Thursday morning (Sept 22nd), Will and Jack decided to make a ginormous mess in the brown sugar. I had to take off their clothes and then do some damage control because it was on the counter, floor, inside the oven, and the oven drawer. After cleaning the mess up, I proceeded to redress them. When it was Will's turn, I noticed the incision on his chest looked a little bit irritated towards the bottom. Since the boys had been running around shirtless and rowdy while I cleaned up the brown sugar mess, I thought maybe that had something to do with it. I called Patrick and he said it was probably no big deal. I decided I'd wait till after Will's nap and look at it again.
I checked after his nap and it still looked redder than normal, but looked better than it did earlier.
After dinner, Patrick gave the boys a bath. I was getting ready to go to a meeting, when Patrick let me know that one of the stitches looked like it was "leaking" a clear pus. We called Will's neurologist who told us to call the surgeon. He said it could be superficial meaning only a stitch had gotten infected, but that signs of infection usually show up around the 4th week post surgery (We were just shy a day of 4 weeks). The surgeons resident told us to take Will to Vanderbilt's ER. We called Mom and Joe who were headed to Rocky River, they immediately turned around and headed for our house. Feeling pretty guilty about leaving a very suspicious Jack, I decided to wait with him for Mom and Joe to arrive while Patrick went ahead and took Will to the ER. Before Mom and Joe arrived, Jack was sending me some pretty strong hints that he was staying with me, but luckily by the time they got there he was more than happy to leave with them.
Driving back to Vanderbilt was a bit surreal. There is a 1% infection rate with this surgery and in those cases the surgeons usually end up having to take the stimulator out. And once it comes out, there is no chance of getting it again. It is a "one and done" surgery. Fearing that if the infection was more than skin deep we would lose this incredible tool that had really helped in controlling and stopping so many of Will's seizures was a little hard to think about. So I tried really
really hard to be optimistic and remember there was a Greater Power at work.
When I got to the ER, it was packed. I found Patrick and Will and started waiting with them. Despite being back at a hospital, Will was as happy and chipper (and silly) as ever. They had been there since about 8, and I had gotten there around 9. We did our best to make a bed using our legs and laps so Will could sleep while we waited (his usual bed time is 7:30). He did fall asleep, and about 20 min later they called him back. After seeing several doctors and a few nurses, we finally saw a couple neurosurgeons who decided we should stay and start some pretty intense antibiotics and take some blood cultures to determine white blood cell counts and things like that.
In the morning we met with the doctors and were told good news. It looked like the infection was superficial according to blood count levels, and that Will would go into surgery to have a p.i.c.c line put in place so we could administer antibiotics at home for 2 weeks. It was a little nerve-wracking, the idea of having a rambunctious almost 4 year old with something so delicate as a p.i.c.c. line in his arm. If I had been told this a few months earlier the task wouldn't have seemed as daunting since all Will did then was lay around mostly. But now he was almost as active and vibrant as most children his age, something I was not used to but relieved to get to experience again. While we were waiting for Will to go back into surgery, Will's neurosurgeon checked in on us and took a look at Will. He told us that we were pretty much doing over kill with all the antibiotics, but considering how if the infection did get inside his body we would lose the stimulator as an option, we needed to be extremely aggressive.
While Will was in surgery, we met with the a representative of the infusion company. She gave us a little mini course on how we would administer the medicine and take care of Will 's p.i.c.c. line. A little scary but she was very helpful and gave us all the information we would need.
Following Will's surgery, he was a hoot! The nurse taking care of him was highly flirted with. He told her he wanted to go home with her. When she let him know she had three daughters, Will said, a little dejectedly, "Never mind." Will still needed an X-ray done to make sure the p.i.c.c. line was where it was supposed to be. Somewhere between all of that, he snuck a kiss on the nurse. He's quite the charmer!
By the time there was a room available for us to stay the night in, it was close to 4 or 5. Although Will had been put to sleep, it still wasn't the same as really getting a good nap in. We ate dinner, and then went to do some of the few things that have helped us cope while being in the hospital: we visited the train display, walked outside to the court yard and fed the fish, then had Ben and Jerry's. After that, we headed back to our room for some much needed sleep. During all of our hospital stays we have learned how to speak up for Will's needs a little better. When we asked the nurses about what would be happening through the night, we were told a ridiculous amount of times they would need to wake him for medicines that (in our opinion) were not necessary. We tried to very clearly and nicely explain Will's need for sleep, and that we didn't want him awakened for anything that wasn't absolutely necessary. We've almost always had great nurses at Vanderbilt, and that night was no different. They were very respectful and passed the word along to the doctors caring for Will. Will did need antibiotics throughout the night, but the nurse who did this was amazing at coming in as soon as the pump started beeping, and sometimes before it started. So impressed with her!! And thankful for all the ones like her! Unfortunately over the past 48 hours, Will had just not gotten the necessary amount of sleep that his brain needs, and he awoke at 4:30 with a seizure. Thankfully it ended with no need to administer the rescue medicine.
The next morning, we met with the resident neurosurgeon who gave us the ok to go home, and continue the antibiotics at home. Feeling a little overwhelmed with medicine delivery times and a schedule of medicine that dictated preciseness, we headed home. But first we stopped on the 6th floor. While there I had checked Kelsi Caten's caring bridge website and found out that she and Rosanne were there. Fearing to wake anyone by calling, I went to just drop a note off at the nurses' station. Amazingly as the elevator doors opened up to the 6th floor, I saw Roseanne! We were able to talk for a few minutes about Kelsi's and Will's very different medical issues (Kelsi has been battling cancer). I have so appreciated Roseanne's strength as I've read Kelsi's website. It is always nice to visit with someone you love and respect even if it's just for a few minutes. I'm so happy it worked out that way. That I actually got to deliver my message myself.
Upon arriving home, I noticed that the nurse who discharged us didn't quite give us all the information we needed about when to administer Will's next dose of medicine, but once we got that cleared up (just a minor setback), we were doing pretty good. Will's medicines were vancomycin and meropenem. The vanc was taken every 6 hours and the meropenem was every 8. Getting used to that schedule was a bit tough, but Patrick and I make a great team. We did 6, 12, 6, 12 for the vanc and that usually took an hour long to empty. The meropenem was 7, 3, and 11, and it only took around 30 minutes. I liked that one a lot better. The other thing about the medicine was that it had to be kept in the refrigerator, but administered at room temperature. So an hour before the dose was to be given, we needed to set it out. It was very time and thought consuming process, but we were thankful to have this as an option so we could be home instead of in the hospital.
Those 2 weeks of course seemed like they dragged on and on. Patrick and I got very little sleep. But they ended, and we survived. The infection is gone and we are back to our "normal." And I am so very happy to be home and see both of my boys doing very well. We have Many many things to be thankful for.
Posts
