I think it’s time for an update. Last week was mostly uneventful after her 2 Week Post-Op checkup Monday at Duke. Her surgeon got to see the incision for the first time since we were inpatient and he agreed with the ER’s assessment that it looked good enough not to need to go back in to clean it up. He wanted us to finish her 5 day course of antibiotics and just keep it clean and see what happened from there.
This was a day that started out in a way we weren’t sure we were really emotionally prepared for again. Surgery is scary. We packed and headed to the hospital knowing we’d do what we had to do. But to be told “all is well, go home, follow up with your Dr tomorrow” was just amazing. Such a relief.
And the day just got better and better as it went on. Some of Maddie’s behaviors that we have been worried about were reduced today. And her speech improved. Not back to where it was, but by leaps and bounds over yesterday and the days before. And she has been a little giggle box. Lots of smiling, laughing, giving us kisses.
So today we are simply thankful.
Love to everyone,
Liz, Brandon, and Maddie
This little girl likes to keep us guessing. But I think it’s good news today at least…..we have been at the ER all morning and they are sending us back home. They think her incision looks pretty decent. And her blood counts show no sign of infection. And she’s acting like herself. So they think we should try a different protocol for dressing it, we’ll continue her antibiotics, and we’ll follow up with her surgeon. They just can’t justify re-opening the incision when it looks like it does today. So we are extremely relieved and we hope that the drainage stops on its own soon so that there’s no longer any question as to what is the best course of action.
Well folks we’d love you to keep the prayers up. We’ll be heading into the ER in the morning knowing that the plan is for them to take her back in the OR and clean out inside. Not sure if its infected or not yet. Despite strong antibiotics for 48 hours, the incision continues to drain. So we’ll be putting our princess into someone else’s hands again tomorrow in hopes that they can fix this.
We have had a busy couple of days since I last updated.
Wednesday night, the area in Maddie’s scalp that had previously felt a bit squishy instead felt a little more taut. I had been told to watch for that but wasn’t sure how serious of an issue it was. Luckily, by the middle of the night her surgeon replied to my email that it didn’t mean a middle of the night ER visit. We did, however, end up in the ER the next day to have it checked out because the clinic at Duke couldn’t fit us in. At Duke, they felt it was curious, but after more consulting with her surgeon by phone and various other doctors, it was decided that we should just watch it and it would likely go down on its own. They did also warn me that her incision might open up a little and that it would escape as drainage. So while I was prepared for it, I wasn’t really excited to see it when her incision began draining right at the end of normal business hours yesterday when it gets harder to get seen or get a *quick* return phone call or email. Luckily her surgeon again got back to me with reassurance that it still looked ok (after seeing a photo) and with guidance as to how to clean and dress it to protect it. He also had us start her on an antibiotic today to prevent any type of infection.
Otherwise, things are pretty similar. She is sleeping better, which is a huge plus, and she is calmer than when she was clearly hyped up by the steroids. Seizures are still staying away while she is awake so we are thrilled with that. She has some interesting new behaviors which we are hoping pass soon. They have changed a bit each day but I’m not really sure if I’d say they were getting better or worse. She is smiling and giggling a ton. She hasn’t had to be on any meds for pain or nausea since Tuesday. Her walking has gotten better each day and I’d even venture to say that her balance may be better than before surgery. Although she has talked plenty since surgery, she has not said words in a few days. Words have all been replaced with one syllable that she uses as a response for questions and intermittently all day. It varies a bit, but we aren’t hearing any of her normal approximations.
So there have been some ups and some downs over the last few days, but we are just trying to manage the big stuff and give her time to heal before we push her hard on the small stuff. I am hoping there is nothing else to report about until after her follow up with the Neurosurgeon Monday. We’d really love your prayers that she stays free of infection as this new opening in her incision heals.
Thanks for checking in with us! I’d share a pic but the only ones I’ve taken the last few days are of her incision. Oops, I’ll try to do better!
Love to everyone!
It’s been harder to update from home because Maddie is getting her energy back and naps are not as frequent. In fact, I’ve been napping when she does as she isn’t sleeping through the night right now. Tonight while making dinner, my mom encouraged me to update all of you kind people who are keeping up with her progress. We were discussing what I should say about how things are going and how I am a little uncomfortable about talking about some of it. Things are pretty tough right now. But I just feel so thankful and blessed for how things went last week and for so many other aspects of her surgery and recovery, that it feels funny to harp on the smaller stuff. I just don’t want it to sound like I’m complaining.
We made it home. And we hope this is the beginning of something amazing. Our release however was not because everything is going easily but reflects the fact that our team knows we know how to handle Maddie’s needs and that the hospital is a really tough place for little kids.
At around 5 pm yesterday, Maddie woke from sleep and it was clear that she had turned a corner in some respects. She could hold up her head much more easily. She smiled. She was making normal Maddie faces and responding the way she should to us.
I’ll write more later when it’s less crazy, but we are getting discharged. Woohoo!
Today IS a better day! Yesterday we didn’t have much improvement in anything until about 5 pm so it was a little rough to watch her continue to be so lethargic. It was enough for us to feel like she might be turning a corner. But it was very short lived and then we had a pretty good night’s sleep again.