Ups and Downs

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!

2 thoughts on “Ups and Downs

  1. You definitely have our prayers! I think of you guys often and the courage you all have. Maddie, like our Anna. seems to want to write their own medical journals! We learned many years ago to expect the unexpected- which we are doing now.
    We will keep praying as long as Maddie needs us! 🙂

  2. Hang in there. Things are gonna get better and better. Doubling the prayers. Love you Maddie.

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