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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.

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Anthony | cindy | | 5 Comments |   scoliosis Spinal Fusion UMass Worcester x-ray xray

Update – Wednesday

Lots to report today! Anthony was weaned off the ventilator during the night and is breathing on his own this morning. He was on O2 for a while, but does not even need that now. His O2 sats are 100 on room air (100 is as good as it gets, for the non-medical folks:)! He had his first dressing change this morning and the incision looks great! He still has a central line and arterial line, but they plan to take out the arterial line today (which is used to monitor his blood pressure). They will leave the central line in mostly because it is very hard to put a regular IV in Anthony. I’d rather keep the central line than have to keep poking him to find veins.

Anthony is not able to start eating (g-tube feeding) yet, because he has no bowel sounds and also has some abdominal distention. He had a fever last night, which could indicate an infection. These issues need to be watched very closely.

They have decreased his pain medication quite a bit, but as we’ve told the nurses, if in doubt, give him pain medication. Anthony is not able to tell us that he has pain, but you can usually tell by his facial expression. Speaking of the nurses, we have been very impressed with the nurses here in the PICU. I’ve felt comfortable with every nurse assign to Anthony, and as most of you know I’m fussy when it comes to nurses! Of course, we are thrilled with how well Anthony is doing so far, but we are not looking forward to moving to the pediatric floor. He could possibly be transferred to the floor tomorrow, but this will depend on how he is doing and also the need for ICU beds. If it’s not too busy here in the unit he may be able to stay here longer, which would be good since the nurses only have two patients in the PICU.

Rich and I have been splitting shifts here at the hospital. I’ve been doing the day shift and Rich is doing the night shift. The covering doctor on last night has actually been to our house! As part of the training for 3rd year medical students, they have to visit the home of a family who has a child with special health care needs in order to help them understand what families deal with on a daily basis. Rich and I have been involved in this part of their training for years and it was nice to have the personal connection with the doctor. I also worked with Anthony’s surgeon for several years on a special grant project. So needless to say, Anthony is being treated like a VIP here.

Here is a photo of Anthony today. He looks great, but is not a happy camper! He has not smiled since the surgery…:-(

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Anthony | cindy | | 5 Comments |   PICU scoliosis Spinal Fusion UMass Worcester

Update – Tuesday

Anthony looks better today, as the swelling in his face has decreased. He is still on a ventilator, but his O2 has been decreased from 50% to 40%. They plan to start weaning him off the ventilator later today and see how he does. He is opening his eyes once in a while, but he’s on heavy pain medications and asleep most of the time. He has a small infiltrate in his right lung, but this is getting better on it’s own. He is on IV antibiotics and has no fever. I got a look at his back today. Not much to see but a really big bandage covering most of his back. Hoping to see an x-ray soon.

On another note, the hospital is buzzing with the news that Craig Mello, a professor at the University of Massachusetts Medical School in Worcester, won the Nobel Prize in medicine for discovering a process that can silence specific genes. Pretty cool, and big local news.

Eyes open
Look how straight he is in the bed!
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Anthony | cindy | | 6 Comments |   Craig Mello Nobel Prize scoliosis Spinal Fusion UMass Worcester

Surgery Done

Anthony was in the OR for over 9 hours, from 7:30am until 4:45pm. The surgery went well. He did lose quite a bit of blood, especially toward the end of the surgery. He received 6 units of blood, which is a lot for a 90 lb boy. He also received “cell savers,” I don’t know what that is, will have to look that up. The wires and rods go from his sacrum up to T2. His doctor said he now has about a 20-30% curve, which is a big improvement. She said she put in a lot of bone, meaning bone grafts which will fuse his spine together. When I asked where she got the bone, she said, “out of a jar”. The bone is from a donor and we will be able to send the donor’s family a thank you note.

Anthony is settled in the Pediatric ICU now. Rich will spend the night with him. He is on a ventilator, he has an arterial line and a central line, a urinary catheter and a drain in his back. His face is quite swollen from all the transfusions and fluid plus laying on his stomach for 9 hours. They will keep him quiet and sedated through the night, will update again tomorrow. Thank you all for your and kind words of support.

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Anthony | cindy | | 4 Comments |   PICU scoliosis Spinal Fusion surgery UMass Worcester