Josh only spent the one night and about half the next day in intensive care before they decided to move him on out.
Since we had to wake up at like 3:30AM Wednesday, the day of his surgery, and then I stayed with Josh with the sick baby as his roommate the night of his surgery, by Thursday, I was really, really sleepy. James signed me up to stay in the Ronald McDonald House room available to a few lucky parents whose children are in the hospital. Luckily, I was chosen to get one of those nice rooms for the afternoon... so James sat with Josh.
I figured if they moved Josh, it would be much later in the day or even the following day, so I didn't worry much about it. But, while I was resting and showering, they were moving Josh and his dad to a room out on the intermediate care floor. The best part about it - it was a private room!!!!
Josh called me on his cell phone to tell me the good news. He was feeling good enough that they let him come off his ventilator for a few minutes and he walked out of the PICU into his private room. But he had to get right back on the ventilator. He was sitting up smiling at me when I walked into his new room - room number 922.
Since Josh was successfull in walking from PICU to his new room, and doing so good sitting up in a chair for more than an hour, he decided he'd like to talk another walk and check out the floor. He heard there was a playroom and a theater! So, they came in and turned off his hospital ventilator and we took him out for his walk. I noticed soon after we left his room, he was really sweatting alot. And I noticed he got pretty quiet even though his dad was talking about how great the theater was when we got there and a child life person was there asking him about movies and games he liked. I had a bad feeling that Josh was worse off than he was letting on. I asked him if he needed to go back to his room and get on the vent again, and he nodded his head.
We started back and he got looking worse and worse. I asked him if he needed to lean on me or if we needed to get him a wheelchair. He turned down the chair, but put his hand out for me to hold onto. He barely made it back to the room on his own power. He just wanted to immediately sit in the chair - his lips were turning blue and he was pouring sweat. We hooked him up to the vent immediately. His carbon dioxide was up over 70 (normal is 35-45). And it took a bit longer to get his pulsoximeter hooked up. But it was still down in the low 80s by then (it was definitely lower than that before he got on the ventilator) very dangerous! We had to inflate the cuff on his trach to get as much air into his lungs as possible, and he just leaned his head over onto a nearby pillow and just went right to sleep.
That incident scared me alot! After Josh woke up later, I said let's not do that again for a while. He needs to heal for a few more days before we do another walk around off the vent.
I stayed another night with Josh that night. But things were much quieter this time. Except that we got woke up several times after 4am so that they could get some bloodwork, then respiratory techs had to check the ventilator, and later a doctor could take a look at his incisions and remove the bandages. We kept trying to sleep again everytime someone would leave, but it seemed like we just closed our eyes and someone else was walking in (it wasn't really that quick but just seemed like it). We finally decided to wake up and I got dressed. Soon afterward, Joshua's breakfast arrived and I went to search for coffee (it was awful by the way).
James came from the motel and brought me some breakfast from their continental breakfast buffet. It was pretty good. On my way down to go meet James to help carry in my food, an associate of the surgeon who operated on Josh stopped me in the hall. He said since they weren't really doing anything for Josh (because I was doing all his trach care and giving all his meds, etc.) we didn't really need them and he thought we should be allowed to go home. He was going to talk to the surgeon and let us know later. Wow, not even 48 hours ago, Josh was being operated on. Now they were talking about letting him go home!
So, I had good news to share with James when I went down to meet him. But we didn't know when they would hear back from the surgeon and do the discharge paperwork. So, again, we waited and watched TV. James and Josh played some battleship. And one of my cousins, who I haven't seen in years, came by and took James and me to lunch. We told the nurse to let us know if the doctor called or came by, but we didn't hear anything. Josh was busy watching a movie while we were gone. And he was anxiously waiting for the doctor to let him leave.
As the hour got later, our hopes for getting discharged Friday were dwindling. Then, his nurse said she called and another associate of the surgeon who would have to sign the discharge papers had not heard anything about sending us home. So, we started preparing to stay another night. Josh and his dad were working on picking out foods Josh wanted for his meals the next day, when the nurse came back and said the doctor was planning to come see us as soon as his procedure he was in was done. He was probably going to discharge us after-all!
The doctor showed up just before 6pm and was happy to check Josh's incisions one more time (Josh was concerned because one of them was a bit red around the edges). The doctor said they looked really good, actually. And he was satisfied with his recovery and we could go home if we'd like. Of course, Josh was thrilled to go home.
It's a three hour drive to get from the hospital to our house, and we still needed to go pick up the rest of our stuff and check out of the motel. We figured if we got to leave the hospital by 7, run by the motel (about half an hour), pick up something to eat (half an hour) we could possibly be on our way home by 8pm. That would have us getting home around 11pm.
Our plan was a bit busted, because they were in the middle of shift change and had another patient being admitted. So, our discharge was not complete and we were not even leaving the hospital until about 8 or so. We decided to go to the motel, drop everything off there, get some food and eat at the motel. We spent the night and had our free breakfast there the next morning. We loaded everything up and left there about 10:30 or so the next day.
We made it home Saturday around 1:30pm. The problem we faced was that Joshua was having trouble keeping his oxygen saturations up unless we inflated the cuff on his trach. When we do that, though, he can't talk. I told him to try and nap as much as he could so we could inflate his cuff. That worked the biggest majority of the way home. But as we got closer to home, he wanted to wake up and talk to me. And his numbers got worse and worse. It was really starting to worry me. So, instead of stopping for lunch on the way, we went straight home and hurried to get him and his ventilator into the house. James brought down his oxygen concentrator from his room and we got him hooked up to it all right away.
We've kept him hooked to both vent and oxygen since we got home, and cuffed his trach as much as he'd allow. He has been complaining some of pain - mostly from his being constipated - but also from healing from the four incisions. But we now have his prescription for some good pain killers filled. And he is finally feeling better. Josh and I camped out last night on the couch in the recliners, so he wouldn't have to try and climb the stairs.
I've also kept him home from church so he could get as much rest as possible. But we are glad to be home! And just in time for Father's Day.