Nick is having the foot portion of his fixator removed tomorrow and some additional wires removed and a half pin added and possibly a half pin removed that is bothering him so he might need an additional half pin. Yes that was a completely grammatically incorrect sentence but it is what’s happening. He’s mentioned his nervousness to Marilyn and she offered to take us on a little tour of the new children’s hospital. It is awesome! Nick is not as nervous and it was a wonderful distraction. Now he’s got something to look forward after surgery! He can’t wait to get back to that playroom!
I can’t post video on this blog yet but I have posted some videos on the International Center for Limb Lengthening Facebook Page and on the Fibular Hemimelia and Limb Lengthening Awareness Facebook Page.
Touring was a bit emotional for me. I realized how my perspective is so different from your average parent because this will be Nick’s ninth surgery. I know there are children who have gone through so much more than Nick and moms who might think nine surgeries is nothing but it feels like quite a journey. There were so many familiar faces in this new gorgeous setting. Even the hallways are bigger. There is a space for parents to sit and relax. Sometimes you just need a moment out if your childs sight but you dont want to leave the unit or you dont want to cry alone in a restroom. I’ve been there and its rough! Just having a place to “be” is wonderful!
Compared to the usual hospital room the rooms are enormous! And it’s all so pretty, bright, colorful and clearly created with children and families in mind! It’s no wonder considering it wad created with input from the staff and patients. Laura Cohen, a child life specialist run the show in the playroom and it shows! I found out today that she has been at Sinai about as long as I have been alive! I was shocked that she had been there so long but looking around the room you could see a lifetime’s worth of experience coming to life. No one could know better than Laura what our kids needed. She has always impressed me with way with the children and now I am so grateful to her for helping to create a place my boy is looking forward to going to. And honestly he looked forward to the old playroom but this is an whole new kind of excitement.
Because I did so much research for the job as a patient and family centered care coordinator I applied for a few months ago I could totally see the concepts of patient and family centered care come alive as we toured.
I’ll write more about Nicks surgery tomorrow. Thoughts and prayers are very much appreciated. Dr.Standard said Nick will be the very first surgery. It will probably start around 8am. Having an appointment today worked out great. Dr.Standard is so calm and kind. His confidence also made Nick feel good. Eight years later we are still so grateful to have him care for Nicholas.
I know we are in the best possible place for a kid with Fibular Hemimelia. There are so many amazing people here and now they have an amazing facility check out The New Herman & Walter Samuelson Children’s Hospital at Sinai