Yesterday, the adrenaline that I had been running on, fizzled out and I had nothing left to give. I left the hospital at 5:30 in the afternoon and headed to the apartment. I survived rush hour traffic in Boston without hitting a bicyclist or getting honked at. I'm calling it a win. A hot shower, full night's rest and grocery shopping this morning helped a lot. I'm refreshed, but still tired. I don't recommend staying awake for more than 24 hours if you don't have to. Eric is holding his own. Trading out nights, seeing what's going on outside the hospital and cooking real food helps.
Post-op Day Two
Yesterday, post-op day two, was calmer and less intense than the first day out. Caleigh's blood pressures leveled out and they were able to take her off of the pressers. This is great news because blood pressure issues are scary. Caleigh continued to swell, due to third spacing, throughout the day. They had to stop her IV nutrition (TPN) early in the day because her phosphorus was very low. They made adjustments and hung a new bag later in the afternoon. Caleigh received two more units of blood and two units of plasma during the day. Her counts were low, blood pressure high and her heart rate was also elevated. She needed more fluid.... remember, fluid resuscitation. They also gave her some Lasix to help her kidneys work off the extra fluid buildup and she immediately got rid of 500ml.
Caleigh has been sedated, but angry about the ventilator. Around 9am they agreed to turn the epidural back on since her blood pressure issues were better. This helped her obvious abdominal pain and she did calm some, but she continued to fight the tube through a sedated Versed drip. This caused her to cough terribly, and need to be deep suctioned numerous times. Even though she is fighting the tube she's very out of it and doesn't open her eyes. My hope is that she doesn't remember any of this and I suspect she won't.
Caleigh's fever has been coming and going with it getting less high. The last one was 99.8F. They did nasal swabs, vent, urine and PICC line cultures yesterday to make sure nothing is brewing. The nasal swabs came back negative for anything viral. The cultures are pending but still negative.
Yesterday was better, but with the pain, vent alarms, coughing and suctioning it made for a very long day with no rest for all of us. Everyone agreed she was slowly moving in the right direction though.
Post-op Day Three
Today, I made it back to the hospital at 11am after Eric held down the fort all night at the hospital. Caleigh was fighting the tube quite a bit from 1am-4am. They kept giving her boluses of Versed and it would calm her for a short time before she would start again and need another dose. She had a loud neighbor that screamed a lot during that time making her stir more. Late last night they upped the Versed drip and her epidural dose.
I walked in this morning and she was noticeably more pink in color and the swelling was better. They gave her more Lasix to help with the fluid and she voided even more than the first time. She continues to get two different types of antibiotics, an anti-fungal, the epidural, Versed drip, and TPN and Lipids. They are starting another sedative drip, Precedex, that will help calm the vent fighting, but not affect her respiratory rate.
There hasn't been any talk about when they will extubate her and I don't imagine it will happen for the next couple of days. As long as she is fluid positive they can't do it. Her chest x-ray shows a lot of fluid on the left side. Not in the lungs but in the tissues around the lungs. They've had to adjust and move her tube deeper a couple of times due to the fluid shifting.
The surgical dressing on her torso was removed this morning and it looks good. They are leaving the area open to air now. There is an area that was a previous hernia, due to her last surgery and compartment syndrome, that is red and discolored. It's where the dissolvable patch was when she was left open for 5 days. They've marked the edges and continue to see if the redness grows.
All in all, things are going well. All of her doctors and surgeons are pleased with where she is. Caleigh is taking this harder than they expected, but it is in line with the amount of adhesions and time in surgery.
Much love to everyone for your continued support.
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