We are coming up on the 6th anniversary of Zip’s FOP diagnosis. FOP causes muscle, tendons, and joints to turn to bone. It eventually locks the patient in the position of its choosing. There is currently no cure for this very rare condition that is 1 in 2 million, or 800 cases worldwide.
The community is small, but oh, so strong! I have watched time and time again as the small group of families support one another on good days and bad.
If you are a friend of the ZipperQ facebook page, you may have seen me share some stories about our friend Erin in Washington. She has had a rough go the past bit being in the hospital for the last six weeks. I have attached her mom’s most current update and it doesn’t look like things are going to get too much easier any time soon.
They are looking at a long stay in the hospital and Erin is requesting postcards to keep her spirits up. My ask is that you pick up a postcard and send to Erin to show her Claremore’s support. I know many of us are doing vacations and day trips with our kiddos this summer and picking up a postcard to send to Erin would brighten her day!
On a side note, she loves turkeys! Anything with a turkey on it would just be a bonus!
The mailing address is at the bottom of her mom’s update.
We had a meeting on Thursday to discuss Erin’s treatment plan. Basically there are two options:
- Try to wean her down on the BiPAP so she can go home. However the risk is she has zero reserves to help her body fight if she gets sick again. With this option we will be back to where she was on April 28th – scrambling to get intubated and it took a herculean effort; not guaranteed to be as successful. Quality and length of life would be limited. Any cold or infection would be life-threatening.
- Tracheostomy. With Erin’s complex airway, a straight forward trachesotomy is not possible. We saw a virtual 3D model redendering of Erin’s anatomy around the proposed trach site. A successful tracheostomy would allow proper lung ventilation and medical professionals would have access to her airway.
Definitely a very difficult meeting and even more difficult telling Erin.
Where are we now?
Both options have huge risks involved. Our otolaryngologist needs additional time to prepare for the tracheostomy. So Erin will stay at SCH to keep her safe and healthy for surgery. The procedure will not happen before September. Then she will stay hospitalized until she is safe to go home (Alan and I are trained on how to care for her, in-home health care is established, and our home will be prepared for her arrival).
Good news is Erin is back to her spunky, sassy self. Daily naps and regular breathing therapies keep her lungs recruited.
After my convo with Erin about the trach, we came up with an idea to help her keep spirits up. She got so many get well cards and it was awesome. She also got two postcards. Erin would like more postcards. Where ever you are.. US, international, small town, large metro….Going on vacation? Even local! Please pop a postcard in the mail to her. We went through a bunch of cards she received while she was semi-sedated. It was like getting mail all over again.
C/O Seattle Children’s Hospital – FA5.305
4800 Sand Point Way NE
Seattle, WA 98105
This has been her biggest challenge and it will get harder before it gets better. We don’t give up that easy. Thank you to all of you for your support!
Thank you, Claremore, for your continued support of ZipperQ, the IFOPA, and our FOP friends worldwide!