Rare Mama Life... Surgery Edition

So we are T-minus 6 days until Hailee's next surgery and I am partly in denial that it is actually happening that soon because I don't feel ready. I never do. Each of her surgeries has given me a unique flavor of anxiety and this time is no different. 

Hailee's first surgery in Feb 2019 - a partial laminectomy to decompress her spinal cord - was by far the most terrifying. We were coming fresh off her rare disease diagnosis and the news that her spinal cord was at risk. She was in a 23/7 neck brace until her wonderful neurosurgeon was able to shave off part of her skull and some of her C-1 vertebrae to give her spinal cord more room. Yikes. Every minute of waiting was agonizing. I remember sitting in the cafeteria so grateful to be working on my lei po'o (head lei) for hula to keep my hands and my mind busy. Afterwards, Hailee's surgeon told us that her case was in the top 5 worst he has ever seen and that she was one bad fall away from paralysis. That left me SHOOK for awhile. But when she woke up and immediately said "my neck doesn't hurt anymore" that of course made everything worth it. [SIDE NOTE - her neurosurgery happened to take place during a snowstorm as well as the aspergillus outbreak at Children's so she had to have another MRI and spinal tap (her 4th?!) to make sure she wasn't infected.]

Surgery #2 was another necessity, though by far the least stressful. Hailee receives her weekly medication via infusion and her little veins were dancing around too much, making it difficult even for the infusion nurses to find them. At her first enzyme replacement therapy session (that's what it's called when she gets her meds), the charge nurse told us we'd want to get her a port ASAP. And in April 2019 that's just what we did. It was a quick in and out surgery and Hailee's port has made it SO MUCH EASIER to give her the medication she needs.

I dreaded surgery #3 - a bilateral guided growth knee surgery - for a loooong time. It was supposed to happen during the summer of 2020 but wouldn't you know a pandemic descended upon us just a year after her diagnosis and so her surgery got pushed to October. Knock-knee and guided growth surgery are common for Morquio patients and so Hailee had surgery to install screws and plates to help her legs to grow straight and cause her less pain. I was terrified of how she would recover but Hailee is a champ. The night of her surgery she was pushing my hands out of the way and insisting on walking to the potty herself. It was terrifying but she did it and she recovered beautifully. We are so fortunate to live in Seattle and have Dr. Klane White as her surgeon - he is one of three orthopedic surgeons in the world who are considered experts in MPS. Right now we are  waiting for her legs to grow and straighten more and then she will get the plates and screws removed. 

And so here we are at the doorstep of surgery #4. Next week Wednesday, Hailee will have a bilateral femoral hip osteotomy. Dr. White will be taking some bone from her femur and adding some plates and screws to reshape her hip into its socket (something like that) because she's already partially dislocated on both sides. Poor girl. It will a long surgery at 4 hours and she will likely need a blood transfusion because her body is so little. I am definitely nervous about how long the surgery will be and hoping I don't lose my shit while we wait. And then Hailee and I will have a 4-night slumber party in the hospital, which hopefully gives me enough time to learn from the nurses and figure out how to help her do things and manage her brace. She won't be able to put any weight on her legs for about 6 weeks and of course I'm terrified of hurting her and don't want her to be in pain. Or bored. And then somehow right after that school starts again and I have to let her loose to 1st grade, which also terrifies me. 

I know in the end it will be fine and that these pre-procedure anxieties are normal and will continue to visit me every time she needs another surgery. Over the years as I have dealt with anniversaries of my mom's passing and all of Hailee's medical things, I have learned that I tend to have a shit ton of anxiety leading up to major events, only to realize that the actual "thing" wasn't nearly as horrendous as I imagined. So I am writing to process but also to share because otherwise how will anyone know what it is like? Hailee's surgeries and all the anxieties that come with them are just part of this Morquio Mama life.