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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…:-(


5 thoughts on “Update – Wednesday

  1. Cousin Nick says:

    Hi, everyone!

    It sounds like on the whole Anthony is doing very, very well; I’m so glad to hear that! And to know that he has such talented and dedicated caregivers at the hospital and a selfless and loving family by his side.

    Get well soon, Anthony! We’re all thinking of you!



  2. Barb (TA) says:

    I’m so glad to hear you have all that support around! I know how good that feeling is when you know the attending Drs & or RNs! Makes all the difference.
    Anthony must be feeling strange in this different position for the 1st time. Glad he is doing so well so soon.
    Take Care Cindy.

  3. Ann says:

    Yes, the mixed blessing of doing so well that you are kicked out of the PICU. But, it is great that Anthony is off the vent — a huge hurdle out of the way there. It’s only right that Anthony is being treated like a VIP — he’s got some pretty special parents. Cindy — will Anthony be in a brace? Can you get your hands on his x-ray and post a pic? I’d love to compare 🙂


  4. cindy says:

    Thank you Nick, Barb and Ann:-)

    Yes, a mixed blessing is exactly correct Ann! I did make it clear that I’d like him to stay in the PICU for as long as possible, but if they need the bed and Anthony is doing well, I won’t push the issue…

    I asked the surgeon if I could see the x-ray and she said she will not be taking an x-ray of his back until Friday. I expected them to take one right away. He has had several chest x-rays, but the doc said that’s not really whats she wants to see. But, you can bet I’ll post it if I can get it. Funny, the things we special needs parents compare!;-)

    I don’t know yet if Anthony is going to need a brace. One of the nurses told me that some kids need them and some don’t. When I asked the doctor about moving him, she said, “just don’t fold him.” (she has an interesting sense of humor, LOL!).

  5. IggySingh says:

    get well soon Anthony 😉 here are some iguana kisses for you matie!


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