Wednesday night, the only person that slept was Gisèle.
Miles couldn't get comfortable and could hardly even lay down without pain. Jamie and I took turns keeping him company in his room, but nothing we were able to do helped.
When 6am came, we got Gisele ready for school and took her to Kindergarten. We planned for me to go in to work (since I hadn't been there in almost a week) and for Jamie to take Miles back in to the doctor as soon as her office opened at 8:30.
On the way to work, I called Mom and broke down. After talking it through, I decided to take her advice and take Miles to the ER. I called Jamie, who was relieved I had come to the same conclusion he had, and then called a friend and colleague to let her know what was happening, and that I wouldn't be in after all. When I returned home, I quickly packed an overnight bag for me while Jamie showered and got Miles ready to go. He didn't want to go anywhere, but was too weak to really protest.
As we headed to the ER about 7 minutes from the house, Jamie called and spoke to a nurse at the pediatrician's office. After reiterating that we didn't want to just bring him back in to the office, she suggested we take him directly to the TX Children's Hospital on the west side of Houston since they were pediatric specialists; apparently the ER we had planned to take him to had no pediatricians on staff. We agreed and made the 25 minute drive there. When we arrived, Jamie barely had time to sit down with Miles before they took him back into a triage room and hooked him up to an IV.
|In the triage room of the ER|
Not long after, they started him on an antibiotic as they tried to figure out what was wrong. They thought it could be Stevens Johnson Syndrome, Kawasaki disease, a Staph infection... They also started him on morphine to control his pain.
|Miles's IV set-up, delivering fluid & morphine|
After a few hours, we were told he would be transferred by Kangaroo Crew (a mobile ICU unit that specialized in transferring pediatric cases) to TX Childrens in the Med Center. The doctor who told us this thought he would be in the Progressive Care Unit, one step down from the ICU. Around this time, Dad called with the news that Mom was flying down in the morning. I don't know if I even properly thanked him, because I couldn't stop crying, I was so relieved. Her coming meant that we wouldn't have to worry about Gisèle, who would be over the moon to have Nana with her, and Jamie would be able to stay with me and Miles at the hospital. Jamie then headed home to pick Gisèle up from school while I stayed with Miles. (A friend offered to stay the night with Gisele, so I knew Jamie would be able to join us at the hospital later.) When the Kangaroo Crew arrived and assessed Miles, they decided to take him directly to the Pediatric Intensive Care Unit (PICU), and radioed ahead to let them know we were on our way.
|Being prepped for transport|
Riding in the ambulance was awful, though the crew was nice. The driver and passenger seats are separated from the back, and I couldn't see anything going on. I knew Miles was well taken care of by the three EMTs with him, but occasionally I could hear him crying, sometimes specifically asking for me, and I couldn't reassure him. What's worse, we were stuck in Houston traffic at rush hour, trying to make our way downtown while the Rodeo was going on. The ride to the hospital took over an hour.
|The view as we waited in traffic|
|Headed to the Med Ctr|
|Sleeping sideways in the hospital bed, with his "Rudolph toe" shining through the blankets.|
The delicate skin on the inside of Miles's eyelids had basically liquified, gluing his eyes together for the most part. He could open one eye a slit, but that was all. The opthamologist had to do an eye exam because Staph can damage your vision; she had to see if it was necessary to begin treating his eyes. The problem with SSSS is that the slightest pressure on your skin causes it come off. The opthamologist used her gloved fingers to pry open Miles's eyes, tearing off the skin on and below both eyelids, leaving him bleeding and sobbing. It was, hands-down, the worst part of the hospital stay.
I feel like I ignored Dean the whole time he was there, but I was so thankful I wasn't alone at that time. Jamie wanted desperately to be there, but couldn't come back to the hospital until Gisèle had someone at home with her. When Jamie did make it back, we both tried to get some sleep. The PICU is not designed for visitors to be comfortable, though. We had three chairs between the two of us, and a small pile of blankets and pillows. (We needed all of them, too - we found out later that the room's temp had mistakenly been set on 60 degrees.) Needless to say, neither of us slept.
|Taken from my chair looking toward Jamie's two.|
I spent my time that morning with my hand on the top of Miles's head - the only part of him I could touch, since the skin there was staying put. I hated not being able to hug and cuddle him, which is a mama's natural instinct when her baby is hurting.
|This part of him was fine...|
He had more visitors that morning - Dean came again (brave man, after the day before!), and Adam, another friend and pastor. I was so thankful to have support and friendly faces. The PICU nurses we had overnight had been wonderful, but the day nurse was not friendly or helpful, and I was feeling very alone before they came.
One difficult issue we hadn't really anticipated was that, with Miles potty-trained, he didn't want to pee in a pull-up while in the hospital because he felt like that would be having an accident, even though everyone tried to tell him that "in the hospital, it's NOT an accident!" (And the pull-up hurt his skin.) The other options were using an oddly-shaped container while sitting in bed, or being carried to a bedside commode. We tried the container a few times, but it resulted in spilling or accidents just about every time, which necessitated bedding changes. (And any movement was agony on Miles's skin.) That just left carrying him to the bedside commode. Lifting him was torture for us both; for Miles, because it caused the skin on his back and back of the legs to tear, and for me because I knew I was hurting him every time I did it. The daytime nurse somehow managed to be out of the room and out of earshot every time Miles needed to go potty, which left me trying to carry him and manage all of his IV and monitor cords by myself. It was awful. Miles was on a PCA for his morphine, which meant that we had a button we could push to give him an extra boost whenever we thought he needed it (similar to an epidural, for those that are familiar with it.) He got a boost before or after every trip to the potty.
Luckily, later that day, Jamie arrived with Mom! After she came in (and was greeted with plenty of tears on my part), I took the opportunity to change clothes, brush my teeth, and go with Jamie to have my first meal in about 24 hours down in the hospital food court. When we returned, Miles was having his own meal! The PICU doctor, one of my favorites, had given orders that he be allowed to have food and drink. Shortly after that, Jamie took Mom to our house so she could settle in and they could pick up Gisèle from school. He came back a bit later, and we waited outside the room while nurses held Miles down for another eye exam. Then we settled in for another hour or so before getting the news that Miles was being transferred to a regular room for the remainder of his treatment. Progress!
(to be continued...)