Here's the story that needs to be told before I completely forget. Because someday, Max will want to know. Its a story that isn't finished, hasn't been particularly easy and one I'd love to give back. But sometimes, the universe has other plans. So here ya go.
About a week after Max turned one and had a well-child checkup with our regular physician, we noticed a bump in front of his right ear. I called the clinic right away and was told by a nurse that as long as there was no fever, redness or pain just to give it time. A week later, I called again. A week after that I made an appointment with our physician. He had "never seen anything like it" but contacted an Ear, Nose and Throat Specialist in Bismarck where he relayed the information that we should do warm compresses and massage to the area every 2 hours and call in 2 weeks if it hadn't improved. Well, it didn't so we made an appointment for the first week of December. Initially, they scheduled us for a CT scan and then appointment at the clinic but called the day before to cancel the CT scan because they realized they couldn't do a CT scan on a 15 month old at the clinic, as the procedure would require sedation. In the meantime, the bump had continued a slow growth until a few days before the appointment in Bismarck where it grew much faster, and started turning red. We headed to Bismarck the night before his appointment and stayed at a hotel so the boys could swim. I grabbed a few shots the morning of his appointment (a Friday).
I can tell you that it didn't look this bad for the 6 weeks prior to his appointment. While it did continue to grow at a slow rate, much of this occurred in the few days before we headed North.
When we met with the doctor, he started by saying that he didn't want to order unnecessary tests, we hadn't tried antibiotics so he thought that was the first course of action. And then he touched "the bump". His decision changed immediately and they called the hospital to get us in for an MRI that afternoon. He said depending on the results, we may still try antibiotics or opt for surgery. We had to wait for him to digest his breakfast which made for a long afternoon. The MRI showed several pockets of fluid that were not properly draining, all related to the salivary gland. There was one main pocket of concern, but no abscess relating to the swelling which was good news. We talked with the doctor on the phone and chose to do the surgery, but in the meantime they had woken Max up from anesthesia, and we didn't want to put him back under right away, so we were admitted to St. Alexius in Bismarck to let some IV antibiotics combat the infection that had developed from the pockets not draining.
For the most part, the kids had a blast at the hospital. There were great toys to play with, game rooms, halls to walk and Gage got to stay at a hotel with Jack and swim, swim, swim.
Looks like fun, right? About 48 hours after we were admitted, both boys started puking. Gage at the hotel and Max at the hospital. They puked the first time within 15 minutes of each other. I can tell you that Jack had it way worse at the hotel. After Max's 2nd bout, they started him on anti-nausea meds and bumped his IV fluid intake. He was in good shape in no time. Gage had to tough it out on his own. The nurses worried about dehydration and suggested calling our physician or taking him to acute care. Good stuff, right? He was such a trooper. I only left the hospital once and never made it to the hotel, but Jack said it looked like a war zone. Not cool. Somehow, we managed to keep the pukes at bay ourselves.
Meanwhile, we let Max have the weekend to try and combat the swelling. I think we'd have had better luck if an allergic reaction wouldn't have developed the first night we were there. They aren't positive it was the antibiotic, as the poor boy also has terribly sensitive skin and could have reacted to the scrubs/sheets but at any rate, it wasn't fun. They had to stop that medication and then wait for the doctor to call in something else. The standard-issue hospital lotion they gave us only made it worse and the tape used on the IV left pretty good marks too.
It wasn't until the 2nd or 3rd day that we found this window at the end of the hallway where he could watch the traffic. We put a few miles on trying to keep Max busy and happy and walking helped a lot. Every 2 hours (like clockwork) they wanted us to do the warm compress. At this point, the bump was infected, red and tender so he screamed every time for the first 2 days. Then I got a VHS copy of The Lion King and he sat as still as could be on my lap watching that while we pushed on his head.
Seriously? We couldn't have asked for a better patient. I cannot even begin to imagine the same experience with Gage at this age. They had all of the equipment we needed to try and keep him happy. We ordered a la carte every meal and snack for him, had hundreds of movies to choose from and a few blond ponytails to flirt with. He really preferred the young, blond nurses most. Try explaining that to the middle-aged brunette night nurse who can't figure out why he cries when she enters the room.
Putting on the miles...once Gage started puking we tried to contain our germs to our room and him away from the hospital a little more. But by Sunday night it was evident that Max would be headed to surgery on Monday morning so they woke up super early and joined me about 7:30 to head downstairs. They estimated the surgery to take 30-45 minutes and it took 11. Our ENT doctor was awesome and with four little kids of his own, understood a bit what we were going through.
Post-surgery dressing. It didn't last long before it fell right off. Way more impressive-looking than it needed to be. The incision was less than one inch long right in front of his ear lobe. The doctor actually said its the same place they make an incision for a face lift and also a place where most people develop a natural crease. Max did great during both trips of anesthesia and our biggest post-op concern was eating too much too fast (they'd pulled him off of feed and fluids the night before) and walking too fast in the hallway. He only had 2 doses of Tylenol post-op for pain management.
Same window, different day. I was feeling a bit claustrophobic at this point. Max too. We actually borrowed a stroller from the hospital to walk the halls as my arms and back were screaming from hauling him around and he walked too fast for the short IV leash.
So when we checked in, the regular infant rooms were all full and they put us in a PICU room as "overflow". Thankfully we didn't have to use most of the equipment in the room. But the baby jail did come in handy when I needed a break. Or a sandwich. Or a nap. The one piece of equipment that was used at the nurse's station was the in-room camera. They'd wait until they saw him wake before they bugged him for vital checks at night. And at one point during the day a nurse came running into the room to tell me he was trying to crawl out of the crib. Dressed. Like. This. He figured out to put toys along the edge, stand on them and reach over the rail. It was great fun.
Watching The Lion King, no doubt. I didn't keep track, but I'm guessing 20x and many more times since.
I think this was morning of discharge. Somersaults in the crib. Outstanding.
Since the five day stay at St. Alexius, we have done warm compresses to the area 2-5 times a day (five at first, now it needs it less often), been back for 3 follow up visits (#4 this week) and seen marked improvement. Its possible he'll need another operation, but at this point we are happy with progress. We have reopened the incision at the office visits to give the drainage a change to leave through the side of his face instead of his saliva duct, which hasn't been able to keep up 100% yet. The duct probably collapsed or shrunk in the time it wasn't being used and needs time to get back to normal. I wonder if without extra saliva production from teething we'd be further ahead. Speculation. The healing is definitely not linear meaning it might look better one day and then regress a bit for a few. Looking back at these pictures is good for us in that we can see how far we've come. Its sure been a trip. Probably a fluke deal and so terribly rare that there's nothing to tell us how long the healing process will take or what we can expect for the future.
But for now, we'll take it.