Chiari Update

I am happy to report that Gracie’s Chiari decompression surgery and recovery went so smoothly, I am just amazed! It’s been 4 weeks and she is basically back to her normal self. If you google Chiari Malformation surgery, you will see some pretty frightening photos of shaved heads and huge stapled incisions. Chiari patients actually refer to themselves as “zipperheads” because of the incision scar but Gracie’s incision is so flat and clean, it looks like a plastic surgeon closed her up!  Her surgeon, Dr. Tadanori Tomita at Lurie Children’s Hospital, only needed to shave a very small narrow strip on the back of her head for the surgery so her hair totally covers it up.  She had her surgery on a Friday and went home from the hospital on Sunday. She has no headaches, no dizziness, and no nausea. She was given clearance by Dr. Tomita during her 3-week follow-up appointment that she can return to activities as tolerated with the exception of contact sports. She unfortunately won’t be returning to softball this summer because she cannot risk colliding with another player during a slide or other instance. She was able to find a part-time job and is currently enjoying her summer both working and hanging out with friends. Yay!

Gracie had a posterior fossa decompression in late May at Lurie Children’s Hospital. This involved removing a piece of bone at the base of her skull. She also had a C1 laminectomy to make a little more room. Lastly, she had her dura scored to allow a bit of expansion. Gracie asked Dr. Tomita to save the piece of skull for her (ha!). He looked at her like she was a little crazy but he was kind enough to take a photo of it for her. He photographed it next to a ruler and the piece of skull he removed is about an inch and a half long.  Gracie was still groggy from anesthesia but she was still able to teach Dr. Tomita how to use the Air Drop feature of his iphone to pass that photo along to us, lol!

I want to give a shout out to everyone we dealt with at Lurie. I am so very thankful for the awesome care Gracie and our whole family received there. First and foremost, Dr. Tomita is just an absolute master surgeon and we cannot thank him enough for creating and executing the successful treatment plan. From the doctors and nurses to the cafeteria staff (no joke), everyone at Lurie works so hard to make things as comfortable as possible for both the child and the parents.

On the morning of the surgery, a Child Life Specialist came to talk with Gracie to make sure she understood the process of what was going to be happening leading up to the surgery and during the surgery. She had photos on her ipad and offered Gracie a stress ball to squeeze while she waited.  I was so impressed to see how the Lurie staff could quickly adjust their communication style to connect easily with both toddlers and teens. The Child Life Specialist offered to go into the OR with Gracie until she fell asleep. It was so reassuring to have a warm-hearted person focusing solely on Gracie’s  comfort and peace-of-mind in a situation where we as her parents couldn’t physically be present.

The floor nurses at Lurie went above and beyond to make Gracie comfortable. Her weekend day nurse was so kind and nurturing. She and Gracie got along so well that she rolled up the legs of her scrub pants and jumped into the shower to help Gracie wash her hair for the first time post-surgery. We also had no idea that a hospital stay would come with entertainment, but a volunteer magician stopped by and gave Gracie a bedside magic show. Gracie also enjoyed perusing the cafeteria menu and ordering “room service” up to her patient room. The cafeteria food was amazingly good and the staff would always ask if they could send up coffee or tea for MacGyver and I.

Each patient room at Lurie is a private room with a pull-out single bed so that a parent can spend the night with the child if desired. There is a parent lounge at the end of the hall of each inpatient floor with couches, tables, a small kitchenette, ice and water, labels to label any food you want to store in the fridge, a bathroom and private shower. Lurie is located in one the busiest parts of downtown Chicago, but several of the hotels nearby have discounted Lurie rates for families. We did get a hotel room at the Hampton Inn a block away from the hospital, and it was nice to have a “home base” where we could go shower and sleep. Parents have 24-hour in and out access to the hospital inpatient floors, so can come and go as needed. Lurie also validates overnight parking down to a reasonable $15 per 24-hour period.

I posted a bit on Facebook about Gracie’s chiari journey and was contacted privately by two friends who had friends whose kids were recently diagnosed with Chairi. I ended up talking to both of those parents and therefore thought that maybe I should just share our experience on my blog in case it can help anyone else. Getting a Chiari diagnosis can be a scary thing, but I hope that sharing Gracie’s great outcome can put other families’ minds at ease.

Here are a few photos, shared with Gracie’s permission.

Dr. Tomita marking the site pre-surgery.

One day post-op, taking in the beautiful city and lake view from the 19th floor.

A bedside magic show.

Taking a little ride around the hospital.

Back at home, relaxing with some Netflix and avocado toast.

And here are some incision photos. No, that’s not a color shift in the photo. She DID actually dye the back of her hair green!

 

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