Pails, Nails and Details

Today was a full day for Haley. She enjoyed visiting with some friends and was surprised by her good friend, Elyshia, who arrived with arms full of gifts. She lavished Haley with movies, flowers, snacks, a book, and lots of comfy clothes for the hospital. I said it was like Christmas in June. Haley said it was more than she usually gets at real Christmas. (She's right!)

This is a picture of Haley and Elyshia (Ellie) and all of the presents:

And Haley with one of her gifts, Hunger Games socks:

Later we took Haley out to the deck and washed her hair. We transferred her from the wheelchair to a metal deck chair right outside of the kitchen window so that we could pull the spray nozzle out the window and rinse her hair. We scrubbed her head with our fingernails and washed and conditioned it twice. She said it felt so good. Then we got really creative and decided to give her a bath on the deck! We held up towels and filled up pails and pails of water so she could scrub herself. It was quite an ordeal and it resulted in a big pile of wet towels, but a clean, happy Haley. I wonder what our homeowners association would say if they knew! Ha ha.

While we were helping Haley with her bath, we all noticed that she had a lot of dead skin on her feet and that they looked awful. Haley decided that she wanted to use the gift card she received from her aunts for our local nail salon. She said that she was game for a trip into town, so we hoodwinked her dad into accompanying us. (We needed his brawn.) So off we went to get our nails done. Larry (the saint) waited patiently while we got our nails done. It was such a fun day of pre-hospital pampering. Here she is getting her nails done:

Lastly, Haley has asked me to post about the details of her surgery because people have asked her what she's having done. So, I will try my best to let you know what the plan is (I promise not to get too technical or too gory.)

Dr. Henderson says that her head is not correctly sitting on her spine. When they did imaging studies, he took measurements of certain angles, and they are WAY off. He believes that this is what is causing all of her neurological symptoms (migraines, nausea, vomiting, and passing out). She has a problem with her connective tissue not having enough collagen (Ehlers-Danlos syndrome). This has presumably caused a weakening of the supporting structures in her neck resulting in brainstem compression. So the surgical plan is to fuse her cranium to her first two cervical vertebrae. Dr. H will place screws in the lateral boney"wings" (my word) of the top two vertebrae. This is delicate because if you've ever seen a model of the spine, you know that the top two "wings" are much smaller than all of the other "wings". He said that in EDS patients, these are even smaller and more delicate than in the rest of the population. They are so small, in fact, that he has only one chance to get it right. There is not enough bone for another shot at it. Also, there are two critical arteries that run just behind these wings. If they are damaged or cut, it would mean stroke or death. (So, so scary.)  He will also put a plate at the base of her skull. He will then use x-ray to make sure her head is at the exact correct angle. Then he will take a CT scan and measure all of the angles again. Once they are perfect, he will attach the screws to the plate by two bent rods. He will need to take a piece of her rib for one side of the screws and a cadaver rib for the other side. He will take some bone marrow from her hip and put it with the ribs to encourage bone growth. (Without covering the screws with bone, they are likely to get loose and cause problems.) He will then take cadaver bone chips and her bone marrow and fill in the place between the bars near the plate. This is to strengthen it and make it secure. The surgery is expected to take 5 hours. He has done this surgery over 200 times in the last 20 years. We feel very comfortable with him and have been in touch with scores of his patients via facebook and they sing his praises. Many say he saved their life. So there you have it. Please continue to pray for her and us. I have tried to imagine how it will be to sit in the waiting room for five hours waiting for some word. I really need prayer at 7:30 on Wednesday morning. Thanks, friends.