The purpose of this particular post is mainly to give other parents out there who are going to have their child implanted a look at our experience. I think from the 4 bazillion Facebook/Twitter updates Dan & I posted throughout the weekend, our family and friends have a pretty good idea of the events already, but this will hopefully give people who are in a similar situation as we were an idea of what to expect.
Disclaimer: this is our personal experience. We are at Boston Children’s Hospital, our son is 10 months old, and structurally his ear is 100% normal. I state this because any one of those details, and probably hundreds more, could make this experience very different for others. Here, we share our story to give you a rough idea, but please keep in mind that every surgery, like every kid, can be different. (I leave out the names of all our doctors on this blog, but email/message me if you would like our surgeon’s name because he is AMAZING!).
The week, and especially few days, leading up to surgery day was rough. The stress and worry weighed very heavily on our shoulders. As confident as we were in our decision, it was still a hard pill to swallow that we were choosing to have our child have his skull drilled into and his brain messed with- that is putting it harshly, but it is how we felt.
This is probably the reason we decided to pack what seemed like enough to travel across Europe for 3 months. Ha! One word of advice: don’t over-pack! Especially for the baby. They had EVERYTHING we needed there (formula, diapers, wipes, etc.). He really didn’t need any clothes except the PJs he went in wearing since he was in a Johnny the whole time. As for you as parents, you are not going to care how you look in the morning, believe me.
So, we set out at about 6:30am (had to be at check-in at 8am for a 9:30am surgery). Finn couldn’t eat past midnight the night before and no formula since 4am, and clear liquids stopped at 7am. I was worried he’d start getting really cranky from being hungry, but he held out pretty well. From 8a.m. to about 9:45am (running a little late) we met with almost every doctor and nurse who would be part of Finn’s surgery team. Each was patient and informative and asked us if we had any questions. Once again, we felt less like we were in a hospital with strangers and more like we were with close friends chatting about our son.
The surgeon estimated about 6 to 6.5 hours for the total surgery, which got pushed back to about 10am. When the time came to say goodbye; that was the moment that was the hardest for me. Dan and I had chosen for him to be the one to take Finn in the operating room while Finn underwent anesthesia. I was left alone in the pre-op area and had my own private break down. There is nothing that can prepare you for that moment. Dan had a different kind of hardship on his side going into the operating room. He suggests for parents who do go in the room, have your good-byes ready because you walk in, you see all of the menacing looking instruments they’re about to use on your child, then they give the anesthesia and he said it just felt unnatural to watch Finn’s eyes glass-over and him fall asleep like that, then they rush you right out.
We were taken down to the waiting area by a nurse and introduced to the liaison nurses. These women were our connection to what was happening with Finn throughout the whole surgery. Every hour or so, they would walk down to the waiting area to give updates on his progress, but they also took our cell phone numbers just in case we wanted to step out and get some air or grab a bite to eat.
A BIG FYI! If you do step out for a few minutes and you get a call from one of these nurses, don’t immediately start having a panic attack in the middle of a food court thinking that something terrible has happened and begin signaling to your husband to start running back to the hospital right this moment! In this “hypothetical” situation, they could simply need to double check some information on your child’s chart. I mention this for no particular reason ; )
Anyway, it’s going to be a long day. Everyone knows that. It is a day filled with tension and fatigue. I was lucky enough to find a couch to crash on for a little bit and the nurses took pity on me and found me a super comfy pillow and blanket. I repaid that kindness by proceeding to fall into some sort of coma-like sleep where indecencies like snoring and drooling apparently had no limit (this is according to Dan, I think he may be exaggerating). We also had our laptops, Kindle, smart phones and used distraction as our defense.
Well the check-ins kept coming, we kept people in the loop via what must have become a tiring amount of Facebook updates for some people, and we waited and waited. Finally, when all the other families had come and gone, we saw our surgeon walking down the hall!
The surgery had lasted about 8.5 hours. 2 hours longer than scheduled, but the reassuring smile on the surgeon’s face (not to mention the updates from the nurses) put us at ease. Dr. L had said that Finn was doing great, the surgery had gone off without a hitch and he would be in recovery shortly. He had said that his canals were really tiny (not surprising given his age) so he had just taken his time and gone very slowly with the procedure, hence the extended time. We were happy to hear it went well and felt happy that he had taken his time. Not the sort of thing you want people trying to rush at!
With our surgeon was an Audiologist. We had never met her before, but her role was to test Finn’s auditory nerves. This was a huge moment. Obviously our number one concern was that Finn got through the surgery healthily with no complications. The underlying concern, as small as the percentage might be, is that sometimes Cochlear Implants do not work. You can go through every pre-op step perfectly, the operation goes smoothly and for one reason or another, it doesn’t work. Now, for Finn, this was a small percentage risk and the benefits FAR outweighed that risk. But that moment, waiting to make sure you didn’t just put your child and yourselves through something this major for nothing, was intense. She started out by saying she ran two tests. The first test she said went great, then she hesitated (realistically, she was probably just catching her breath, but Dan and I discussed later that this slight, maybe imaginary, hesitation had us both holding our breath and bracing ourselves for her to say that something went wrong with the second test). The second test was to test how the auditory nerves were firing with the devices implanted. Finn’s auditory nerves had basically never fired. Every previous test had given no response. The doctor’s quote is a sentence that will be forever burned in my memory:
“Both auditory nerves tested ROBUSTLY!”.
What a word. Much like the word “profound” will forever be connected to hearing Finn’s original diagnosis of Profoundly Deaf, the word “ROBUST” (as I see it in my head, it is always in all-caps) will always be linked to the moment my baby boy “heard” for the first time. He might’ve still been under anesthesia and it might have just been some high-techy sound wave, but on February 27th, 2014, Finnegan Daniel Moriarty’s auditory nerve fired- ROBUSTLY- and his brain heard a sound. The high of that moment is hard to retell in words.
The high, however was quickly countered with the nervous expectation of what Finn would look like when we saw him in recovery. Both Dan and I had done so much research (Dan actually watched an entire CI surgery online- and people say I’m the crazy one in our relationship!) and we were told to expect a lot of swelling, bruising, and in general, a very banged-up looking little baby. I remember grabbing Dan’s hand and he just looked at me and said, “brace yourself.” Well, I don’t know if we had psyched ourselves out with too many Google searches or if Finn’s body just took the surgery well, but I was amazed at how not-too-terrible he looked.
The thing we weren’t expecting was the elevated heart rate. I guess it is naive to think once the surgery is over, you are in the clear, especially given then he is only 10 months old and was under anesthesia for over 8 hours, but it was difficult to have already taken that breath of relief only to find out that it may have been taken prematurely. Finn was never in any “danger zone” as they called it, but his heart rate was at 200+ and his blood pressure elevated for about 2 hours. They maxed him out on morphine and the nurses called in a couple of other doctors, none of whom seemed overly concerned (which was a good thing), but all of them were keeping a close eye on him. Luckily, the night nurse came in at some point to meet Finn and she told us and the other nurses that she had had a 14 month old a few weeks before, same surgery for a similar length of time, and his HR had been elevated all night. This seemed to calm everyone down as it set a precedent and so this wasn’t a completely abnormal reaction. Shortly after that, our worries were alleviated any way because his stats fell back to normal and we even had him smiling and laughing!
He was restricted from eating still because he had vomited right upon waking up and you could tell he was getting grouchy from not eating. They were limiting him to sugar water and he was starting to push it away angrily when the night nurse came in and started signing to him in ASL- so cool! (she had learned some signs when her kids were babies). Finn must have taken that as an invitation to speak his mind because he VERY clearly signed “EAT” right to her! He was so adamant, the nurse looked at me & said, “Ok, maybe we can try half-strength formula.” hahaha. Go Finn! Already learning to advocate for himself!
When he was finally settled down for the night, Dan had to leave- they gave him the option to stay, but they are only allowed to provide 1 parent seat/bed thingy and they conveniently have a house down the street where parents can stay for very low cost. I think it is meant for more long-term parents, but there was no way either one of us was going to be 45 minutes away from Finn that night and they were nice enough to offer it to us so we didn’t have to spend money on a hotel room.
All night long the nurses perfectly balanced checking-in on Finn (& me too because they are so sweet) with letting us get rest.
In the morning, the doctors came to check up on his healing and by 10am they were removing the pressure bandages.
Once again, we were pleasantly surprised with how Finn looked. I was expecting huge, thick lines up the sides of his head, but they did the sutures internally so it was fairly clean. And not only do they dissolve on their own, but it is also a much fainter scar. They say it will be unnoticeable when his hair grows in.
They sent us home around noon that day (unbelievable that it was only about 18 hours after an 8-hour surgery) with antibiotics and a regime for alternating Tylenol & Motrin every 3 hours- very weird for people who really aren’t big on giving medication when we can avoid it to be giving so many meds. They didn’t give us any pain meds to take home because he hadn’t needed any since the night before, but they said we could call them any time if he seemed to need them.
The return home took an unexpected turn when we found out that poor Kayla (who is very rarely sick and has been in perfect health all winter) had been throwing up all night and had a 102 temperature. I felt so badly for her because this had been a pretty huge event for her as well and her stress was compounded by this bug. It was also very worrying to us to have Finn exposed to whatever she had while he was recovering, but we did our best to keep him protected.
The first 24 hours home was pretty rough. Dan was beyond his limits of exhaustion, Kayla was still really sick, I came down with a head cold and in my sleep-deprived haze took a tumble down a flight of stairs (“Shoulda held the railing like you are always yelling at me, mom”- says Kayla as I lay at the bottom landing). Finn didn’t sleep more than an hour at a time, and usually it was more like 20 minute cat naps. By midnight Saturday, we were at our breaking point. We were giving it until morning and then we were calling in for pain meds for him and I was trying to decide if it was worth an E.R. trip for Kayla since her fever was still high whenever the medicine wore off.
Luckily, Sunday was a turning point. Finn finally started sleeping, Kayla’s fever broke, and Dan and I got some rest. We even got Finn weaned off of the Tylenol/Motrin by Sunday night. Monday was continued improvement all around.
Today was Finn’s post-op appointment with the surgeon. Dr. L said he looked great. Oh, this is important for post-CI parents out there. He was adamant that ANY ear issues in the future be treated aggressively. A lot of pediatricians hold off on treating ear infections with antibiotics these days because it can so often be viral and the meds wouldn’t do any good. But Dr. L said kids with CIs need to have every ear infection symptom treated immediately and aggressively with heavy duty antibiotics. He even said that if the pediatrician hesitated, he would call them or he’d just prescribe the meds for us right away. Finn’s ears will be checked on such a regular basis, I’m not too worried, but it is good information to have.
Today Finn seems to have taken a slight step back- he had a low, low grade fever and has been kind of cranky and VERY sleepy all day. We did end up putting him back on Motrin which seems to be helping (maybe we weaned him off too soon?), but between the viruses floating around here, some new teeth coming in, and being only 5 days post-op, we’re not overly worried that the kid is tired!
Tomorrow is my first day back to work, Kayla’s first day back to school, and the first day that seems like we will be getting back to “normal” (always a relative term with my family). Even though it has been an absolutely emotionally and physically depleting few days, in a way it has been a very rewarding time to be able to be with just my little family (mainly because we quarantined ourselves ha) and do lots of cuddling and coddling. We have all been superstars in our own way and I know that our strength comes from the strength we give each other and we get from our friends and family.
Now we get to look forward (not worry about) the next few days because it is TEN DAYS UNTIL ACTIVATION! Yes, we are planning on filming it (my brother – the Go-Pro director himself -has offered to do this for us) and we’ll share it with you all as well.
On that note, I want to end with an enormous note of gratitude to all of our Team Finn supporters! Thank you to all the doctors and nurses at Children’s: your level of care & support is on a level of its own. Whether it was e-mails on surgery day cheering us on or sneaking me a blanket “right out of the oven” while I stayed overnight, you will always be more like family to us than just health care providers. Thank you to all of Finn’s specialist who are basically helping us raise Finn and making sure he reaches his full-potential. Thank you to my colleagues who make me feel like everywhere I turn at school, I have a shoulder to cry on or a hand to help me out. Thank you to my family on both sides, near and far- a special thank you to Yia-yia & Aunty Kathy for taking care of sick Kayla when I couldn’t be there, and thank you to the HUNDREDS of people, some we know, some we’ve never met, who reached out to us the week of Finn’s surgery sending us an incredible wave of positive energy.
We look forward to sharing this next, EXCITING part of our journey with all of you.
Peace & love to you all.