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!

 

Posted in Uncategorized | Comments Off on Chiari Update


Aurora Pride Parade 2019

My kids and I had a great time at the Aurora Pride Parade last weekend! I brought my real camera since we were on the sidelines and I knew I would be able to take a lot of photos. For the big Chicago Pride Parade at the end of June, we are marching in the parade with MacGyver’s company so I probably won’t be able to document that event in photos quite as well. The Aurora parade lasted just over an hour and was such a fun celebration of equality and joy. Here are some highlights.

Posted in Personal | Tagged , , Comments Off on Aurora Pride Parade 2019


Keep Calm & Conquer Chiari

This is the first spring in 8 years that I am not posting softball photos of my daughter Gracie. She is actually on a medical leave from softball and PE, and she also had to leave the job she briefly held at Jewel back in January and February. She is a teenager and I just want to state that this update has been posted with her permission. Here is what has been going on:

Gracie was diagnosed with a Chiari Malformation years ago and has been asymptomatic for it her entire life until this past January. You can google Chiari Malformation, but in simple terms this condition results when a small part of the brain extends downward into the space that is only meant to house the spinal cord. In severe cases, a Chiari Malformation can result in pressure injuries to the spinal cord because the brain essentially “plugs the hole” in the skull and the cerebrospinal fluid cannot circulate freely. Because of that risk, Chiari patients who are not showing symptoms are still monitored periodically via MRI. Gracie has been fortunate to have great care at both Seattle Childrens Hospital and Lurie Childrens Hospital in Chicago over the past few years to monitor her.

Info-graphic courtesy of www.conquerchiari.org

Her neurosurgeon back in Seattle told us that 25% of Chiari kids who never had symptoms will start showing them after a concussion. Gracie had a pretty serious concussion in March of 2018 during a high school softball game when she collided at full speed with another player as they were both running for the ball. She then hit her head pretty hard again in December of 2018, though she did not seek medical attention then so we don’t know for sure if that was a second concussion. We are assuming the concussions were the change that sparked her Chiari symptoms.

Chiari Malformation is an invisible illness so if you see Gracie, you might not think she is sick. She goes to school, she does her homework, she hangs out at Starbucks with her friends. She just can’t exercise or play sports right now. Minimizing physical strain and physical effort keeps her symptoms under control, however it doesn’t take much for her to bring on dizziness, severe sharp exertion headache, and nausea. And to make things worse, telling a normally very physically active kid to lounge around and not exercise for months doesn’t do anything positive for their mental health.

Gracie will be taking her finals a week early so that she can have Chiari decompression surgery at the end of May, then have the summer to recover as needed. The decompression involves removing a section of skull and potentially expanding the dura (the casing around the brain) with a patch. She may also need a C1 laminectomy in order to make enough space for her CSF to flow freely. I will be posting an update after the surgery. We can’t wait for her to get back to normal life and to start enjoying the things she loves once again.

 

Posted in Personal | Comments Off on Keep Calm & Conquer Chiari