Happy cochlear implant day!

First, I am entirely to tired to spell check or proof read..FYI!!

I thought I would update in some detail about the cochlear implant surgery.  Lil Bill got the surgery this past Friday!  We are patiently waiting for them to turn them on.  July 14th they will do an initial stimulation.  I cannot wait to see his response.  Some videos I have seen of babies and toddlers hearing for the first time have such great responses.  By great I mean laughing and smiling so big or screaming and crying.  I think Lil Bill may be closer to the smiling than crying but if not it wouldn't be the first time he has surprised me!

So the night before surgery I could not sleep at all.  I was filled with so many emotions.  I was scared, anxious, excited, nervous, sick to my stomach, confident, just to name a few.  I really do not know how to put it into words exactly how I felt.  I mean, imagine, how you would feel if your sweet child was going to be getting a surgery that will allow him or her to hear clearly for the first time? Who am I kidding, I never could of imagined what half the shit in life that I have ever been through would feel like until I really went through it right!?

We got up for the day around 5 am.  Billy and I got ready while Lil Bill snoozed.  For those of you who know us, know we enjoy to make Lil Bill's doctors and nurses laugh or smile.  His first Halloween in the NICU we dressed him up in a Build A Bear Incredible Hulk Outfit.  His first Christmas in the NICU we put him in a onzie that said a gift to all the ladies (Thanks Mere!) and put him in a wrapped Christmas Box.  We thought it would be only appropriate to dress him in doctor scrubs for the day of his big day!!  Of course everyone got a kick out of it!

After getting to the hospital, I just wanted time to drag on.  Lil Bill was so happy, loving all the attention everyone was giving him and just playing and laughing.  They ended up giving him a sedative before they took him to the OR to give him general anesthesia and do the surgery to help keep him calm.   After a few minutes he looked pretty high, for lack of a better time, and began laughing even more.  I couldn't help but think, my poor baby doesn't know whats coming for him.  After we said our 'goodbyes' and they rolled his bed out he looked back at us, with this look like, 'what, you guys aren't coming.' It broke my heart.

The surgery ended up taking 5 hours.  It was probably around six hours before we saw him though.  For all the time I spent on my phone and tablet I can not tell you one thing I accomplished.  I kept walking around aimlessly.  Billy's mom and my parents were there waiting with us. 

Two surgeons performed the surgery on Lil Bill.  About 4 hours in one of the surgeons came out.  After they put the cochlear implant in they test it to make sure it works.  The doctor was explaining to us that a couple of the electrodes on his implant were not working properly.  They keep back ups in the OR with them say they were able to take it back out and put a new one in.  I asked him how often this happens and he said 'In his 20 years of doing this neither of them have ever seen this happen'  Figures Bill would be the first one! I am very grateful they continued to keep testing them even though they had never had one that never worked!  Here is a picture of the actual implant.  Next to the implant is a nickel.  Honestly I had pictured it much smaller before I saw it!  There are three different companies that you can get cochlear implants from.  We chose the Nucleus 6 from Cochlear, which is the picture below.  Anyhow they put the new implant it, tested it, and it worked fine!

When they finally told us we could see Lil Bill we ran back.  He was still half out of it.  He had a big old bandage on his head.  The nurse, Billy and I, decided he looked like Princess Laya, poor him! Overnight when a different nurse re-wrapped it several times her and I came up with several other names for the turban I mean bandage as well!  Here is a picture of the bandage.  This is of course much later in the day.  My happy boy doesn't let a little pain bring him down.

When we were admitted for our overnight, as soon as we get up there Lil Bill started crying because we layed him down to change his diaper (we are just awful parents).  When he cried he held his breath and turn colors and dropped his stats to the low 50s.  See this doesn't phase Billy and I anymore.  We have seen him do this countless times in the hospital or at home, we have intervened countless times, watched the staff intervene countless times, and he always brings himself back up.  Well, every time this happens in the hospital, the staff doesn't share our calmness, naturally of course.  So right away about 10-15 people came running into our room.  Quickly asking our questions, looking at him, telling others what they needed to use on him, yanno, the works.  Every time this happens I feel like I have to explain my calmness.  Saying, he does this all the, i think he will be ok, he was just upset, on and on and on.  They ended up deep suctioning help and blood came up.

Immediately I flashed back to the early days in the NICU, when they deep suctioned him and blood came up and they were really worried about him, like it really didn't look good for him.  The respiratory therapist, doctors, and nurses did not seem to share my concerns to much.  They said it was probably because of the breathing tube or the deep suction.  For those who do not know when they deep suction they go up your nose and all the way down your throat.  Crazy how quickly I can flash back to experiences with Lil Bill.  I have to ground myself and remind myself that we are in different times and very different circumstances

In the midst of all this happening, Lil Bill was laying on the bed screaming in pain.  When he screams he often ads an M to the front of this.  So when he was screaming it sounded like he was screaming 'MAAAAAAMAAAA'.  One of the several people in the room with us said aw hes screaming Mama.  I don't think he meant to maybe he did, but my heart was breaking.  For a couple seconds I actually regretted doing the surgery.

Everything became ok as I assumed it would.  Throughout the night in the hospital, one of the times Lil Bill fussed and I went over there I saw him laying in a big circle of blood on his sheet.  Right away I thought it was the incisions.  Seconds later I saw it was his nose.  I called for the nurse right away who called for the doctor.  Internally I panicked.  Every time a patient in the show House has a nosebleed it is never good!  Well what I wish someone warned me about is that nose bleeds are completely normal and somewhat expected after surgery involving the ear.  Keep that in mind!

So Lil Bill seemed to be doing ok the next morning.  We were discharged and able to go home.  I was so relieved.  Whenever we go into the hospital I get his fear that they are going to keep us longer than planned.  We came home and everything was going smoothly.  Lil Bill was in pain but we were managing it.  Until the next morning.

Lil Bill started vomiting everywhere, coughing uncontrollably.  Something just did not seem right.  This continued to the next day and the cough got worse.  I called the ENT office, since they did the surgery.  I did not think it was surgery related but I thought better to be safe than sorry.  They told us to come in the day we called  and they checked him out.  On the way there, listening to this cough, all I could think was this sounds like the cough he has when he gets pneumonia.  The ENT doctor checked him and ruled out anything surgery related.  That relieved me, and they said his incisions look good, which also relieved me.  Here is what his incisions currently look like.

ENT did want us to see our primary care doctor or pulmonologist before we left the hospital, because they are both very familiar with Lil Bill and how he sounds.  We went down to our primary care first because our pulmonologist was not on that day and I wanted him to get seen by someone who knew what he sounded like at base line.  Our primary care doctor was not on, but lucky for us the three doctors who were on were very familiar with Lil Bill.  Everyone is the office there is familiar with Lil Bill.  Unfortunately its because we have been there so much this past year.  They knew it was him coming by his horrible cough before we even got there one lady there said.

Our primary care office is so great to us and I am so thankful for that.  They got us in to be seen.  All of the doctors on listened to him and evaluated him.  One of the doctors is a resident.  When Lil Bill was in the NICU she was doing her residency there so she knew him and treated him there. She now does her residency at the hospital.  We have seen her in primary care, in the ER, while we were impatient, and now this time.  I really did luck out on getting seen by a doctor who was familiar with Lil Bill.

Well my fears were confirmed, it's pneumonia.  It could have been brewing prior to the surgery and Lil Bill was showing no symptoms of it.  Or when they were intubating him for the surgery it is possible that the tube knocked some blood of mucus into his lungs and he got it that way.  Either way he has it and it sucks.  My poor baby it is the 4th time in less than a year, and days after surgery, my heart has been broken watching him.  This is definitely his worse case yet.  Billy and I are also getting the energy sucked out of us.  While I know my baby is going through it, it is exhausting for all of us.

Lil Bill has been coughing non stop, literally.  Yesterday consisted of a 24 hour coughing fit.  We have a cough assist to use at home with him when he is sick.  A cough assist is medical equipment machine that blows air pressure into him and than sucks it all out hard and quick.  It is great for getting up the mucus.  But since he just got the surgery, ENT advised us not to use it for a couple weeks.  Nothing is helping him, none of the three breathing treatments, not vics vapor, not a vics humidifier, not machine suctioner.  It is so hard to see him like this, this is definitely his worst pneumonia spell.  He is on a very strong antibiotic and I hope it makes him better soon.  We have oxygen at home that we have been using with him.  He finally got a solid 5 hours of sleep last night with it.  I am very grateful with have the oxygen at home, otherwise we probably would have been admitted to the hospital again by now.

Today he does seem better than yesterday, still in bad shape though.  He has been crying uncontrollably all day, doesn't matter what you do.  I gave him some of what I am calling 'special Tylenol' aka Tylenol with codeine because the reg Tylenol was not stopping him for screaming at all and we still have the ok to use it as needed from the surgery.  I think his entire body has to hurt from coughing so bad all day yesterday.  I really thought he was going to end up with a broken rib.  But he didn't.  So I think we are now turning up hill, knock on wood, he has eaten much better and more today, is not coughing nonstop, just crying.  But since I gave him the special Tylenol he has calmed down and is taking a nice long nap.

Ok so YAY you made it to the end of this long post!  This is our story of our cochlear implant surgery.  A surgery that is going to change Lil Bill's life!  So July 14th is the day to look forward to folks!! I cannot wait!!!

To end this post on a happy note, he is another picture of Lil Bill with his daddy, Billy.  This was Lil Bill's first 'real' hair cut.  His daddy cut it two nights before surgery.  We thought they were going to shave his hair a bit.  Billy wanted to give him a mu hawk cause of that.  I am glad we did not because they didn't shave any of his hair.  But he still looks so handsome with his hair cute! Love my Bills!