The Pendulum

July 23 9am

With the physical layout of the room coupled with the vast difference in our visit between Ty and Park it felt very much like I was on a pendulum yesterday swinging from one extreme to the other. Walking into the room, you walk about 30 feet to the back of the room to see Tyler. Turning left, you'll pass through an opening in the wall about 7 feet wide. Once passing through the opening you'll look right to see Parker. The boys are both at the back of a large room separated by about a six foot wall partition. This partition acted as the midpoint of the pendulum swing......and there was a big difference with what was happening on either side of the partition. Upon arriving into the room we could immediately see "action" happening around Tyler's incubator......this is never a good sign. Two nurses were working on him......one was "bagging him". As I looked to the monitors I could see he was in trouble. His O2 level was in the teens and, worse yet, his blood pressure had dropped into the 80's. The lead nurse was in the process of calling for the doctor as well as calling for the other nurses to assist. By the time we took the short 30 foot walk from the door to the incubator there were four people around Tyler's bed. As we pasted ourselves against the wall as to get out of the way I became fixated on his monitor. Nothing good was happening. His O2 and blood pressure refused to go up. If his blood pressure hits 60 they will have to begin chest compressions. Hearing that this happened over the phone the other night was bad enough, I did not want to experience it first hand......but I would......I don't think I could have walked away. Luckily I didn't have to endure my son's chest being compressed. His blood pressure went up, but his O2 levels remained in the teens. Within about 45 seconds the doctors were on the scene. I can't tell you exactly what they were all doing, but I know there were five or six people now around Tyler. One was bringing up an old x-ray chest film the doctor was asking for. I looked over at his O2 input monitor and realized he was at 98%........They were giving him almost pure oxygen and he still wasn't responding. After what seemed like forever (realistically it was about two minutes) his O2 hit 50.....still dangerously low....but I started to breath again.....I didn't realize I had been holding my breath.....I wasn't holding it the whole time......I would've passed out.......who knows how long I was holding it......it was a little weird. Slowly.....really slowly........ his O2 came back up to normal. Nice timing mom and dad!!! We spent about an hour with Tyler, just cupping him and trying to get him relaxed. We couldn't leave him to go see Parker yet.....not until he was really okay. They came in and took another x-ray, did some other things and started his feedings. After about an hour they had is O2 back down to about 60%, had him on his tummy and he seemed to be doing okay. It was time to hop on the pendulum and take the short ten foot ride, cross the wall partition and see how Parker was doing. Thankfully, we found the opposite. Parker had been doing great! After two days on the steroids, he was responding. There wasn't any miraculous change, just a few subtle ones that, when put together, made a difference. His O2 was down to 55%. He had been in the upper 60's and 70's. This was significant. They had adjusted down two of his oscillator settings (too much to explain) which was good as well. He had not seen a decrease in his settings for a very very long time. He was still swaddled. This was significant because when you're swaddled the skin temp probe becomes useless. This means that he isn't needing the above heat lamp, which means he is able to help keep his body temp regulated. He seems to really love being swaddled, so this was another good sign. We spent about a half an hour cupping Parker and talking with the nurse which is when we noticed the biggest difference. He hadn't desatted yet. Usually he will desat into the upper 50's and low 60's for a time before pulling himself back up. He hadn't gone below 85!!! He didn't really desat at all the rest of the time we were there!!! It was amazing to see him so stable for so long. The nurse said he had been that way for the entire day. He'd desat once in a while into the 70's, but never lower and never for very long. This was a monumental difference. We went back and forth between the boys, Heather pumped and still he remained stable. He remained that way for the entire rest of the time we were there. Right before leaving we spoke with another doctor who told us they would be keeping Parker on the steroids for the rest of the twelve day course. She warned us that sometimes they will relapse some after the course has finished. So be it......right now there is progress with Parker!!!.....something we haven't seen in a long time. The doctor also said they would be giving Tyler a medicine to try and help him. If it didn't work by this morning that they would be starting him on the steroids as well. I had to explain to both boys that they wouldn't be eligible for the Olympics in Beijing this year, but getting better was more important. They were both sad as they both thought they really had a chance for gold, but understood the ramifications of steroid use. They even promised to get better now, so that they could kick the steroids once and for all. Live and learn......the key word being live!!