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UMass Worcester

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 – 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).


Update – Sunday

Anthony had a physical therapy evaluation and he sat up in his wheel chair today! A big step toward getting him home. We had to make some adjustments to his chair since he is now taller! So nice to see him sitting up so straight:-)

Anthony’s tube feedings are on hold because he still has some abdominal distention. They did a KUB (abdominal x-ray) and he just has a lot of air, so they should restart his feedings tonight. He has to be back on his g-tube feedings and off the IV before he can come home.

He has finished is IV antibiotics and morphine. He is just getting Tylenol with an occasional Tylenol with codeine for pain. We are guessing he should be home by Tuesday.


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 – Friday 2

Well, they were unable to salvage the central line, by the time I got back to the hospital, his pillow was covered with blood and the IV fluids were running into his bed and onto his back dressing. You can’t leave your kids alone in a hospital, it’s not safe:-( My feeling has always been that if my child is well enough to go onto the regular floor, then they are well enough for me to take care of them at home. But in this case Anthony is not ready to come home yet. Let me just say that the care is much better in the PICU. I don’t know what the problem is with the floor, not enough staff or what, but I’d much rather be in the unit.

Anyway, now he has no line, so he can’t get fluid or pain meds. They gave him a dulcolax suppository to see if they can get his bowels moving along and have started feeding him pediasure. Hopefully he will tolerate this, if not he will have to go to the OR for another central line.

I helped his nurse change his back dressing, it looks really good. Nice and clean, with who knows how many sutures and steristrips from the back of his neck to his buttocks.

Rich took over at 4pm and they still had not done his x-ray. They ordered a “standing x-ray”.  I told them that this must be some sort of miracle surgery if Anthony could now stand for an x-ray, LOL!

The twins visiting with Anthony