Welcome to Part 2 of the so-called “A Long Six Weeks” series. In Part 1, James was in the hospital for six days with pneumonia. During that hospital stay, Stacy was trying to find a doctor or surgeon to stop by James’ room to look at the wound he had on his tailbone that started shortly after his spinal fusion surgery in 2019. She was unable to find a doctor at that hospital but did locate one at another local hospital.
We met with him on July 19th and his recommendation was to shave the tailbone down a little bit and perform an adjacent tissue transfer to close up the wound. The way he explained it, he was basically going to take the skin from one side of the wound, pull it over to the other side, and sew it into place, thereby closing up the wound. After the surgery, James would be in the hospital for a couple of days, and then go home where he would need to stay off his butt for four weeks. We scheduled the surgery for July 27th, twelve days after he got out of the hospital from pneumonia.
Tuesday, July 27th: Surgery Day
After testing negative for Covid on the 25th, he was cleared for surgery at 11:00 am on the 27th. Shortly after they took James back for surgery, the doc called in a bit of a panic because James was a bit congested and his sats were low. Stacy told him to tell the nurses to give James a good suction. After they did that, his number popped back up and he was good to go.
An hour or so later Stacy got another call to let us know that he was all done. The doc did warn her that James was intubated during surgery, which is standard procedure when they do surgery on the back area, and he’ll probably remain intubated until tomorrow. He didn’t want us to freak out when we went up to see him. And this is where things got a bit ugly.
Surgery told us that we could go up to his room, but when we got there, they kicked us out! There were too many people in the room, and we’d have to go wait in the lounge. Excuse me! Our kid just got out of surgery, and we were told we could see him. Now you’re telling us that we can’t?! Imagine how scared James must have been to have just come out of surgery and be surrounded by a bunch of people he didn’t recognize…and all of them wearing masks because of Covid and not being able to see their faces. Now imagine how worried we were when we were told that we could go up to see him, only to get there to find half a dozen people surrounding his bed and be told that we’d have to leave. They didn’t give an explanation other than there were too many people in the room. Was something wrong with James? Is he okay?
Needless to say, we were fuming, but we went down the hall to the lounge to wait. And what do we see on the wall in the lounge?
Let me tell you that we almost tested their “zero tolerance” policy. Fortunately, by the time they told us we could go and see him we had cooled down a bit. We did make a complaint about the way we were treated and one of the nurses sat down with us to listen to our complaint. She then explained that they have a new protocol in place—I’m assuming because of Covid—that the kids get settled into their room, the nurses go over the notes for that kid, set up the machines, and then the parents can go up to the room. The surgical waiting area jumped the gun and sent us up before they had him settled in and there were just too many people in the room. We understand that, but someone should have told us that in the beginning when we first got up there, and not “you can’t be in here right now. You need to wait in the lounge.”
Here is how he looked when we were finally allowed to see him:
Are you wondering how bad the wound was on his tailbone that it required surgery?
WARNING: The next two pictures below are not for the squeamish, especially the second one. I have a hard time looking at it. I couldn’t figure out how to block the picture and only let you see it if you clicked on it. If you don’t want to see it, you may want to cover your eyes a bit.
This first picture was taken in February. Stacy had been doing an excellent job taking care of the wound and it was healing nicely.
Then he went back to school full-time in March and it progressively got worse with all the moving around, in and out of his wheelchair. The wound totally opened up to the point that you could see his tailbone. This is what it looked like in early July:
And this is what the area looked like after surgery. We were itching to see what it looked like under the bandages, but we needed to let it heal first.
The surgeon removed a little bit of the end of the tailbone, and then brought muscle and skin from one side of the wound to the other and sewed it in place. The clear tube thing on the purple bandage is a wound vac which is used to drain excess fluid from the wound.
Wednesday, July 28th
The first night post-surgery was uneventful. Early Wednesday morning they reduced the settings on the ventilator to see if he was able to breathe on his own. He did good and by early afternoon they removed the vent. He didn’t even seem to need any supplemental oxygen. Rockstar!
They started him on slow feeds, which is what we typically do after James has surgery. His digestive system gets out of whack after a surgery and takes a few days to wake back up. We’ve found that if we start feeds too soon and/or too fast after surgery, he doesn’t digest it and his belly gets distended. After his spinal fusion surgery, he was in the hospital for a month while we waited for his digestive system to tolerate enough formula that he no longer needed IV fluids and nutrition.
Thursday, July 29th
I guess it wouldn’t be a typical hospital stay without some sort of “episode”. Stacy was awoken in the early morning to some commotion and a couple of nurses using an Ambu bag on him to get his oxygen sats up.
Because James can’t clear his own secretions, he sometimes gets a mucus plug in his throat that he can’t clear. He must have gotten one of those mucus plugs stuck in his throat. Once they got the plug out with some suction, his numbers popped up. They put him on a non-invasive ventilator like the one he normally uses at home when he sleeps to help keep his numbers up. They later moved to a nasal canula with a little oxygen and moisture to help keep his airway moist. Hospitals are really dry.
A physical therapist stopped in to show Stacy some moves she could do with James while he was on his belly since he was going to be spending more time than normal in that position while he recovers.
Infectious disease ran some skin and bone tests to check for infection. They also switched up the antibiotics that James was getting.
Friday, July 30th: Cleared to Go Home
James (aka The Rockstar) got the all clear to go home. They switched his antibiotics over to something he could take at home and replaced the hospital wound vac with a portable one he could travel with and use at home.
Note that the bandages on his knees in the picture are just to prevent pressure sores from spending so much time on his belly while his butt heals. He just had one wound surgically repaired; he doesn’t need any more wounds.
Saturday, July 31st
This is just our luck. We weren’t even home for 24 hours and the wound vac that they sent us home with died. It just quit working. We thought that maybe it needed to be charged, but it wouldn’t even do that. We put a call into the doctor, got his answering service, and he called us back a little while later. He told us that we could just take it out because he had been using a wound vac for five days, which was long enough.
This is where James will be spending the majority of his time while he recovers. We bought a therapy table at a Habitat for Humanity Rehome Store a while back, which was probably one of the best investments we’ve made. It’s much easier on our backs than putting him down and picking him up from the floor when he gets belly time. To make it more comfortable I ran down to Target and bought one of those egg carton foam mattress toppers to put on top and then covered it with a fitted sheet to help keep it in place.
For those of you curious what the incision looks like, the picture below was taken on August 1st, five days after surgery. Stacy’s hand is covering his butt crack, and that white line at top middle of the picture is the bottom of the scar from his full spinal fusion. We joke that “chicks dig scars”, but all of James’ good scars are on his back where the chicks won’t see them.
That concludes part 2 of this 3-part series. Stay tuned for the final episode in the series to see what happened next. I will hopefully have it posted in a few days. Unless of course something else happens. We just never know with this kid. We love him, but damn dude, mommy and daddy need a break!
