Today is the 6 month “anniversary” of Sawyer’s lobectomy. I have been thinking about writing this post for the past 6 months, but general business with a baby and a new job has been the surface-level reasons why I haven’t returned to update. However, I think I also avoided returning emotionally to that time because it was tough… but when I recently checked into my wordpress and looked at my Sawyer’s Lungs post (which I wrote a few weeks ahead of his surgery in June of this year) I saw that it has had about 600 hits… so for a blog I don’t promote in any sort of huge public forum, that’s pretty huge. This means other parents are specifically searching out CCAM/CPAM surgery and prognosis, so I really owe it to all of them to do a play by play, as promised. **I do post pics that were provided by the surgeon as well as pics of his incisions and bandages in this post–just a forewarning!
In the days leading up to surgery, I was nervous and turned inward. I remember snuggling him as he slept and worrying that he wouldn’t make it, that something would go wrong. Chris was so encouraging, as was my friend Annie when my tears broke the surface and the floodgates opened in the middle of a coffee shop.
However, the night before and the day of the surgery I was outwardly calm, cool and collected—a coping mechanism that has served me well in many high stress situations. The hospital gave us wipes to help sanitize Sawyer’s skin after his bath, which he didn’t like one bit.
His surgery was on Friday, June 10th. He slept decently well the night before (for a 5 month old), and when we got up and made the drive to the hospital at 6 that morning, I couldn’t help but think that he had no idea what we were about to put him through.
He did okay while we were waiting for the surgery to start, but got pretty irritated when the nurses came to draw blood. We also got the rundown about anesthesia again, which we had heard when we were there for the CT scan. I was then thankful for the CT scan anesthesia, because I knew that if he could tolerate being put under once, he would likely be okay again (or, this is what I told myself). We were also greeted by one of the residents, who Chris and I called kid doctor (he looked young—we later found out he was a Bethel alum, although he was a more recent grad than Chris and I… which made us feel old). The resident marked a big x on his left side, and the plan was to remove the upper left lobe.
Sawyer was a little disgruntled because I couldn’t feed him, so Chris held him quite a bit so he couldn’t smell me as much… He was just starting to be his happy self in the little pushcarts when they came to take him back to surgery. We walked with him until the doors of the sterile area, and handed him off (I still get choked up thinking about that moment).
Then, we waited. We had great company during the wait, which really helped pass the time. My friend Vanessa came by, and spent time with us on a rare day when she was kid-free. She brought us a gift from our journey group, which was a hospital survival kit… it had snacks and magazines, which was so awesome. Chris’ parents also came by to wait with us, and Chris’ grandparents happened to be in town, so they came by to support us as well. My mom came to town for the surgery to help assist with Lydia, and she brought a sweet book that had a bunch of encouraging notes from people who were rooting for us and praying for us from afar. My friend Carrie also came by to wait with us for a bit, and she brought a bag of Aveda goodies. At the point when she arrived, it was what should’ve been the halfway point in the surgery, and I was kind of a wreck inside because we were told that we would be updated hourly. We were nearing the two-hour mark at that point. She affirmed my feelings and encouraged us to just go ask—so I sent Chris into the PACU to ask for an update. They thankfully updated us not long after that, saying that they were about to finish and start sewing him up! (So this meant that they were about 20 minutes ahead of schedule).
A short while later, I was getting antsy about wanting to stay out and wait for the surgeons to come update us again, but also knowing I really needed to pump and that I would want to go to Sawyer in recovery with some fresh milk. I went into the pumping room and of course I was only about 5 minutes in when the surgeons came out. Ugh. So I quickly got myself together and came back out to the waiting room so I could hear the update.
The surgery was a success, and they were able to do the keyhole surgery, as opposed to making a larger cut. The keyhole surgery involves 4 incisions… one for a camera, two for robotic hand/tools, and one for his chest tube. The only thing that didn’t go as expected was that the cysts were not in his upper lobe, they were in his lower lobe (the CT scans are tough to read, and the lobes sort of lay on top of each other). So after the course correction, they removed the lower left lobe (which accounts for a little over 20% of his total lung capacity). The size they removed was about the size of a racquetball… which flabbergasts me, since my 5 month old is so tiny!
The surgeon showed us pictures of the affected lobe (above, the darker purple splotches), and there were cysts everywhere. I am glad we made the decision to remove the it, since it wasn’t clear how bad it really was until they got in there. Thankfully, the lung was not infected and they were able to remove everything cleanly. He has staples in his chest to close off the area where the lobe would be, which will stay in him and show up on any future x-rays. His lungs will not regenerate, but they will expand to fill up most of the space left by the missing lobe. The pics below is a view of the staples and the space left after the lower left lone was removed:
Modern medicine is so amazing!
The recovery was not fun. I was able to go back and hold him as he woke up; I could hear him crying before I entered the recovery area, and the nurses were sweet to help me situate him. I tried to give him a bottle of milk (because I didn’t want to hurt him by having him on his side to nurse), but he wasn’t having any of that. So I just sat there, holding my little crying baby, knowing I could do nothing to help him feel better in that moment that I wasn’t already doing.
After he calmed down a little, the nurses called to see if his room was ready. I then accompanied him up to his room. The poor little guy was so puffy from all the fluids. I was nervous to hold him or move him at first because of the chest tube… I was worried that it would move or slip around, hurting him. I now know that although the tube really does hurt them inside because it sits on nerves between the ribs, me moving him won’t pull out the tube because they stitch the tube around the opening to keep it in place (I wasn’t aware of this so I am sharing this so other moms and dads know that the tube isn’t going anywhere).
The first night was brutal, and I basically held him with breaks to pump. He wasn’t taking in much milk, so in order to keep my supply up I had to call in the nurse to help put him back in bed because Chris and I were so worried about hurting him if we moved him ourselves.
The next day, he still seemed to be in a lot of pain while awake. The surgeon saw him on his rounds, and although the incision and chest tube drainage was looking good, because of the pain he was in, he ordered for there to be a continuous morphine drip, rather than the oral dosage he would get every few hours. Even at maximum dosage, he would be in so much pain (until the medication was dispensed, then he would pass out).
The nurses were really stretched thin on our floor, and he cried once for over a half hour in pain. We pushed the call button multiple times, and a nurse would occasionally pop her head in, but none of them had the clearance to dispense more medication (and our nurse was not available due to an emergency). My mom was there visiting at this point, and she was beyond upset about this. I just kept trying to sing to him and cuddle him, but it was so hard to see him in pain. Eventually our nurse came (we were at 50 minutes of wailing at this point), and dispensed medication that then made him pass out again.
The charge nurse was made aware of what happened, and later that evening we were visited by the pain specialists at the hospital. The combination of the wait time and the medication not working had apparently pushed Sawyer’s case up the hierarchy and the pain specialist took over his case and pain management from that point out. Apparently, this isn’t typical of the recovery from this surgery in an otherwise healthy kiddo, but we had never been through it before, so we had no idea that something was amiss.
He was then given a litany of medications, and we were so grateful that he was getting some relief. It wasn’t until day 3 that our little guy smiled for the first time since the surgery, and he seemed then to be on the upswing. He started drinking some milk (before day 3 he would only have maybe an ounce or two at a time a few times a day). By day 3 I was back to nursing him and he definitely preferred that.
Chris and I slept in the room with him each night (Chris in the chair and I was on the couch… when he would need comfort or needed to nurse, we would switch places). During the day, we sat with him while he slept, watching Friends episodes or reading magazines. We celebrated our 6th anniversary, Sawyer’s 6-month birthday and Chris’ 29th birthday in the hospital, so it was a big weekend! Chris’ parents, Chris’s brother and his family and my mom all came to visit during his stay (Sawyer snoozed through most of the visits, which was much better than crying in pain).
By Monday, Sawyer was starting to act a bit more like himself, but it was clear his chest tube was still really bothering him (and whenever we started to back off of some of his medications, it was clear he wasn’t ready to do that). On Tuesday morning, we got the great news that because the drainage had slowed down and was no longer bright red, his chest tube could come out! The nurse practitioner came to remove the stitches and tube, and I assisted in keeping Sawyer calm, and observed the process while holding him down. After a little crying because of the stitches, the tube was out, the opening was covered with gauze and Sawyer was exponentially better. It was so nice to be able to pick him up without worrying about the tube, and Sawyer was able to sit up (a skill he had only recently acquired).
After his sister came to see him and we walked the halls a bit in the wagon, we were officially discharged that afternoon. We took Sawyer home only to find that his chest tube site was leaking all over the place (through the gauze and through two layers of clothes). We nervously called the hospital again, who told us that we needed to come right back.
My concern was his collapsed lung, since Sawyer had a open hole in his chest and all. Thankfully, all they needed to do was refresh the gauze, and the surgeon we visited with (not our own, but on his team who also performs the surgery) basically said that it was no big deal. That we would know if there was anything to worry about… so I guess that was supposed to be reassuring, but I’m no M.D.
So overall, we were in the hospital for 4 nights… his pain and recovery seemed to be a little worse than the typical case, but the length of his stay and his recovery after he got home seemed to be pretty typical from what I have read. After he got home, we kept him on his pain medication regimen for 3 days, did ibuprofen as needed for a day or two after that, and then he was good to go. His chest tube continued to have discharge, and the bandage even had looked a little green under the tape. I was concerned about the color, so at a week out, we went back to the clinic and had the surgeon make sure it wasn’t infected. Since we were in the clinic anyway, he did his post-op check and said he was healing up beautifully. The test results came back, and the CPAM diagnosis was confirmed. We were also relieved to hear that the cysts were benign, so our hope is that this is the end of his journey with the pulmonary clinic!
After we came home from the hospital, Sawyer regressed a bit with his sleep… he slept in his own space (a pack and play) before the surgery, but post-op, he refused to sleep unless he was laying next to me. We ended up bedsharing for 6-8 weeks after that, and I was fortunate that I wasn’t working at the time (we were on summer break), because I am never able to sleep deeply when I’m sharing a bed with one of our little ones. He now is in his own crib in his own room, and although he still wakes a few times a night, we both sleep better now! His older sister also was still waking a few times a night by this point, so I know it wasn’t the CPAM.
His incisions today look fantastic… I kept him in a swim shirt all summer, so the sun wasn’t able to get to them (our surgeon suggested that we keep him out of the sun for at least a year for the best results if we wanted the scars to be less conspicuous). I can barely see them now, and the only major thing is that his bigger incision creates sort of a bump on the side of his back. Some day all the girls will think his scars are pretty BA, I’m sure 😉
I was expecting him to have some physical regression after his surgery, but he got back into business right away. He is brave, and even started to stand and walk months earlier than my first, non-CPAM daughter (he turns one tomorrow, and has been walking for over two months!)
Anyway, we are so incredibly grateful that this chapter is over. Babies are such a miracle, and I am so thankful for doctors who know how to perform delicate surgeries, and we are blessed to have a team of people who lifted our whole family up in prayer.
**If you are a parent of a child with a CCAM/CPAM diagnosis, feel free to comment on here and I can email you and/or add you to the parents of CCAM babies group on facebook.