Post-op Day Four
Day four in the MSICU was a difficult one. Caleigh was doing well, but still fighting the breathing tube. They decided to wean all of her sedation medication to get her more awake with the plan to extubate the tube.
The nurse turned off the Versed drip, added in Propofol (aka the Micheal Jackson drug) and then weaned the Dex off that morning. She was totally out because she's supposed to be with the Propofol. It's a quick on and off drug. When they turned off the Propofol Caleigh didn't wake up at all. Hours went by and she didn't blink an eyelash. Eventually she blinked and started to rock her head back and forth over and over all while her eyes were rolled in the back of her head with only the whites showing. She did this for hours and all night. Caleigh's fever returned as well. Not only was it worrisome, Eric and I were concerned about her sweet little brain. All of the sedation medication should have worn off by then.
That same morning the 13 or 14 year old in the pod next to us was having a baby. They set up for the baby to be right next to her. We were in a corner that held four spaces all separated by curtains. Curtains don't block sound or movement and when there's a high risk baby coming everyone is going everywhere. Our curtain moved back and I made eye contact with the little girl that was about to have her baby. She was curled up on the bed with her knees to her chest and she looked absolutely scared out of her mind. I'll never forget her sweet face.
The baby came and the forty some people in the small space continued to care for the mom and her baby. Being in the NICU for so long, I know that the baby was very sick. The mom was moved out of the pod late last night. This was beyond gut wrenching to hear, see and experience. I've said it before and I'll say it again... I hate the ICU.
When I had met my limit and frankly looked like I had been hit by a truck, I left the hospital to go to the apartment. I went to sleep at 7:30pm and didn't wake until 7:30 this morning.
Post-op Day Five
Overnight Caleigh continued to rock back and forth and not respond to Eric, doctors or nurses. Around eleven Eric had experienced his share of the loud chatting, talk and bright lights that goes along with caring for a very critical infant through a curtain. He peaked his head out and asked the four guys chatting if they could "use their inside voice and especially you" pointing to one respiratory therapist that had been especially loud the whole evening. They apologized, joked that that guy didn't have an inside voice and Eric went to lay back down. About five minutes later the nurse asked Eric if he wanted a private room. Done and Done. It's fabulous by the way. It's quiet, has it's own loud ventilation system, glass door and curtain. It even has its own bathroom, which is entirely life changing.
This morning the team decided that they needed to pull Caleigh's epidural. It should keep the medication localized to the area of the abdomen, but "should" usually doesn't apply with Caleigh.
As soon as it was pulled she started to wake up and act like her groggy self. I got to the hospital a little before 11 and they had just extubated her. She was groggy and doing some intense coughing. While getting her all cleaned up she had stooled for the first time since surgery on Monday. This is huge and means that her guts are waking up. They pulled the foley catheter while getting her all clean and situated. There are plans to remove the arterial line and one of her PICC lines later today. Slowly she's getting rid of life saving accessories.
The redness on her abdomen is still there, but a lot better. Two nights ago, we removed the orange plastic diaper that they had been using, thinking that she was having a reaction to it. She had developed big blisters on her skin and a dose of benedryl lightened the redness but didn't get rid of it. Today the blanching, redness and swelling looks better, but it's still there.
Caleigh has blisters and skin breakdown anywhere there was any type of tape, tubing or anything foreign to her and she still has a lot to get rid of. Her bottom has a pressure sore from the swelling, her back is covered in redness and some blisters, Her ear has a pressure sore from the NG tube laying on it, her face is torn up and blistered from tapes and adhesives. Her sweet soft skin is so sensitive that her skin enemies are all over her allergy list, but you have to use certain things in an emergency and that's what they did. Paper tape doesn't hold an ET tube.
To add to the surgery details we received, Caleigh had a large fistula that was repaired from one of her previous procedures. There was definite "spillage" of gastric contents during the surgery since the narrowing wouldn't allow a full intestinal clean out. Today she is still running a fever and it spikes pretty high here and there. She is still on two antibiotics and an anti-fungal.
Now that all the sedatives and pain meds have been removed she's feeling pain in between short naps. They've given tylenol for the fever and her nurse is about to give a small dose of morphine to take the edge off.
As I type, she's napping after an exhausting, but necessary repositioning. We hope to keep her comfortable with rest and naps the remainder of the day. Thank you again to everyone that is thinking about Caleigh, praying for her and taking the time out of your day to read our updates.
Details for mailing a letter or card to Caleigh. You can read more about sending mail to a patient on Boston Children's website.
CALEIGH A. GRAY
7 SOUTH / 10 SOUTH
BOSTON CHILDREN'S HOSPITAL
300 LONGWOOD AVENUE
BOSTON, MA 02115