wrong day? Wrong place? Why weren't there more cars?

There was a mom and daughter going in to the school, so I was pretty sure we were at the right place. Inside there was a table of AB equipment to look at, games set up, a snack table, an AB Rep, but only a few other people.  It was designed to be a social event, so I felt bad there weren't many people.

One sweet girl, whose mom had driven a few hours to come, took an instant liking to Peter. I think she would have taken him for the afternoon if I had let her! She had two CI's, and lived in an area with very few other deaf or CI people.  Her mom had brought her because A. likes meeting other people like herself.  I was so happy to meet her and her mom, who is an active participant on one of the yahoo groups I am in.There was one other girl there with a CI, but I didn't see the two interact much.  The girl who liked PJ, A., seemed like any other girl, except for the fact that she had things on her head.

The other girl had come from much closer- her soccer practice in San Jose, as evidenced by her jersey and shorts ;). Her mom and I talked a bit. The girl is a twin, and her sister is hearing. Both were born very premature, and while in the NICU one needed really powerful drugs to fight infection- saved her life at the cost of her hearing. But now they are both amazing kids and doing great. The one thing the twin with the CI didn't do was play basketball. Her mom had played, and had that dream for her daughters, but the noise level in the basketball court was not something the twin with the CI liked. I know I don't want to put any limitations on anything Peter might want to do, but I filed "acoustic environment of various sports" away as something to think about later.

I also talked to a member of the Adult Bionic Ear Association for a bit. T. has had his CI for about 5 years now.  He lost his hearing really suddenly as an adult due to an unknown cause.  He loved his CI, but was on the fence about getting a second one, even though as the noise levels rose in the room he had more difficulty hearing. (Two CIs help hear better in noise) He did say that if he could have done both at once he would have, but insurance wouldn't cover that when he got his first. One thing that I learn from him is that they use different strategies to map kids and adults. I have not learned much about MAPping yet, but I am sure I will. He said that he was initially really frustrated because he would hear voices well, but his dog's bark was wrong, and when they fixed it so the dog sounded like himself again, the phone would sound weird, and so on. Finally after many sessions his CI Audi suggested mapping him like they map kids- with sensors stuck on his head, and having a computer analyze how his brain reacted to different levels of different auditory nerve stimulation. He said it was an amazing breakthrough that had made all the difference, and that everything sounded so much better after that. I am glad to know the kid mapping works well!

My mom hadn't been involved in much of the CI medical visits, so I thought this would be a good opportunity to see the actual devices, meet users, and meet my friend B., too.  We talked to the AB rep, and she showed my mom the outside pieces, and let her hold one of the pieces that goes under the scalp. The electrode is so small and flexible it is hard to believe what it can do! There is a new Behind The Ear (BTE) processor coming out, but we couldn't see one, because they can't show them at all until the FDA clears them. But my mom did get to see the cute little waterproof Neptune processor, though none of the kids at the event were wearing one.

I think my mom was most impressed with a little 22-month old who had been implanted at 16 or 18 months. The little boy knew all his color words, and impressed my mom as being more than age appropriate in language. I am not sure this experience changed anything for my mom, but I know it gave her some really good examples of what is possible.

Teletherapy Tuesdays

We had our first teletherapy session a little over a week ago.  I wasn't sure what to expect, as the literature said we were responsible for being prepared with whatever had been requested, but I hadn't gotten any emails or calls. I didn't even know who was initiating the FaceTime session.  Luckily J. called right at 1:00, and Peter was REALLY interested in this person in the iPad. He kept poking the screen and looking behind it. Peter and J. played peekaboo and then we had one last benchmarking questionnaire to do. Peter sat and played with Tinkertoys behind me while I talked with J., and i have to say that on FaceTime that little window on the screen showing what the front camera sees was very handy for keeping the mischief maker out of trouble. I felt like I really did have eyes on the back of my head.
J. had scored the other assessments, and I think Peter was in the 5%ile for response to language or similar. Sounded really low, and J. said that anything below 7 was considered delayed,  but J. also said that many babies with a hearing loss like Peter's are in the first or second percentile, so being in the fifth was actually pretty good.
Last thing for this session was to take J. on a FaceTime tour of the places Peter hangs out in our house. That way she has an idea about his routines and where they take place, and what materials we have available.  Stanford is on Spring Break this week, so our next session is next week. We have some goals we are working on:

Here are the goals we discussed, based on the CASLLS assessment:

1.  Domain: Receptive Language

Goal: PJ will imitate familiar actions and gestures 4 out of 5 times.

Strategies to work on this goal: Turn taking, modeling, wait time.  (e.g., "More" during mealtimes).

2.  Domain: Social Pragmatics

Goal: PJ will request actions through vocalizations, gestures, signs, or words in 4 out of 5 opportunities.

Strategies: Modeling, hand over hand, wait time. 

3.  Domain: Speech

Goal: PJ will open his mouth or stick out his tongue in imitation of parent in 4 out of 5 trials.

Strategies: Using a mirror, turn taking, wait time, modeling.

Milestone note: standing without support!

I am running a little behind, and have a few things to write about, but I did want to note this awesome milestone! Peter is now frequently standing without any support! He is cruising all over, and has now figured out how to move from one cruising support to another. But he has also stood up and balanced without any handholds. My little guy is going to be a toddler soon :)