Tuesday, August 30, 2016

Summer 2016: Malakai's Tonsillectomy

If you know us personally or follow us on social media then you know our sweet first born had surgery a little over a month ago. He had his tonsils + adenoids removed. The surgeon also removed his ear tubes that had been placed in June 2015 but had not come out on their own like they were supposed to.

Malakai has a tendency to get worked up about things, making them a bigger problem than they are. This is usually the case if he is afraid of something whether it be an imaginary thing or the fear of punishment for something he did or was perceived to have done. It is a difficult road some days but with Ben by my side (and our fantastic counselor) we are helping him to get a better handle on it. He has made a lot of progress over the last few months. 

So when his pediatrician and then his ENT (Ear, Nose, Throat specialist) both mentioned the idea of surgery back in the winter/spring when he had reoccuring strep throat, my first thought was how it would impact him emotionally. Would he be afraid? Would he worry about it constantly? How would we move forward to help him through these intense emotions? Imagine our surprise when he was able to focus on the positives (ice cream for a week) and not even really mention the potentially worrisome aspects. It helped that he could remember his ear tube surgery well enough to know what to expect out of anesthesia and recovery, but it had been long enough that he didn't remember the painful part. We were simultaniously proud of him and thankful to God for providing this peace. 

We scheduled his surgery for after his birthday at a time when our calendars were clear enough that we could both focus on taking care of him and he wouldn't be missing any of the big events he'd been looking forward to over the summer (see previous post for a list of all the fun we've been having!). Then when we had his pre-op about 3 weeks prior to his scheduled surgery date we started to question whether the procedure was necessary. He was healthy and we had the option to "wait and see" which basically means he could outgrow getting sick all the time but we'd have to go through a cold and flu season to find out. Were we willing to risk him still needing surgery in the fall/winter when he'd miss school? Would we be able to actually find a time to schedule it if he was constantly sick? Would our health insurance still cover it if we waited? I literally wrote out a list of the pros and cons of either option and they were totally equal, both in number of things I came up with and the weight they carried. 

We prayed a lot and talked a lot about what we should do. We asked others for prayer and advice. At one point we had said we would be cancelling his surgery, but then I took a glance at his throat and it was red. He had an episode of ear pain during our 4th of July camping trip but not since then, still I thought we should have him looked at just in case. We saw a doctor at his pediatrician's office who confirmed he did have an ear infection and prescribed him antibiotics. One challenge with him is that he has allergy/sensitivity to 2 very common antibiotics, making him hard to treat. This is part of the reason he was put on the road to a tonsillectomy in the first place as his strep throat was very difficult to get rid of. Thankfully this time he didn't have strep. The doctor told us that she could see good reason to do the surgery but would also support a decision to "wait and see". She then referred us back to the ENT to check out his ear and also determine if he could have the surgery if he was getting sick. His ENT was out of the office so by the time he had seen Kai his ear infection was gone. He said because of his history he was still a candidate for surgery, he would never recommend surgery for a child if it was unnecessary, but that we could wait and see if we wanted. However he did say if he's getting an ear infection and cold symptoms in the summer that the likely-hood he'd struggle in the fall/winter again was high. I told him I just needed someone to tell me whether or not we should do the surgery, and he told us he thought we should do it. 

So Ben and I took everything into consideration and decided that it would benefit Malakai's future health to go ahead an have the procedure done. It was a simultaneous sense of relief to have a decision made, but also panic as his surgery was just a week away at that point and I felt totally unprepared. I woke at 3am that night worrying about all the things we had left to take care of. We didn't have anyone ready to watch Desmond and Aurelia so we could both be with Malakai at the surgery center, we didn't have the right groceries to support his limited diet during recovery, we didn't have the pain medicine prescribed by his doctor yet... I did my best to give these concerns to the Lord and he really did show up, everything fell into place and then some. We had friends and family offering to bring meals and balloons and you would not imagine the number of popsicles we stuffed into our freezers.

We made sure to do a lot of fun things that week since he would have to be very stationary for the two weeks after. He got to jump on the trampoline at his grandparents', we took him and Desmond to their very first theather movie (Finding Dory) and we focused on his 7th birthday. We let him ride his new scooter late that night to make sure he got a chance to try it out. 

The day before his procedure we received a call with his surgery time. He wouldn't be checking in until 8:45 and his surgery wouldn't be until 9:45. I was dreading a long morning of having to keep him from eating and drinking. We kept him up late so he could have a snack prior to the midnight cut off and we kept spirits high by making a batch of homemade vanilla ice cream together. 

The next morning Malakai only showed one small moment of worry when he got into the car and said "I'm not so sure I want to go to magic sleepy town today" (this is our way of explaining going under general anesthesia that we had made up the previous summer when he was having ear tubes placed). We talked it over and then he was totally fine, dreaming of ice cream for dinner. During our wait he played some games and read a book. Everything was very prompt, he got back to be admitted quickly and fairly easily. He wasn't a fan of the hair covering but he complied after a few chats about why it was necessary and seeing the nurses wearing them as well. He went under anesthesia easily but for some reason I teared up, which I have every time I've seen him go under. Something about it is just the slightest bit unsettling.

I went back to Ben in the admission area and we walked out to the waiting room together where my dad was. I text family and friends that he was in surgery and we chatted casually. He was done in about 20 minutes, his surgeon said everything went perfectly but "now you have the hard part" in reference to navigating his recovery. We waited another 15 minutes or so before the recovery nurse called us back. Malakai was still asleep and she encouraged us to let him wake naturally. She started to chat with us about his recovery when he coughed and began to wake up. His dry and barky cough was startling. The nurse said it was likely a symptom of his being intubated and that getting him to drink, putting an ice pack on his throat and giving him anti-inflammatory meds would help that get better faster. I can't imagine how uncomfortable it had to be to cough after a throat surgery. He was a bit disoriented and didn't really say anything at first but he came out of anesthesia very calmly. He did say he had some pain so the before removing his IV she gave him a dose of pain medicine in it and made sure his IV fluids finished up so he was well hyrdated from the start. He requested a popsicle, and another before we left. They also gave him a dose of liquid ibuprofen.

She talked us through his discharge and recovery instructions, writing down most of it. She made sure to tell Malakai that he could not run or ride his bike for two weeks, he needed to avoid anything that would cause him to breath heavily. He turned to Ben and I and said "I don't think I should go to swimming lessons" with such sweet concern in his temporarily higher pitched voice. We assured him that he would miss a few sessions until he was all healed up. My responsible little kiddo.

We carried him out to the car and I sat with him in the back of the van to make sure I was within reach if he needed anything during the trip home. We said goodbye to G'Pa and made our way back. The entire process was only about 4 hours. When we came home we settled him into bed and he wanted to eat more popsicles right away. We made sure he had plenty of cold water at all times and I set up several little stations to make aiding him easier. He would be staying in our bedroom so I could sleep next to him for a few nights, Ben would be in the bottom bunk in the boys' room and Des would be in the top bunk. Kai had a tv tray next to the bed with a plastic tray of medicines and droppers, a bell to ring if he needed something (although he had someone by his side constantly for the first day and a half), his water, some books and the tv remote. We set up a humidifier on the night stand next to him as well to help with that barky cough.

I set up an app on my phone called "dosecast" that helped me keep track of when to give him medicine but I also kept a paper record. The app alerted me of when he was due a dose of something but the hard copy helped for having a longer history of what we had given him and when. He was on a hydrocodone and we were alternating doses of ibuprofen based on the discharge instructions which meant waking up that night every 3 hours then 1 hour on a rotating basis. It wasn't until the next day we consulted a nurse at his pediatrician's office about his pain medicines and found out that we could give him both at the same time which meant I only had to get up every 4 hours. Having him in our room made that part easier but it was still tiring. None of the exhaustion mattered as long as he was doing well.

Ben had taken the day of surgery off but needed to work from home the rest of the week. It was a nice compromise between him being able to get work done but also be here to help as needed. Malakai was really needy those first couple of days so I spent a lot of time at his side which meant Ben was on duty to care for Desmond and Aurelia much of the day.

On day two of his recovery my aunt brought us dinner and there was macaroni and cheese as a side. Malakai wanted to eat some so we let him try it (his surgeon had said it would be fine to let him eat softer solid foods as soon as he wanted) and he ate a small bowl of it. We were shocked and very excited that he was willing to eat. He was doing great at eating and staying hydrated, which were our main concerns about his recovery. Our secondary concern was managing his pain which we felt like was going well...until it wasn't.

We went by the discharge paperwork and started to give him less of the narcotic pain medicine on day 4 which ended up being a disaster as that was his most painful day. We tried again a couple days later with mixed results. He did great during the day, he was able to tell us his pain level and it wasn't so bad with less and less medicine but one night he was inconsolable and we couldn't get him to take his medicine. By that time he was back in his room but on the bottom bunk. When we tried to give him his dose of medicine before we went to bed he sort of freaked out and refused to take it, he was acting so strangely it was really quite scary. Ben spoke to a nurse and she said it sounded like night terrors. She was totally right, we have experienced night terrors before but being so caught up in recovery and pain management we were thinking it was something related to those things, especially since it was happening when he was due a dose of medicine. She did say it could be his narcotic pain meds causing him to sleep so deeply he wasn't waking fully but it was unlikely since he was having less of them. He had another night terror the following night but it went by much faster because we knew how to handle it, thankfully he hasn't had any since.

We weren't able to really start letting him sleep through the night without pain meds until closer to 7 days this was around when we were able to start giving him less medicine during the day. About 10 days later we were just giving him medicine when he asked for it, which was usually by the end of the day just before bed. By the full two weeks he was off medicines completely and able to play normally again. During those two weeks he watched a lot of tv, played on the ipad, read books, played some minecraft on the xbox with Ben and Desmond and had a lot of caring visitors who brought him things to do and eat and even brought meals for the rest of us. We felt very well taken care of which was so valuable in allowing us to focus on taking care of him.

Near the end of the 2 weeks we eased him back into being out of the house and expending more energy. He would usually self regulate his activity level. Even when he was outdoors he did a lot of stationary activities. 

Unfortunately Desmond and Aurelia both struggled a bit with the shift in routine. Desmond really had a hard time with Malakai getting to eat jello and popsicles all day even though he usually had a popsicle once a day as well. It was hard for him to not keep score but it was a good lesson for him. The hardest part was being torn in my giving attention to all the kids. Aurelia really wanted to be with mama a lot. We let them come snuggle up with us as much as possible but a lot of the time it just didn't work out. Aurelia was very clingy to me as things started to go back to normal, it has only just recently gotten better.

Malakai was so brave and relatively easy to care for through out the whole thing. Even with the few rough moments I am just so thankful for how smoothly things went compared to how it could have gone. I was told several stories of other very difficult recoveries with complicaitons so I was prepared for the worst while hoping for the best. We are happy we made the decision to have Malakai's tonsils removed, at this point he isn't snoring at night and seems better rested during the day because of it. I think it is safe to say he no longer has sleep apnea, now we will just be praying it helps him stay healthier during cold season!

I would be happy to pass along any tips and tricks if you find yourself with a kiddo facing this procedure. Everyone recovers differently of course but it was helpful for me to be aware of possible outcomes. I gathered information and experiences from other parents before and during recovery. We are just so blessed by our little community both locally and through the internet. 

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