Tomorrow is going to be a very long day. Today was training.
We had a 7AM pre-op appointment at Children’s. That meant getting Ellie up and out of the house by 6:15. Coffee for us and nada for Ellie who started her time of Clear fluids only for the day and at midnight she goes to NPO(nothing per mouth).
All went well with the pre-op folks and we were shocked to see that Ellie is now up a full kilogram (2.2 pounds) since she went on pre-op TPN. I guess if you have 900 calories of TPN, 750 calories of formula and three good meals each day that you can’t help but gain weight. Shoot, I would gain weight on that diet.
And gain she did. We can feel the chunk in her thighs, which makes us all feel better as she goes into the mess.
We got home around lunch after telling three sets of people (surgery, anesthesia, and the Nurse Practitioner who works with Dr. Jennings) very similar things and getting a tear-free blood draw.
We are very lucky that Dr. Jennings lets us do pre-op bowel at home prep instead of doing it in the hospital. Insterad of being cooped up in a hospital room with a very perky girl, we let ellie ride her bikefor a walk during her bowel prep and played at Ellie's favorite playground.
We are also lucky that Ellie’s prep is easy. No food or formula (just Pedialyte) after 7 AM today. Enemas until things are ‘clear’ tonight. Nothing in the g-tube after midnight.
This sounds easy. Until you try to give a very logical and opinionated three year old her fourth enema in an afternoon.
No fun at all.
The plan tomorrow is for an 8:45 surgery. That means we need to be at Children’s by 7:15 tomorrow morning. Dr. Jennings has Ellie scheduled for four hours of surgery which, depending on whether this time includes prep and finish time could be as long as six hours from the pre-op room to the PACU (Post-Anesthesia Recovery Unit) recovery.
The plan of at attack: Dr. Jennings will do a reconnection of her colon to her short bowel, clean up some scar tissue that will inevitably be clogging the works inside, and take a much-anticipated liver biopsy for the folks who are looking at the long-term effects of Omegaven.
So we hope to have a fairly comfortable girl back to us by late afternoon but understand that things rarely go as planned. If she is out of the PACU by dinner time we are doing well.
This is one of the rare times that Abby and I will both spend the night in the hospital since post-op nights are often action-packed and sleepless. Fortunately we have friends and family who are coming over to take care of Gus.
You would think that after eight surgeries in three years this would get easier. It does. Until we start thinking about what it all means and what tomorrow afternoon could hold for us.
Then it gets scary, even the ninth time around.But on the upside, we probably are all done saying ‘How are your balls?’ to Ellie in crowded restaurants.