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November Update

Anthony had his follow-up appointment with his surgeon yesterday.  The only problems we’ve had are with his digestive system, both ends… But nothing we can’t manage.  She did an x-ray of his spine and was very please with the correction she got. “20%, that’s my personal best”, she said!  How awesome is that?:-)

Here is the new x-ray:

His incision looks great too, all healed:

She said that technically it takes a full year for the spine to be totally healed.  The bones are quite “squishy” now, so we have to be careful moving Anthony and we have to be sure to keep his spine straight and not bend his hips more than 90 degrees.  She said we should be safe after 3 months, even better after 6 months.  Loooonnnngggg recovery time!  He can go back to school on November 20th.  She did ask if we wanted a body jacket for school, but I thought it would be tougher handling him with a body jacket.

Here is a photo of Anthony and his surgeon Dr. Shelton:


Anthony’s Progress

Anthony continues to make wonderful progress! He no longer needs any pain medication and his incision is pretty much healed. One interesting problem that has come up, his reflux is much worse after the surgery. I assume this is because his posture is so different now or maybe his fundoplication loosened a bit. Fundoplication is a surgery he had years ago to prevent reflux.

Fundoplication: the part of the stomach that is closest to the entry of the esophagus (the fundus of the stomach) is gathered, wrapped, and sutured around the lower end of the esophagus and the lower esophageal sphincter. (The gathering and suturing of one tissue to another is called plication.) This procedure increases the pressure at the lower end of the esophagus and reduces acid reflux.

The surgeon said this problem is common after a spinal fusion. I will ask her more about it when Anthony has his follow-up appointment on November 2nd. In the meantime, he has been started on Zantac twice a day.

Yesterday, a bunch of Anthony’s teachers came to visit him! Anthony was so happy to see them all!


Anthony’s Incision

Anthony is so happy to be home! I talked to his surgeon today, he does not have to be seen again until next month. His sutures are subcutaneous, so they don’t need to be removed and the steristrips that you see on his back will just fall off (some have already). No school or therapy until at least after his follow-up appointment on November 2nd. So, time to rest and heal.



Anthony is so happy to be home! He did amazingly well, much better than we expected. We are so please with his doctors and aside from a couple of minor issues on Friday, the nursing staff was excellent. We already knew that his doctor was good, as she operated on Eric several years ago and did an outstanding job. We also knew the PICU was very good having spent time there with both Eric and Aaron in the past, and we also know a couple of the nurses who work there. In fact, two of the nurses were from the Memorial NICU and took care of the twins back in 1993! We were concerned about the pediatric floor. However, it seems they have improved in the years since our last stay. So, an all around positive experience at UMass Medical Center.

Anthony will have a follow-up appointment in the orthopedic clinic next week. They will remove his sutures and let us know when Anthony can return to school. For now, he can get up in his chair as tolerated. We need to change his back dressing once a day. We still need to get his feeding and bowel routine back on track. He can have Tylenol with codeine for pain and valium for muscle spasms as needed. He will be seen by visiting nurses, which is really not necessary, but routine.

Now, I must go and catch up on life!


Update – Monday

They finally restarted Anthony’s g-tube feedings at 9am this morning. I’m hoping that if he tolerates his pediasure he can come home tomorrow. He got up in his wheelchair again today and we took a walk outside. It’s a beautiful Columbus day here in New England, the leaves are changing, the sun is shining with deep blue skies and about 72 degrees.

The orthopedic doctors were in this morning and said that his x-rays look good. He said what they do in the OR is attach wires to each vertebrae, then place the rod and tighten the wires to the rod to straighten the spine. I remember the surgeon telling me that one of the wires broke during the surgery! I can just imagine the amount of force it would take to move a spine into alignment! And it’s no wonder there is so much pain associated with this surgery. They checked his back incision and one of the docs said he’s never seen so many steri-strips on one person. The incision goes from the back of his neck down to his buttocks. I assume we will have to bring Anthony back to the hospital to have the sutures removed sometime soon.

So, today was a quiet day. Rich has been doing the night shifts with Anthony and when he gets home, I head out. It’s been tough this long weekend, with no school. But Aaron has been a big help watching Eric, so Rich can get some sleep. When I got up this morning Aaron was sleeping in Anthony’s bed. So sweet, he really misses Anthony and worries about him. It has been a tough week and we will be glad to get Anthony home and get back to normal (such as it is for us).