For the past 48 hrs Caleigh has been having withdraws from her pain medications. Right before they took the vent tube out her pain meds were turned off so that she would be awake enough to breathe on her own. It worked and then they started a small drip of morphine for her pain. From 8:30am when she was taken off the vent to 8:30am the next morning Caleigh had slept a total of 3 hrs! Wide awake, wired and if she did dose off she would jump at any little noise she heard. Not to mention there was a new patient admitted next to us that night and all the lights were on and it was very noisy. So when the doctors made rounds that morning, and I looked liked I hadn't slept in 24 hrs, they started Caleigh on Ativan and Methadone. Which should help the withdraw symptoms......but Caleigh seems to be allergic or had side effects from the Ativan. The first time we gave it, it was in coordination with other meds so we didn't know what caused her symptoms. Caleigh's respiratory rate went crazy, breathing over 100 breathes per minute and she started shivering all over, trembling. The second dose that was given was alone and she had the same reaction. So when night rounds came we decided that Ativan wasn't the drug of choice for our little princess. They upped the Methadone dosage and started Caleigh on Valium. We've had to up the Methadone dose once again and they lowered Caleigh's Morphine drip to try to get her off of it. It's a pain management balancing act. Caleigh won't be allowed to move to a room on a Morphine drip but she can leave the ICU on Methadone & Valium. Eventually when she isn't in as much pain they will start to wean her pain meds all together. Caleigh's pain tolerance, like many short gut kiddos, is really high and the same med dose that works on one kid doesn't work on Caleigh. She needs a lot of sedation and pain medicines and it just seems to be getting worse each time. It was really hard to see Caleigh in pain like that. It's a horrible thing to go through withdraws and I wish she doesn't have to experience it. We are told that this is normal, but why does it have to be?
So on top off all of that, Caleigh was moved off of the high pressure nasal cannula and moved to just a regular cannula with one liter of oxygen. Getting off the high pressure cannula was another criteria for moving to the floor. We are slowly weaning Caleigh's O's and hopefully we can try to get out of the hospital without a bottle this time around.
Caleigh seems to be heading in the right direction. She is feeling much better tonight and getting that sleep that she missed out on. So I think we will be able to move to a room at least by Monday.
Visiting and the such.....
I've gotten a lot of messages about visiting us at the hospital and we would love to have the company. Visiting hours are from 9am to 6pm. People ask us about food all the time, and yes, we love food and a home cooked meal is our favorite. Although we aren't that picky as long as it doesn't come from the cafeteria! Being in the hospital for almost a year really does make a hatred towards cafeteria food very apparent. No you don't have to bring us food to visit either. Just your company is fine. As long as you aren't sick or don't have kids that are sick we would love to see you! And we ask that you don't bring your children. I can't wait for the day that Caleigh can play with kids but for now we are just trying to keep her healthy. So if you want to stop by just give us a call or email and we would love to have ya.