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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


Update – Friday

His smile is back! Whooo, hoooo:-) Anthony was transferred to the regular pediatric floor last night. One problem is that in order to move him out of the ICU, he needed a smaller catheter. Since they were unable to start a peripheral line, they replaced his central line with a smaller catheter. Well, not surprising that it’s leaking like crazy. I changed him this morning and he was soaked including his back dressing from the leaking IV. I’m hoping that they will be able to start his g-tube feedings soon and take out the IV.

He is going to be having his back x-rayed today. Hope to get a copy of the x-ray. I’m home now just for a few minutes. The twins had a 1/2 day of school today and Rich is still sleeping since he did the night shift. I’m going the take the boys to see Anthony. First time for Eric, we’ll see how he does…


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.