Wednesday, June 25, 2014

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!



Thursday, June 19, 2014

We..are...finally...here....

I can't help but feel like I am grieving Lil Bill's hearing.  This past, everything we did, I couldn't help but think, 'oh this is one of the last time's Lil Bill will hear this.'  Don't get me wrong, I know the implants will allow him to hear.  I guess I have this undeniable fear that he hears better than we think and the implants are not going to compare, or the implants are not going to work.

It is interesting to me my reaction when we heard the news that Lil Bill had auditory neuropathy.  We were told that hearing aids typically do not help with auditory neuropathy and cochlear implants do.  Seconds after hearing that I thought 'ok lets get the implants tomorrow!'  I had no fear, I just wanted my baby to hear.  Of course nothing is that simple.  We had to go through months of trial with the hearing aids, we then had to wait and see if Lil Bill would start developing any language to see how severe his auditory neuropathy is.  We had to go through several scans and tests.  This fear that I have was not present during any of that.  Funny how that happens.

I cannot believe the day is tomorrow.  I have so many emotions.  I am scared of course, I would rather my baby didn't have to go through surgery.  I am excited because of what the cochlear implants could do for him.  Nervous because well its surgery, and we will be adopting a whole new way of life into our lives.  I am very emotional and could cry.  All the time and effort that Lil Bill, Billy, and myself, and even grandparents on both sides put into getting to this point and its finally hear.  All the appointments we all went to and babysitting and transportation the grandparents helped out with, we all made it happen.  And other family and friends who have offered there support has been irreplaceable.

 While I do feel like I am grieving the life that has happened BC (before cochlear implants haha) I feel equally as excited for the life that has yet to happen.

I just really don't know what else to say.  The day we have been waiting for is finally hear.  I just can't find the right words to describe my feelings.  Please send sweet prayers and positive vibes our way tomorrow.  We have to have Lil Bill at the hospital at 6:30 am.  Surgery will take several hours and then we are suppose to only be in the hospital one night for observations.  Hopefully everything will go smoothly and we will bring Lil Bill home Saturday to finish the rest of his recovery in comfortable surroundings!

Thursday, June 12, 2014

The road to getting here..

As I sit here while Lil Bill is taking his late night nap, a nap that I secretly love because he sleeps more quiet than he does at night and its sometimes the only time I get to myself throughout the day.  I sit here, anxious and nervous for whats to come.

This time next week I know the anxiety feelings will be amplified but I can't help but feel them now.  Decisions I was confident about I am now second guessing, I am becoming worried, wondering if this is the right thing.  Lil Bill's cochlear implant surgery is a week from tomorrow and I am thinking entirely too much about the actual procedure and the potential outcomes.  Last night Billy and I were watching House, a show we love and never ever get sick of, and we watched one of the doctors on the team drill into a patient's skull.  Billy then said to me, 'I can't believe they are going to be drilling into Lil Bill's skull.'  I can't believe it either, honestly I never thought about it, I still can't bring myself to think about it.  I called one of the surgeon's physician assistant today and asked her several questions about the procedure.  It was like, I was not present during our previous visits with both surgeons.  But I was.  How could I elect for an optional surgery that requires two mad men, or surgeons should I say, drill through my little boy's skull.  How could I have not processed all of this information?

This man's been busy!


The road to get where we are now, to one week away from Lil Bill getting bilateral cochlear implants has been a long and mentally draining road.  We met with so many people.  We met with both surgeons, at two different appointments.  Contrary to what I just stated, I do like them and do not believe them to be mad men.

We met with the speech therapist who will be working with Lil Bill and us twice a week for at least the next year to help Lil Bill learn to listen with his new implants.  She will be doing AV therapy (audio-visual) with us throughout that time.

We met with a social worker who made sure we did not need anything to help us keep our commitment to the year long therapy.  We met with the cochlear implant coordinator to make sure we were educated and helped guide us through everything.

We met a new audiologist who is a cochlear implant audiologist who accessed Lil Bill and will be the one handling his mapping.  Mapping refers to channeling the cochlear implant and working with its settings.

We met with a genetic doctor to rule out serious genetic disorders that could of caused this type of hearing disorder that Lil Bill has.  That doctor was able to rule out those specific genetic disorders.  However she was not able to rule out all genetic disorders.  So we went through with genetic testing.

The genetics doctor thinks its a possibility Lil Bill has Kabuki syndrome since he is showing at least five traits of it.  Its a rare genetic disorder and can account for some of his medical issues and developmental struggles.  All of Lil Bill's medical issues and developmental struggles can be blamed on him being born 17 weeks early, which in turn left him with brain bleeds and brain damage which left hi with cerebral palsy among other diagnoses.  All of his doctors believe this to be true.  This genetics doctor is bringing a different perspective.  Maybe he also has a genetic disorder.  I am trying not to think too much about it, he likely does not have it.  If he does, I can only imagine the stress of trying to figure out what is from Kabuki and what is not.  I can't find the write word to express how I feel about Lil Bill being almost 2 years old and he is still a puzzle trying to be put together.  Anyhow we are awaiting the test results.

Lil Bill during study. Was taped down to table but wanted to play most of the hour long test!


In the midst of all this, we still had our usual GI appointments, which lead to a gastric bypass emptying scan.  The scan showed that Lil Bill's acid reflux is more severe than we thought.  It showed that his sphincter in his esophagus does not close, it remains open.  So his acid reflux is constant, even if it does not actual come all the way up.  The GI doctor thinks this may be why Lil Bill screams in his sleep all night.  Three new meds were added last week, keep your fingers crossed we all get a good night sleep soon!

Lil Bill in his stander, working them legs!

Our routine neurology appointments called for and EEG for concern over seizures.  Well this brought unusually good news for Lil Bill, NO SEIZURES! Gosh I just love when his test results come back with the word normal in them.  Our neurologist thinks Lil Bill's legs have made  lot of progress.  He said if his legs can change the way they have, he is hopeful that his upper body may be able to too.  He suggested treatments like bot ox, which is often used for spastic cp, which Lil Bill has.  We are interested in this but it is not our primary concern at the moment.

Our pulmonary appointments haven't been horrible.  Lil Bill still has had another run with pneumonia, which he won woo hooo.  Still on the same meds for his lungs, still have the pulse ox, c pap, oxygen tanks, nebulizer, and now have added a cough assist machine to the mix.  Lil Bill is not a huge fun, but it works amazingly!!I

 In the midst of all that, Lil Bill has also started working with an organization called deaf/blind.  Lil Bill was working with an organization that worked with the deaf and hard of hearing.  However, there are vision concerns from some people who work with him.  The concern comes from how well he is processing what he sees from his eyes to his brain, this processing disorder is called CVI (cortical vision impairment). Lil Bill's new teacher gave us a good way of explaining CVI.  It is kind of like looking at a Where's Waldo book when looking at different things or people throughout your day.  So we had an IFSP meeting and transferred services to statewide services for the deaf/blind.  So far his new teacher does not think he has a severe case of it.  Her and some of his therapists are trying to sort out if he has CVI or if this is related to his motor skills.  Again, that puzzle I am talking about.

All of this lead us to this point.  A week out from the cochlear implant surgery.  So I did not remember a few details about the surgery, justifiable you think?

And now, where I a now, which is second guessing.  This surgery is an optional surgery.  Billy and I believe that it will enhance Lil Bill's life.  So do all the professionals we have met with.  But what if it doesn't.  Lil Bill can hear now; he hears static and doesn't hear clearly but he can hear.  These implants will take away all of that.  What if they don't work right?  What if Lil Bill's auditory neuropathy is not as severe as we think and he never really needed them? I wish there were some way to know.  I wish I could ask him and let him decide.  It is his hearing and it is his body.  As a mother I suppose it is natural to worry if I a making the right choices for my son.  I know it is my job to make these decisions, well mine and Billy's.  And together I feel as though we do a good job researching information, meeting with the doctors and therapists, and talking to families' who have been where we are and then taking all that information to make the best choice.

It still doesn't make it suck any less.  Lil Bill is so happy.  I do not want that happiness to go away because of a bad choice we made.  Sometimes I wish the important decisions that were put on us, were not this big.  Sometimes I wish this was a little easier.  But this is our life and our situation could be a lot worse.  As I said Lil Bill is so happy.  All the time, he truly is.  If anyone has a reason to be angry or upset it is him and he just wants to have a good time all the time.  That is a huge blessing itself!  I think we will be OK.  The anticipation is always the worst part!  Our new normal is going to be beautiful, I really do just know it!

Lil Bill in his new wheelchair/stroller, just living it up.


I am so grateful that we are so close to such a great children's hospital with such a great cochlear implant team. Lil Bill could not be in better hands and I am so glad they are on this journey with us.