Tuesday, April 17, 2012


I have a quiet house this morning. Sam went back to school today. It is amazing how quick a child can bounce back. After Friday, my last post, he just got better and better. He is now down to just acetaminophen for pain meds and doing great.



Yesterday we went to the library and got Sam his own library card and a bunch of books. Then in the evening he went to his Cub Scout Pack meeting. He won the boot for best showing what a being a Cub Scout is all about!

Friday, April 13, 2012


What a couple of weeks. I am so tired but got some sleep last night.

Sam had his surgery on Wednesday. the day started with jello for breakfast and 15 minutes before the clear liquid cut off, Sam found a Girl Scout Cookie and took a bite. That delayed surgery from 11 am to 1:45.  Fortunately Dr Healy worked with us and was able to do it later in the day so we did not have to go through the whole process of getting ready for surgery again. Sam and I passed our time with some movies and playing games. Child life was able to bring us Candy Land (which Sam won twice), Connect Four (we both won at that one), and we were almost done with Chutes and Ladders when they came to take Sam to surgery.

Before surgery we had a good conversation with Dr. Healy about the emails I had been sending back and forth with Dr Lindaman in IA and what exactly does Sam have. Dr Healy was already planning on sending specimens to U of MN again. I mentioned Dr. Collins at NIH who has done lots of research on FD and Dr. Healy took his name down. Before surgery started Dr Healy was able to find contact information and called Dr Collins and left him a message. During surgery Dr Healy also prepared a set of specimens to send to Dr Collins also. Last I heard, Dr Healy still had not heard back from Dr Collins but is going to follow up and it. Got to love a doctor you can talk with and who will take information you bring to the table and act on it!!!

During surgery Dr Healy found the lesion to be very fragile, like and egg shell he said. It took almost nothing to break it and clean it out. he feels Sam would fractured that very soon had nothing been done. Dr Healy also cleaned up the scar on his right thigh that had keloided. It went very well, Sam was sleepy afterwards and it was 5:30 before we went up to his room. He turned into ravenous boy and consumed 5 Popsicles, chicken noodle soup, a sandwich before finally falling asleep again for the night.

It was a fitful night with meds and pain every couple of hours and trouble finding a comfortable way to pee. By morning we were on top of pain and he was doing better. We saw PT at 10 and were on our way to pick up his wheel chair by 1:30. His wheelchair. that seems like it deserves a post of its own but I will likely not get that far. It is so surreal to get a wheel chair for your child.  This one his special ordered and built for Sam. It is not a rental.the process began in January. The $6000 ticket will go to insurance.

We got some more sleep last night. The difficult first bowel movement began giving tummy aches last night and making him generally grumpy. That continued into this morning. He finally moved this afternoon and promptly fell asleep again all snuggled into the bean bag with his newest blanket from the hospital.