I wanted to give a quick Daisy update for all of you who have been asking and following our progress on social media. You have been the most loving and supportive tribe I could ever ask for – your kind messages of encouragement, your prayers and your love are fueling us.
On Monday morning we took Daisy in for her surgery at CHOP with my wonderful mom in tow. We were able to be with her as they ran final vitals and administered the initial sedatives. She has us laughing as she mumbled, giggling, through drool and swayed from side to side. She was sent to the O.R. around noon and was in surgery for four hours as there were many procedures scheduled within the operation.
Post-surgery, Daisy’s physician took us into a private room to debrief. As he explained it, the surgery was set up for success in every way it could have been: he had great visibility, the muscle tissue was cleared to make way, incisions were clean, blood flow was normal. However, when he got into the hip area to work on joining the hip and the socket, he discovered there was almost no bone forming a socket at all.
The goal of the surgery had been to join the femoral head (top of the femur) and the socket so they would grind against each other and the socket would expand and mold to the femur to work as a hip is intended. However, when there isn’t really any bone forming a socket, potential successful interventions become very limited. Our surgeon placed a metal pin through Daisy’s skin, femur and socket to hold them together in the hope that maybe – just maybe – in four weeks the little bone that is there could form into enough of a cup to be a functional socket. The challenge is you can’t leave a pin in for much longer than four weeks and it’s hard to know how much bone development can happen in that amount of time. The doctor closed the area with dissolving stitches and cast her from the chestbone down excluding her feet and diaper area to ensure that the hip is protected and the pin stays in place.
On May 25, the pin will be removed and Daisy will be recast for another four weeks with another two weeks following in a brace. If we find after that time that development was aggressive enough for the socket to become functional, the surgeon will repeat the procedure on her right hip. If the intervention was not successful, we will cease surgical efforts and have to make peace with Daisy having two dislocated hips, one slightly higher now than the other. It is likely that she will walk with a limp, be unable to walk or run long distances and may have some limitations with respect to athletics. When she is in her twenties and has stopped growing, she can then have a full hip replacement.
We are disappointed and caught off-guard as this outcome was not one we were prepared for. The surgeon never mentioned it was a possibility because it is that rare for a patient to have no socket bone at all. Daisy is – as always – in the 1% of patients who don’t fit the normal course. With that said, we are trying to stay optimistic and think about the positives. In the scheme of things, a limp and not being able to run long distances is not the worst burden. We were surrounded by so many families at CHOP who are managing medical crises and lifelong struggles so much more tragic than anything we have or will face with Daisy. We are so grateful that Daisy is alive and well for the most part – smart, kind, funny, loving and growing into a person we are so proud to call our daughter.
Daisy was discharged from the hospital on Tuesday after an overnight in the PACU. We spent several hours with physical therapy first fitting Daisy for a special car seat then practicing how to clean the cast, change diapers, administer her medication schedule (which is an aggressive mix of Oxycontin, Valium, Motrin and Tylenol) to ease her pain and keep her comfortable. As always, our experience with CHOP was a wonderful one – the staff were attentive, compassionate and patient as we asked our laundry list of questions and voiced our concerns. Daisy had a bed with a sunny view and could even order room service from a very extensive menu!
Washing hair has never required so many hands!
We are adjusting to life at home and getting the hang of our new routine. The cast is the biggest adjustment – it’s very large and very heavy, and Daisy has to be carried and moved a certain way. Changing diapers is a complicated, messy process involving pillows for propping and diapers on the inside and on the outside of the cast. My mom is here this week and has been a massive help in keeping Daisy entertained, clean, fed and happy. For the following two weeks, Nick’s mom Julie Anne will be here, then my mom returns for the last week before our new nanny starts work. I will be mostly working from home for the next few months (with a day or two in the office per week) which is proving necessary given the lifting and carrying involved. This is keeping me fit and strong in the last months of pregnancy which is great!
Off for a walk to the ice cream shop in Daisy's wagon!
I am incredibly grateful for our families and friends who have encircled us in love and support. When my mom isn’t playing with Daisy and keeping her mind engaged, she’s out in the garden tending to flowers or unloading the dishwasher. She even bought Daisy a beautiful, colorful new rug and accessories for her room that make it a bright, beautiful place to rest. Nick has been, as always, the best partner I could possibly ask for in times like these. He does all the heavy lifting when he is home, building special beds, chairs and playspaces to keep our girl comfortable and positioned right. He carries Daisy around the house dancing and keeps her laughing like only he can. My Dad bought Daisy a special handmade custom Hip Spica Chair so she has a work surface for arts and crafts and my in-laws bought her an embroidered bean bag chair for lounging and reading. Every day we open the door to packages containing sticker books, toys, care packages and mail full of letters and cards. Our social media accounts are overflowing with kind words of support and encouragement.
Thank you all from the bottom of our hearts for being on our team. Please keep Daisy in your prayers – we hope hope for a miracle but we will get through whatever challenges are sent our way with the love from all of you ♥
PS: for those of you asking what you can do, a contribution to CHOP in Daisy's name is always appreciated. Donations fund research which just might help doctors find a new solution for Daisy's circumstances.