We made it out of the ICU to the surgical floor.
And we are so delighted to have a private room!
Jules is up on his feet, walking around and the new pain meds thru the
iv are helping him. He took 3 ounces of food for the first time, which is his biggest bottle.
We are so happy to have avoided intubation and so glad to see him smile for the first
time.
We are trying to stay on top of the pain. Our criteria for going home are:
1. Eating/drinking his normal intake of food, which is 5-6 bottles with about 5oz each of food in them.
2. No bleeding
3. No fever
4. Pain controlled
And we have to watch and see his oxygen needs.
Joy
Saturday, May 8, 2010
Miserable Night
It was a long miserable night with Jules waking up every hour in pain. He had three morphine treatments to help stop his crying and suffering and give him some comfort. He has refused most bottles, taking a total of 1-2 ounces over the past twelve hours. This makes staying on top of the pain very difficult. He spits out all tylenol and oxycodone.
They can't do tylenol through the iv as it doesn't absorb that way in the body. He can't have motrin or anything else because it increases bleeding which is risky after his surgery.
This morning, our brilliant nurse thought of the idea to give him -- Rectal tylenol!!!!
We tried it and are waiting to see how he does.
Hoping to be sent to the surgical floor and hoping to see him start to eat soon.
Just got permission to get him out of the surgical gown and into more comfortable clothes from home.
Joy
They can't do tylenol through the iv as it doesn't absorb that way in the body. He can't have motrin or anything else because it increases bleeding which is risky after his surgery.
This morning, our brilliant nurse thought of the idea to give him -- Rectal tylenol!!!!
We tried it and are waiting to see how he does.
Hoping to be sent to the surgical floor and hoping to see him start to eat soon.
Just got permission to get him out of the surgical gown and into more comfortable clothes from home.
Joy
Friday, May 7, 2010
Resting
Jules does not want to eat, so he had to go on iv fluids and his throat swelled so he went back on oxygen. He is sleeping now and they said the next 14 hours will be the toughest. We are watching and waiting and hoping he rests comfortably and isn't suffering or in too much pain.
getting ready
Jules woke up in a good mood. We fed him his last food for awhile and he has been playing all morning with no idea of what is happening to him today.
Just 2.5 hours until we leave for the hospital.
Joy
Just 2.5 hours until we leave for the hospital.
Joy
Thursday, May 6, 2010
surgery details
Check in is at 11:45am tomorrow.
Jules can't have any food past 5am.
he is going to be a very sad starving little pumpkin tomorrow morning = (
It will be a very long morning leading up to a traumatic afternoon for my little guy.
Joy
Jules can't have any food past 5am.
he is going to be a very sad starving little pumpkin tomorrow morning = (
It will be a very long morning leading up to a traumatic afternoon for my little guy.
Joy
Sunday, May 2, 2010
Some fun in pictures
As a brief departure from the morose...
Starting Passover
Ending Passover (Jules is long asleep)
Waiting for hamentaschen on Purim
Starting Passover
Ending Passover (Jules is long asleep)
Tulip Festival
Tuesday, April 27, 2010
May 7 Surgery details
Hi,
there are a lot of reasons why I'm so rattled about this surgery.
First, in normal kids this surgery is outpatient. In and out in a half day or so. For Jules, it turns out that what the surgeon said about "this being a dog fight to recover from," meant -- is that Jules will need to be put in the ICU after the surgery.
There is a risk in doing the surgery in a baby so young that his Uvula will swell up and require him to be intubated and put on the ventilator. The ICU is the place they do intubation -- so that is why we will be there. If we are lucky, he will make it out of there in a day or two and then get shipped to the regular surgery floor for best case scenario - two more days. So, best case is a 4 day stay. The reality is more like a week and I'm not thinking about worst case situations because we have already had a turn of those and I'd like very much for this to be a time he sails through something, heals miraculously, and gets out in the best case time.
Any mention of intubation and ventilators freak me out. This is because the reason Julian has lung disease most likely stems from injury to his lungs and scarring of his lungs from when they intubated him and put him on the ventilator in the NICU when he was born. His lungs are already so messed up, I don't want further damage. Plus, after spending so many hours in the ICU -- I know that people go on the ventilator and then sometimes don't come off. I am really scared of that happening to Jules.
Our last attempt at a surgery was for a surgical feeding tube right before we left the hospital last year. At the time, jules went all day without eating and then the doctor freaked out and refused to do the surgery. That has left me with some baggage about doing any kind of surgery on jules.
http://babysilver2.blogspot.com/2009/03/update.html
Okay, so this is super depressing, but I keep thinking about all the risks in a normal person for surgery and how compounded they are for my little guy and how painful it is to keep watching him suffer in so many ways - through these awful tests he has had, to all the special shots of synagis every month, to struggling just to eat or breathe, and it seems so terrible that he has to go through this surgery too. And I am sick to my stomach.
Joy
there are a lot of reasons why I'm so rattled about this surgery.
First, in normal kids this surgery is outpatient. In and out in a half day or so. For Jules, it turns out that what the surgeon said about "this being a dog fight to recover from," meant -- is that Jules will need to be put in the ICU after the surgery.
There is a risk in doing the surgery in a baby so young that his Uvula will swell up and require him to be intubated and put on the ventilator. The ICU is the place they do intubation -- so that is why we will be there. If we are lucky, he will make it out of there in a day or two and then get shipped to the regular surgery floor for best case scenario - two more days. So, best case is a 4 day stay. The reality is more like a week and I'm not thinking about worst case situations because we have already had a turn of those and I'd like very much for this to be a time he sails through something, heals miraculously, and gets out in the best case time.
Any mention of intubation and ventilators freak me out. This is because the reason Julian has lung disease most likely stems from injury to his lungs and scarring of his lungs from when they intubated him and put him on the ventilator in the NICU when he was born. His lungs are already so messed up, I don't want further damage. Plus, after spending so many hours in the ICU -- I know that people go on the ventilator and then sometimes don't come off. I am really scared of that happening to Jules.
Our last attempt at a surgery was for a surgical feeding tube right before we left the hospital last year. At the time, jules went all day without eating and then the doctor freaked out and refused to do the surgery. That has left me with some baggage about doing any kind of surgery on jules.
http://babysilver2.blogspot.com/2009/03/update.html
Okay, so this is super depressing, but I keep thinking about all the risks in a normal person for surgery and how compounded they are for my little guy and how painful it is to keep watching him suffer in so many ways - through these awful tests he has had, to all the special shots of synagis every month, to struggling just to eat or breathe, and it seems so terrible that he has to go through this surgery too. And I am sick to my stomach.
Joy
May 7th
Got the call that they are moving the surgery up.
New date: May 7th.
I know Jules has been through so much and survived many tough moments in his life, especially
for those first five months in the NICU.... but, I feel scared about this surgery and I'm really shaken up
about it.
More later,
Joy
New date: May 7th.
I know Jules has been through so much and survived many tough moments in his life, especially
for those first five months in the NICU.... but, I feel scared about this surgery and I'm really shaken up
about it.
More later,
Joy
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