In case you missed it, more of an explanation on how Alex wound up needing surgery can be found in this post. So, on with the saga…
Wednesday night was a rough night of sleep for both of us, thanks to the obvious disruptions of nurses coming in to take vitals, doctors coming to follow up at 5am, and all of that jazz. The entire night was a total whirlwind, and before I knew it, we were being told to get Alex in a gown and ready for surgery at 9am.
From the blood work that had been done the day before, his white blood cell count was fine, but his inflammatory markers were up fairly high, so that was another indicator that his body was working hard to try and fight off whatever infection this was.
It was still just myself and Alex that morning, since Jay was home with Lucas, and I was beyond nervous about making sure I remembered everything the doctors said, whether or not I was asking enough questions, or the right questions…
Eventually we were brought down to surgery, where we first met with a nurse that took more of the same information we had been relaying to everyone, and then had me sign off on a bunch of paperwork.
At this point, we still had no idea what type of an infection we were dealing with, and whether or not the infection was in the bone, in the soft tissue, or just the skin. So the surgery was ordered to allow for them to go in, clean out the toe, and get some cultures done on the bacteria that had found its way into his toe.*
*I realize I’m likely not using the correct medical terminology (a doctor, I am not), but this is the gist of it.
One of the items that I had to sign off on for the surgery was the possibility that they may have to amputate a portion of Alex’s toe. So here I was signing off on a “maybe we’ll have to amputate, but we won’t really know until we get in there,” having no idea what to expect once my little guy came back.
They were able to give him the anesthesia while I was with him via his IV, so he began to get incredibly sleepy and was able to be handed off to the nurse without really realizing what was going on (I was devastated by the idea I’d have to just leave him laying there, upset). The surgery itself took maybe 30-40 minutes or so, I can’t really recall the exact time, but Jay ended up arriving at the hospital before the surgery was over.
I was starving, and thankfully, Jay brought me an egg sandwich and some coffee. I ate what I could while we sat and waited for the doctor to come out, which happened probably 15 minutes or so after Jay arrived.
The doctor told us that the surgery went very well and that they were able to get some samples to be able to send off to test and determine what exactly we were dealing with. He said we likely wouldn’t get the results of that for another 24 hours, but that Alex was in recovery and that we could go and see him.
Once we got to him, he was still sound asleep…
And he was probably asleep for a good half hour or so while we sat and waited. He woke up pretty out of sorts, but overall, he was good. Since he was able to drink some juice and keep it down no problem, we were allowed to head back up to our room.
Considering he’d just been through surgery with anesthesia, this little trooper was doing so well. He was walking around, finally having some breakfast and his beloved milk, and playing around with the two of us.
Eventually, we got him dressed and spent a few more hours that morning and afternoon just doing what we could to keep him occupied and entertained.
We also kept in touch with my mom, who had picked Lucas up from daycare early that day for a “special” day together, which was much appreciated.
One of the things I was really upset about was the fact that we had purchased tickets for Jay, myself, and Lucas to attend a local “Santa’s Magical Express” with Yankee Trails for Thursday night. Obviously, we weren’t going to be able to go anymore, and my mom guilt was in full swing.
But I was so thankful for the fact that my mom and brother offered to take him so he could still take part in the fun, and gave us plenty of photo updates throughout the evening.
Backtracking to the morning again…
Not knowing at this point how much longer we were going to be at the hospital, I told Jay I could really use a shower, so he stayed with Alex for a bit while I ran home quick to shower and pack a few more things. It worked out perfectly, and Alex wound up sleeping on Jay almost the entire time I was gone. Poor little guy was so tuckered out.
While I had stopped home, the pediatric infectious disease team had come in to consult with Jay and finally had some more feedback for us. Turns out, the infection we were dealing with was actually a strand of Group A Strep (the same thing that gives you strep throat), and we were shocked (who knew?!) and also somewhat relieved. While Group A Strep can certainly be serious, it seemed a little less severe than some of the other potential possibilities that had been swarming around in my brain.
It’s very possible that he had somehow had a little cut or scrape on his toe and, somehow, the bacteria got in that way. I was so confused because there wasn’t anyone around us or daycare that had had strep, but (I think) they explained it as, just because someone isn’t diagnosed with it doesn’t mean they aren’t a carrier of it. Any of us could be carrying it right now and it could just be lying dormant (again, I think that’s what they said…I could be totally off).
So their main concern at that point was whether or not the infection was in the bone or in the skin/soft tissue. His x-ray from the day before appeared to show that Alex was missing a portion of his pinky toe, so they were concerned that the bacteria had been eating away at the bone. However, because the pinky toe on an 18 month old is so small (combined with the fact that he had moved a bit so it wasn’t totally clear), it was difficult for them to say for sure.
To play it safe and err on the side of caution, they determined that they would be treating him as if the infection WAS in the bone, which meant a longer course of antibiotics. Because they knew it was Group A Strep, they changed his antibiotics to more specifically treat it, and started giving those to him via his IV.
At this point, because they knew the infection, there was more discussion on how long we could potentially be staying at the hospital. The doctor cautiously said that she assumed we’d be home by Christmas, but she couldn’t be certain just yet because they wanted to continue to monitor him and make sure the infection didn’t appear to be spreading systemically or into the blood. They were also trying to determine whether or not Alex would be able to go home taking antibiotics orally, or if he would need a picc line to get the antibiotics via an IV that Jay and I would need to take care of.
The thought of going home with a picc line horrified me.
So Thursday evening, Jay headed back home to pick up Lucas from his outing with my mom and brother and Alex and I settled in for another night together. I’m fairly certain that every single time I finally got him to sleep, it was time for another nurse to come in to check vitals/give another dose of antibiotics/take blood, so sleep was minimal. But through it all, he really was a HAPPY kid, so I couldn’t complain. The sleep would come eventually (right?!).
At some point during the night/early morning into Friday, the nurse had come in to take more blood from Alex and the vein in his arm blew, so his IV was basically busted.
Which meant they needed to try and find another new vein to insert another new picc line. That was probably the worst experience of them all because the nurse couldn’t find a vein, Alex was hysterical, I was exhausted and hysterical…it was just a mess.
In the end, they held off on inserting another one and waited to check with the doctors to see what the next steps were. At this point, all I really wanted was a good coffee. One of our sweet nurses told me that there was actually a Dunkin Donuts’ in the hospital, so she found me a stroller and told us to go for a little walk to get out for a bit. It was EXACTLY what we needed at that point, and it felt so good to get out and move (oh, and COFFEE).
We slowly made our way back up to the room and hung out for the morning playing, still waiting for more feedback on what the plan was. It all sort of blurs together at this point, but I do remember that someone from infectious disease had come in while Alex was napping on me that afternoon. We discussed the whole situation and she informed me that she didn’t feel the need to send him home with a picc line, she felt comfortable with him taking the antibiotics orally, and that she didn’t see why we couldn’t be discharged later that day. AHHHHHH!
Finally, by late afternoon on Friday, the attending physician came in and said that we would be discharged. THANK GOODNESS!!!
The whole process took some time, but finally, we were packed up and eventually made our way back home to Jay and Lucas <3
Since we’ve been discharged, we’ve been to a number of follow up appointments with infectious disease, orthopedics, and his pediatrician. We’ve had blood drawn, and his inflammatory markers are down significantly. His toe also appears to be healing very nicely.
Alex gets antibiotics 4x/day, every 6ish hours. We have to wake him up in the middle of the night for his one dose, and Jay and I take turns on that one since it’s not always the easiest to get him back down. He’s also on a probiotic 2x/day, as well as eating lots of yogurt to help balance out his little tummy. We’ve had lots of diaper rash and lots of poo over here.
But as of Wednesday, the orthopedic doctor suggested that he didn’t believe the infection is/was in the bone, and his recommendation is that we don’t need to do a course of antibiotics for 6 weeks like originally anticipated(!!!). We meet with infectious disease again next week to get a final determination (with more blood having to be taken again before that), so I’m keeping my fingers crossed that they’re all in agreement that he’ll be able to be off the meds sooner rather than later.
The whole situation really was such a whirlwind, and it boggles my mind that something that seemed as minor as a swollen toe turned out to be so much more. Not only that, but I was so quick to assume it was no big deal.
I am now continuously nervous and paranoid about everything. I’m paranoid that Alex’s infection is spreading without us realizing it. I’m paranoid about any little nick, cut, or scrape anywhere on the boys’ bodies. I’m in total worry-mode, which leaves me very uneasy, and I’m hoping that will just settle with some more time.
But I’m also SO incredibly thankful for the fact that it didn’t turn out to be anything more serious and that our stay in the PICU didn’t have to be any longer than it was. I am very aware of how lucky we are, and the fact that I knew we would be leaving when others may not, really helped put things into perspective while we were there.
I know this was a long post, so thanks for sticking with me if you’re still here(!) but I also wanted to write all of this down for myself, too, so I can look back on it some day and tell our little Alex all about his little adventure ; )