Wednesday, February 21, 2018

In the OR (Take II)

The long-awaited surgery happened last week. Logan received his cochlear implant. He was initially scheduled for surgery at the end of November but ended up coming down with a cold. Nothing big but unfortunately, too risky for surgery.

In hindsight, rescheduling the surgery was the best thing that could have happened. I was a nervous wreck. So anxious that I was unable to calm myself at times. Panic attacks, I guess. Everything happens for a reason. After his initial surgery date came and went, I dug deep and found calm. Yes, I was still anxious about the surgery but it seemed to be a more normal vs. the "wake in the night unable to sleep" kind of anxiety. One that any parent would have if their child was going under. As the date approached, I held onto two things; faith that everything would be ok (Dandy, my grandmother, would watch over him) and that he was going to be in the hands of one of the best surgeons for this procedure.

He was given the 2:30pm surgery spot. He was not allowed to eat after midnight the night before. However, he was allowed to have breastmilk up until 10:30am and water up until 11:30am. Thank God for breastmilk! I fed him in the morning, but don't make a ton of milk anymore. I asked my sister-in-law who gave birth to my second niece a few weeks ago (update post needed!) if she would consider pumping a bottle for Logan. She was happy to help so the morning of his surgery, he got to enjoy almost 5oz of fatty newborn breastmilk! It was a lifesaver. He was comfortably satiated up until surgery. My Dad (and Logan's best friend!) came over that morning to help keep him occupied. My Dad also has this incredible ability to get Logan to sleep without issue. He napped for a little over an hour that morning before we woke him up to head to the hospital. After we checked in, we headed upstairs where Logan was given hospital pants and a shirt to put on. At this point, he lost it. Sobbing and reaching for his regular clothes, I did everything that I could to distract him. Having been changed into those clothes for a previous surgery and an MRI, I am convinced that he remembers being put under. Luckily, I was able to distract him with a large car track so that the nurse could check his temperature and O2 levels.




The surgery waiting room was quiet that afternoon, with just a few other kids and parents waiting anxiously. His audiologist, social worker, nurses, anesthesiologist and surgeon all came by to see us. The surgeon marked the left ear/shoulder, as we requested, so that there was no confusion on which side of the head to cut (he was going to do it anyways).

We opted to lightly sedate him ahead of him. He was given a very small dose of pain reliever with a sedative about 30 minutes before surgery time.

15 minutes into the sedation
I changed into what looked like a painter's outfit so that I could take him into the OR. At 2:25pm, we were called. Logan gave Jenn a kiss and a wave as we walked away. He looked up at me and started to laugh at the goofy hair net on my head. As we rounded the corner, the surgeon called to someone to take a look at his adorable next patient. We walked into the brightly lit OR where I was immediately met by his incredibly kind, grandfatherly anesthesiologist. He asked me how I felt being in the OR. I said that I was grateful to be next to him. I lay him down on the bed while the anesthesiologist prepped the tiny mask that smelled strongly of oranges (my choice for Logan). He carefully placed it on Logan's face. Logan started to scream, throwing his head back and forth. He asked that I hold the mask on Logan's face so that he could feel my hands on his cheeks. His wide, terrified, little eyes stared into mine as he squeezed my hand as tightly as he could. I put my face close to his right ear and told him that everything will be ok. It likely only took 10 seconds for him to doze off, but it felt like ages. I kissed him on his forehead and cheeks and walked out of the OR with a nurse. I immediately broke down. The surgeon looked at me and said, "We will take good care of him. Don't worry." I walked out to where Jenn was waiting wiping the tears from my eyes. After a good hug, we checked in with the volunteers in the surgery waiting room and headed downstairs to eat.

Jenn and I sat eating and drinking coffee mostly in silence. Every so often, tears welled up in my eyes as I pictured our little boy on that table. I reminded myself over and over again that he was in the hands of the best.

"OR Nurses Care"

We headed back to the waiting room. I started at the screen stating that Logan was "In the OR" willing it to change to "In Recovery". A high school friend is a doctor at the hospital so she came by to say hello and take our minds off of things. While we were chatting, the surgeon walked in (at the two hour mark). We jumped up and headed into one of the small rooms off of the main waiting room. It went well. A few minor things that were expected. After testing the processor and taking an x-ray to ensure that it is in the correct place, he will be moved to recovery. Three hours after I took him into the OR, we were allowed to see him.

He was in the nurse's arms when we walked in. He was angry about the O2 monitor and the IV. They quickly grabbed me a chair so that I could breastfeed him. His heart rate was high and he seemed unsettled and possibly in pain so he was given a dose of morphine through the IV. He settled within minutes and slept peacefully in my arms. Jenn gathered our things from the car and met us in his room a short while later.  His surgeon came to check on him in PACU (post-anesthesia care unit) and said that he would be by in the morning.





He immediately downed the smoothie that I brought for him and watched a little bit of Elmo on Jenn's phone. We needed to keep him distracted so that he would stop grabbing his IV. After a little while, Jenn headed home to be with the girls for the night. A friend brought me dinner -- delicious! Logan and I settled in for a loooong night of hourly nurse check-ins. He breastfed a lot and spent most of the night sleeping on me. At midnight, he was given one more dose of morphine because it was tough to tell if he was in pain or just unsettled. I managed to get him to sleep in the crib for about two hours, but during that time, he let out several screams so I didn't get any sleep. It was also during that time that what the surgeon said hit me.

Cochlear abnormalities.
Gusher. 

Wait. We weren't told that he had cochlear abnormalities. Googling "gusher in cochlear implant surgery" at 1am is NOT a good move.

I mentally listed my questions in preparation for the next morning's visit by the surgeon.
_________________
You said that he has a cochlear abnormality and had a gusher during surgery. What type of abnormality? Was it a CSF (cerebrospinal fluid) gusher? What are the chances of a fluid leak in the future? .....

Logan has Mondini malformation (IP-II (incomplete partition)) in BOTH ears (this was a shock as we assumed that his right ear was anatomically normal). The term "Mondini dyslasia" was used as an umbrella term for many years and often used incorrectly, so a lot of what's on the internet is incorrect. Both cochleae are abnormal, but at this point, I do not know why he can hear in the right but not the left.

He did not believe that the gusher was CSF. Gushers are common and expected with Mondini malformation, so this was completely routine and not risky for a surgeon of his expertise (despite the scary stuff I read at 1am). He packed the gusher well (with Logan's own tissue) and then waited to ensure it wasn't going to leak again. He felt quite confident that a future leak will not happen, but admitted that there is always a chance.
__________________

Logie was back to normal, so to speak, by the next morning. He wanted to walk around, wanted out of the hospital room. He was still hooked up to the IV for prophylactic antibiotics and fluids. His first smile post-surgery was the result of seeing his sisters' faces on FaceTime.




Taken at 7am the morning after surgery!

They disconnected his IV so that he could watch the trucks from his hospital window.



Logie and his best buddy were reunited that morning. His IV was taken out and he was allowed to get dressed. I was able to take a much-needed coffee break. Thank you, Papa!


Jenn arrived after dropping the girls at school and then we were discharged. We headed home so that Logan and I could get some sleep.

Over the next few days, I started reading. I needed to understand Logan's condition. I wondered why we weren't told about this after his MRI last April. After an email on Wednesday evening to the surgeon's administrator, I received a call at 7:30am on Thursday from the surgeon himself. I wasn't expecting the call and the timing wasn't exactly ideal, but I needed answers. 

Logan has a Mondini malformation in both ears. Mondini malformations include enlarged vestibular aquaducts (EVA). The vestibular aquaducts are the small, bony canals that lead from the inner ear deep into the brain. His are prominent. Due to this, Logan is at risk for losing hearing in his right ear. A bad fall could knock out his hearing in the blink of an eye. MM's also puts him at a higher risk for recurrent meningitis. This can be caused by a number of things, including several genetic disorders. Blood was taken during surgery and is being tested for these genetic disorders. I am trying hard to focus on what we know and not what could be. I am hoping that the results will be given at his post-op appointment so that I can cross that off my worry list. 

Up until last week, Logan's cochlear implant was a luxury for us. We wavered on the decision for many months assuming that his right ear had typical hearing and normal anatomy. Had we known last April that he is at risk for losing hearing in his right ear too, it would have been a no-brainer. Get him a CI. I do believe that it was an honest oversight. Their focus is on determining CI candidacy. If he has an auditory nerve, he is a candidate. His surgeon is also so good at what he does that this was a completely routine procedure for him. 

I have many more questions to be asked at his post-op appointment. The questions will keep coming as I learn more. 

In the meantime, I'm trying to stay focused on Logan's physical and emotional healing from the surgery. The former has be quick and easy. Emotionally, he still seems to have some struggles. He is quite attached to me and has been sleeping terribly. 

On another note, I did a homeopathic protocol with him before the surgery to help his tiny body manage the post-anesthesia symptoms. Not only did he bounce back quickly, his swelling was minimal. 5 pellets of each were dissolved in a small amount of water. I gave them to him the night before, the morning of and at the "water cut off" (11:30am) and immediately after surgery. I continued arnica for five days (once per day) post-surgery. Homeopathics should be given away from food and drink.

The four remedies in purple bottles are good overall remedy for surgery. The top remedy was given because his surgery involved nerves.



In a few weeks, his implant will be activated. Since he can already hear, we aren't anticipating a big reaction. Many kids cry and some have no reaction at all. Stay tuned!

Monday, October 2, 2017

Decision Made.

It's been far too long. Only appropriate that I follow my last post was about the decision as to whether we should get Logan a cochlear implant with this...decision made.

Logan is getting a cochlear implant. It took us 15 months to make the decision. Surgery is scheduled for November.

We met with the surgeon for the pre-op appointment last week. When he asked if I had questions, I broke down. The tears started to fall. I am anxious, I told him. Jokingly, he said that he won't charge us for the $50,000 device that Logan is going to get, but for Kleenex, I'll have to pay. (We actually don't pay a cent for all of this.) He reminded me that some anxiety is normal. I know this. He stared me in the eyes and said, "I'm not anxious about this at all." That made me smile. He explained that this is a study and as a result, surgery must be done perfectly with minimal risk. He performs four cochlear implant surgeries per week and has been doing them for twenty years. It's going to be ok and I'm just trying to breathe.

When we received Logan's diagnosis, I immediately went into research mode. I was determined to learn as much as I could and speak to as many people as possible so that we could make the best choice for our child. I don't think I truly let myself grieve his hearing loss. I just wanted to fix it, knowing full well that hearing loss can't truly be fixed. After 15 months of it being a maybe, it became a definite. A definite with a date for a life-changing surgery on my baby boy's brain. It completely overwhelms me. The tears fall often and without warning. Thoughts and worries fly through my head in the middle of the night. I know in my heart that we've made the right decision but that doesn't make the next few months any easier. It's all coming out now.

So, why? How? What was it that helped us make our decision? Right after Logan's diagnosis, I was in touch with a mom of a boy who is about four now. He is unilaterally deaf, although I don't think his is quite as severe as Logan's. He does not have a cochlear implant, but his mom and I chatted about hearing loss and its challenges. We've been in touch and I recently wrote her to let her know that we are going ahead with a CI. She asked if I would mind sharing our decision making process. This is what I wrote:

We both walked out of our first appointments at Sick Kids saying 'no' to a cochlear implant. After a couple weeks of processing it all, I realized that I needed to learn more so that, in the future, I could explain to Logan why we made the decision that we did. 

I went to the Bob Rumball Centre (for the Deaf) and met individuals in the deaf community. I requested to speak to parents who have a child with SSD (single-sided deafness) and went ahead with a CI at Sick Kids. I joined Facebook groups from all over the world -- parents of children with CIs, parents of children with SSD, adults with SSD....I posed questions to these groups and scoured past posts. It was here that I started warming up to the idea of a CI for Logan. 

We all seem to know at least one adult who is deaf or partially deaf in one ear. I started speaking to those people too. They've lived happy and productive lives for sure, but it has not been without its challenges. One of my brother's best friends is completely deaf in one ear, like Logan. We spoke extensively. He explained the challenges of going to restaurants, work events, riding in a car, the fatigue etc. He is managing but it can be tiring and frustrating.This was a story that I heard over and over again from individuals with SSD. In adulthood, he had an MRI to see if he is a candidate for a CI. Sadly, he is not. He said that if this had been available to him as a baby, he would have wanted his parents to go ahead with it. Most of the adults I spoke with said that the challenges of SSD started presenting themselves once the children started school. This was a big one for me, as Logan's speech and language is currently on par or better than his peers. For the most part, he seems like any other child who has bilateral hearing. However, I have noticed his challenges in localizing sound. 

I've spoken with three parents of toddlers who received cochlear implants as part of this study. Two of them are nearly 2 years post activation. One of them was activated in January. All three parents said, without a doubt, that it was the best decision they could have made for their child. Testing is showing that their child's deaf ear is now hearing within "normal" ranges. This happened in less than 6 months post activation. 

In the future, he can choose to take the device off whenever he wants. Even though we are making this life-changing decision for him, we are ultimately giving him the choice. That was the only thing that the two of us could agree on for months! 

I spoke to the mom of a 22-month old boy, who received his cochlear implant earlier this year. The conversation with her couldn't have come at a more perfect time. While my anxiety and worries are still there, she has given me an idea of what to expect. It feels all-consuming right now, but she assured me that it is just a regular part of their daily routine now. She was me a year ago, breaking down in front of the surgeon. She gets it and that's more comforting than anything else. Within months of her son's surgery, he was hearing within a normal range in his CI ear. That is truly amazing to me. We are meeting up with this little boy and his family very soon.

We were born with two ears. We are meant to hear with two ears.


Logan and Finn

With his beloved "ba-pa"

On their first day of grade one

A trip to the zoo with their cousin

Hiking in Portugal. General update post to come :)

Friday, April 28, 2017

Decision?

Decision time?

We waited for nearly a year (from finding out about his UHL*) to find out whether Logan would be a candidate for a cochlear implant. There were many appointments and tests. Countless hours spent in sound proof audiology rooms. It was the MRI that would determine whether we would have options to help his hearing loss. If the MRI showed that he had some cochlear nerve in his left ear, he would be a candidate. If not, he would learn to adapt to hearing 
*unilateral hearing loss

A few weeks ago, Logan underwent an MRI under general anesthetic. I was anxious, but I wasn't the wreck that I was on surgery day. I set my alarm for 3:30am to breastfeed. 4am was the breast milk cut off for his 8am ultrasound. I woke early to force myself to eat breakfast. Logan woke around 6am. We arrived at the hospital for 7am and immediately changed him into his tiny hospital gown. We walked around, played with toys and sang songs. At 7:30, the nurse came in to ask a few questions, take his temperature and check his vitals. I met the radiology tech and the anesthesiologist. Logan quickly won the hearts of all of the nurses with his smiles and waves. 





At 8am on the nose, I lay my sweet boy on the table and told him that I loved him while the anesthesiologist held the mask over his tiny face. Logan was screaming, with a terrified look in his eyes. I stroked his head and I told him that everything would be ok. Within 10 seconds or so, his eyes started to flutter. A few more seconds passed and he went limp. They promptly booted me out (as they told me they would), so that they could insert the IV and wheel him into the MRI room. They prepared me for what it would look like as he was put to sleep. They even offered to take him from me if I thought that it would be too difficult to watch. Not a chance. It wasn't about me. It was about Logan. Of course it was difficult, but I wanted my baby to see my face and hear my voice as he was put to sleep. 

It took longer than expected. But man, that place is awesome. If your child needs to be in the hospital, Sick Kids is the place. The nurse came out right at the 45 minute mark to tell me that he was doing great and breathing on his own, but there was still some imaging to do. I had been told that it would take about 60 minutes. I was updated when the test was complete (it took nearly 1.5 hours) by the radiology tech who gave me a big thumbs up. Logan was in recovery and I was allowed to go in as soon as he started to wake. It took another half hour at least before he woke.

The kid is a force. When I went into recovery, he was in the nurse's arms. He woke and immediately tried to climb out of the crib! I breastfed him, hung out in recovery for another 30 minutes and was then given the go ahead to head home. 

Right after the test began, I went to grab some tea. As I sat in the hospital's atrium, I looked up at this poster:



It's massive. Obviously. I thought about how lucky I am. It's incredibly nerve-wracking to see my baby put to sleep for an MRI, but I got to take him home a few hours later. My healthy baby boy and I went about our day. After sitting in the atrium for a little while, I went back to the MRI waiting room. A very sick young child was wheeled in, attached to multiple machines, with two exhausted and worried parents following shortly behind. Have you seen Sick Kids' Mother's Day ad?

Last week, I received the call that Logan is a candidate for a cochlear implant. We have options and for that I'm grateful. Jenn and I now have a big decision to make. I'll leave it at that for now :)