It didn't go as planned

A lot has happened over the last week, since my last post. It's been kind of a wild week. What started out as a simple procedure, has turned into 3 nights in the hospital. Here's how it all happened. We went to the hospital on Wednesday as planned for John's trach closure surgery. The first sign that this was going to be a wild week should have been when the fire alarms went off WHILE HE WAS IN SURGERY. There was no actual fire, and it didn't affect the surgery, but everyone in the waiting room had to go and stand behind the fire doors until the all clear was given. It was kind of a crazy thing to happen while your child is in surgery. Surgery went well. Apparently it was more involved that we originally thought. I thought it was just a small procedure, but it was definitely a surgery. Because of that, he actually had to stay a night in the hospital. That is apparently normal with this surgery, but we just weren't completely aware of that ahead of time. So we were not prepared. But it wasn't a big deal. Tommy went home and got John and I what we needed and we stayed one night. The hard part was that we didn't get our own room. We got a bed in a pod, with 3 other beds. Two of those beds had patients so we did not have a restful night. Also, there was no bed for me, only a chair that didn't recline all the way. The only actual sleep I got that night was when I crawled in bed with John. I should have just done that all night. After the surgery, the doctor left a drain in his neck to drain off any excess fluid. Early Thursday morning, one of the residents came by and took the drain out and put a steri strip over the hole so that it would close on it's own. We came home like everything was normal. We just had to keep the incision site clean and dry over the next several days and eventually the steri strips would fall off on their own and it should all be healed. Monday, John started Super Place Camp. This is the same camp that he has attended in August for about 7 years. It is held at a different church each year, and I usually spend the morning at Starbucks while I wait to pick him up. I dropped him off Monday morning, then went to Starbucks. When I picked him up about 12:15, I immediately noticed that his neck around the surgery site was red and puffy. That concerned me that he probably had an infection. Then I noticed a little bit of leaking from the site. By the time I got him to the car, it was full on oozing. So I drove him straight to Texas Children's ER. We got into a room right away and it didn't take long to see a doctor. They called the ENT team to let them know we were there. The same resident who was in John's surgery the previous week and who had taken his drain out before we came home, came to see him. By then, some of the steri strips had come off when the doctor was trying to clean the area in order to get a look and you could see a small hole. So the decision was made that they would admit him, start him on IV antibiotics and they would pack the wound and let it heal itself from the inside. With an active infection, it's not a good idea to suture the hole closed because that would just make the infection worse. You want the excess fluid to drain. So we got a room, this time on a different floor and we had our own room. Yay!!! They started the IV antibiotics and we were planning to be discharged the next day. When the doctor came in the following morning to remove the old packing and put new packing in, I noticed while he was packing that the hole opened wider than it was. That really concerned me and honestly it was really gross to look at. John's ENT came by to see us later that morning and she decided to keep him one more night so he could get more IV antibiotics. So we settled in for another night. By that evening, the site just looked nasty and I was very concerned about our course of action and what it would mean for him starting school. The same doctor from the morning came back that evening to change the packing again and he told Tommy and I that we should not cover it with a dressing. I couldn't see him going anywhere with a gaping hole in his neck. The next day, our ENT came back to see us and gave us our options. Either, we could go home with oral antibiotics and the supplies to pack the wound ourselves at home and let it heal itself from the inside, or we could go to the OR and she would put a few stitches in the wound. She wouldn't close it completely, but she could make it smaller. But she was concerned that because the tissue there was infected, it wouldn't hold the stitches well and it may make the infection worse. So we chose to go home and take care of the wound at home. We have a follow up appointment with our ENT next Wednesday and she'll check to see if there is any progress in healing. If not, she would consider going ahead and doing the few stitches. In the mean time, we are cleaning it a couple of times a day and changing the packing every other day. And we are putting a dressing over it to keep any dirt and bacteria from getting in there. She told us if things got worse to call her and she would see him right away. She even gave us her cell phone number to call her on. She is a pretty amazing doctor. She has taken care of John for all of his 10 years and is always so great with him. So it turns out what actually happened is that the incision didn't open back up. The hole with the drain seems to never have closed all the way. When he got the infection, it started draining and the hole opened up wider. The hole is actually bigger than it was when he had his trach. It's just really weird. But through the entire process, John has been completely fine. He has never run a fever and he never even acted like he felt bad. He was his typically happy self, and was having a great time flirting with all of the pretty nurses. This kid is something else. Hopefully we are through the worst of it and he can finally start to heal. I think I will keep him close to me until school starts, just to be sure nothing crazy happens again. With the amount he moves around, there is some concern with how long it will take to heal completely. Thanks to everyone who called, texted, sent messages and most of all prayed for us. It's so tough being in the hospital with your child, but knowing we have so many supportive friends and family, makes it all a little easier. Hopefully now we can just enjoy what's left of our summer.