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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…:-(


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.