Thursday, September 15, 2011

Where to begin.

As I sit here trying to think of the appropriate words to type to update you, our friends and family, all that I can think is "Where do I even begin?"

First and foremost, the blood cultures never grew any bugs and we're left scratching our heads and wondering what exactly is going on with this child of ours. Much of yesterday was spent trying our hardest to find an IV drug that would control Wyatt's pain adequately, meanwhile he received a slow drip of packed red blood cells. A boost his body needed. After finally reaching a more tolerable pain level and seeing smiles appear on the boy's face we were offered a chance to go home. He was still running temperatures, but they were staying consistently around 100-101 with only small spikes from that point. The doc said he wasn't too concerned with them as long as they stayed that way and nothing new appeared. We were all pleased the cultures weren't growing anything. Possibly this is a viral bug. With the pain meds and such that we have available for him we were equipped to handle his care at home.

After setting things up with the infusion company and navigating a few minor hurdles that needed jumped to get the new meds right away, we were on our way home yesterday evening. As we were transferring him to his wheelchair from the hospital bed, he was complaining that he was cold and hurting. I took his temp quickly and wasn't real shocked to see 101.6. The nurse and I looked at each other and I could tell we were both thinking the same thing, wondering if it was a good idea that we were leaving. I remember saying "Well, Dr. R did say he wasn't too concerned about the temps." With that we walked out of the doors and waved goodbye to all our favorite nurses.

We loaded the boy up and we were glad to be on our way home again. Wyatt moaned periodically during our ride, he was uncomfortable and felt that his tube was popping out of his belly. By the time we pulled up to our home he was crying and holding the tube in place with his fingers. I felt his head and he was burning up. I quickly took his temperature right then and there in the van...104.9. Bryan scooped him up to carry him inside as he was crying, shaking and yelling that he "hurts so much!" The girls stood waiting on the porch ready to happily greet him as he came home again, but instead they were quietly watching with a look of concerned fear on their faces. I sat down at the computer and typed emails back and forth with Dr. R asking what he wanted us to do, as the situation just changed greatly. As instructed, we gave him the meds and were able to get him calmed down. I began to look him over and try to figure out all the issues that were going on. Where was all the pain coming from? Was his tube really coming out or was it the pressure from sitting up right in his wheelchair? At the same time, repeatedly taking his temperature which was now 105.5. He began to fall asleep and as his temperature began to rapidly drop his body began to seize. Not what we needed at that point! Hours later, as the situation calmed down I sat on the couch across from my boy just staring, watching his sleeping body and the fluctuating numbers on the monitor, listening to his bi-pap machine as he inhaled and exhaled with each breath, thinking to myself, "What in the world just happened?!" We didn't dare move him and I wasn't about to leave him sleeping in his bedroom by himself after all that, so I laid myself on the couch and tried to sleep for a few hours. He woke several times through the night complaining of one thing or another. His body struggling to regulate itself. He was sleeping when I saw the thermometer read 106.8 degrees. We watched as his body was eventually able to break the fever again and the seizures started. A cycle that we're certainly not fond of! We watched as the seizure ended, he retched and vomited until he had broken blood vessels scattered on his face. I expected him to fall into the last phase of the cycle...the phase where he sleeps for hours on end, oblivious to the world around him. The one that has happened with him every time. But instead, we had the very opposite of what we were expecting. In the very early hours of the morning he was manic, emotions ranging from one extreme to the other, wired and not able to sleep no matter how badly he wanted. His muscles twitching and shaking all day long. Oh, my word...there was not enough caffeine in our house to prepare me for this behavior today. Saying I'm tired would be an understatement. Saying he's tired would be an understatement! I KNOW he's tired, he just can't 'organize' himself or his body to get to the point of relaxing. Around 3pm this afternoon he rolled over and closed his eyes, I thought for sure he'd be out for an extended period of time. I took a deep breath, "Finally!"

Wrong!

He slept a short time before crying out and wimpering in his sleep, his body twitching. His temperature rising slightly again. His sleep unsettled and restless, before he woke again. He's at least a little less crazy, though still seemingly "high" on something or other.

His urine has cleared of blood with the foley catheter in place, but we now have an "amber" shade of pee collecting in the foley bag. I couldn't figure out why the switch in colors until I went to help him change his clothes this morning. He doesn't only have the "sick look" that he often gets and that we just talked about with the doctor this week, but he's now also sporting the "my liver is not happy" look. With that comes the thick, frothy, brown urine. If it's not one thing, it's another!

Right now, at this very moment his temperature is lowered, sitting around 99-100 degrees, but not above 101. I'm a little concerned with his color and this newer behavior. We did have the opportunity to talk through this type of behavior with the doc recently as we've seen it before, just not to this degree. I'm praying he'll sleep tonight, like really sleep a good deep sleep. I'm also hoping the twitching muscles and short periods of seizure like activity that he's had throughout the day will disappear with a more rested body.

*And by the time I actually got around to posting this, his temp is now above 102 degrees again.
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