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.

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!