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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:


Update – Saturday

Anthony continues to make progress. Last night, an IV nurse was able to get a regular IV into Anthony! Rich said she was really good and took her time and spent about 45 minutes checking every vein until she finally picked one out. So, he now has access which is a good thing and something the doctor felt he really needed. I’m just glad he won’t need a central line! He is getting IV fluids again and can get IV pain medications if needed.

We had a good day today. It was nice and quiet at the hospital, being a holiday weekend and Anthony had a very good nurse and an aide who did a really nice job scrubbing him from head to toe. He got up in a chair for the first time. Well, sort of a chair. They call it a “cardiac chair”, but it looks more like a stretcher to me… but he tolerated it well. And he was able to go for a ride and get out of his room for a while.

He also had his back x-ray done today, amazing photos below – photo includes four films – the left two are a lateral view, top and bottom. The right film Anthony is on his back, upper and lower back straight on. He looks like a bionic boy!

He tolerated the x-ray procedure well and he seems to be having less pain. He has not needed IV morphine today, just Tylenol in his g-tube. He has good bowel sounds and he is getting his usual pediasure via his g-tube. But he is getting more distended; time for a bowel movement I think.

Here is a photo of Anthony with a musical vibrating bug that Nana sent him from Arizona along with a nice card. Thanks Nana! Anthony loves it and the card is hanging over his bed:-)


Update – Thursday

Anthony is having a good day. The plan was to send him to the pediatric floor today, but again they were unable to start a peripheral IV (after sticking him four times). They don’t really want to send him to the floor with his central line and he still needs an IV. His belly is a bit distended and hard and he has no bowel sounds yet. They can’t start his G-tube feedings until his bowels wake up.

He did not have a fever last night or today, which is good news. They removed the drain from his back. He is now on PRN (as needed) pain medication, but is needing 4mg of morphine every few hours. Pain control is a priority at this time. They may try getting him up in a chair today or tomorrow. I have not seen the orthopedic doctor yet today, so still not sure if Anthony will need a body jacket.

They are planning to do an x-ray of his back on Friday, but I did get my hands on a copy of one of his chest x-rays which shows some of the hardware. It looks much better than I expected, like a double rod with wires attached to the sides of each vertebra. Much neater and straighter than other x-rays I’ve seen of kids who have had spinal fusions.