Archive for June 2017

Ready for recovery

2017-06-02 09.07.50

Miriam was released at 10:30 this morning. She woke up chatty and cheerful, and other than an unpleasant bandage change kept in good spirits. We took a quick trip to the playroom, and were able to attend a children’s prayer service in the chapel before heading home. She’s glad to be home with her sisters and grandparents and her own bed. Recovery will probably take a little longer than usual due to the size of her incisions, but the swelling on her shoulder has already disappeared.

2017-06-02 09.11.12

Expansion and Cradle Exchange

Miriam was in a good mood as usual for our early arrival at the hospital this morning.

2017-06-01 07.21.49


After we got her undressed, we took a look at the spot where the end of her rod was protruding, and it was significantly more prominent than even a week ago. It is the oval-shaped lump on her right side, halfway between her spine and shoulder blade. (The smaller, bonier lumps on her lower back are also hardware attachments, but they always look like that and are secure.) We brought it up with Dr. Williams, who promised to take a thorough look at it in the OR.

2017-06-01 07.06.45

2017-06-01 07.06.49


On the left, here is the x-ray from her pre-op visit to his office last week, with last year’s x-ray on the right for a comparison. You can see how much less bone is inside the top of the long rod in the newer image, and how much closer it is to the surface of the skin.

2017-05-23 14.22.33

After the operation, Dr. Williams let us know that her hardware had not come loose, but it had deformed the rib so much that the attachment cradle was aggravating the overlying skin. The swelling was a bursa (a fluid-filled sac) that her body was forming over it in an attempt to protect itself. He knew this wasn’t a sustainable situation, so he removed the cradle and attached a new one to the next rib down. This required some searching for a suitable spot, as the ribs in that area have largely fused together due to the stress of the hardware. Because the distance between attachment points was shortened, he was able to retract the rod a few notches. This means that instead of replacing the entire rod, we have actually gotten back more time with this one and we can wait longer before eventually replacing it. He was also able to expand her rib-to-rib device as usual.

Because of the need to remove and replace the cradle (and to find a new attachment point), Dr. Williams had to make a large incision around her shoulder blade. This was the biggest incision since her initial implant. Knowing it would be very painful, he attached an On-Q Pain Pump to the area. It bathes the incision area with anesthetic to reduce the nerve activity so less pain medicine is required. He let us know it would be attached for at least 24 hours, so we were in for an overnight stay.

I took the opportunity to thank Dr. Williams for listening to our concerns and taking the time to follow up with them in the OR. We have heard several horror stories recently of other kids similar to Miriam who have developed complications which could have been minimized if caught early, but which have turned into catastrophic events because doctors ignored parents’ concerns. After I thanked him, Dr. Williams answered, “I always listen to moms!” As any parent can tell you, especially of kids with special needs, we really do know our kids better than anyone else, no matter what their expertise, and we really appreciate having a doctor who trusts us.

Unsurprisingly, the recovery room wasn’t easy for Miriam today. She had a hard time getting comfortable, and the medication was giving her double vision for a while. Sprite and a grape popsicle made things a little better.

2017-06-01 12.17.26

Once we got up to a room at 2, she was ready for lunch. She ate normally, enjoying pasta and meatballs and Coke for a special treat. Soon we had visitors: her wonderful Godmother, than her amazing grandparents (visiting from New York) and her sisters. And of course, balloons and presents.

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2017-06-01 15.23.08This has definitely been a harder day one than most of her other procedures. She has struggled more to position herself, and despite being very tired didn’t manage to get to sleep until after 11. Thankfully she had lots of new activities and Mary Poppins on the DVD player to pass the time and distract her. The plan is to go home tomorrow after the Q-ball has run its course, as long as everything still looks good. I know she’ll sleep better in her own bed, and her sisters will keep her mind off the pain much better than a TV. She is hoping to make it over to the playroom here before we go, because otherwise our stay wouldn’t be complete.

Please pray for her total healing, and for her comfort over the next few days. We are so blessed to have her grandparents here to help, and her other pair of grandparents coming on Saturday. No matter what trials she endures, Miriam knows she is loved and in God’s hands. Thank you.