It's a roller coaster

We are traveling up and down and my favorite, upside down. I really had fun this summer taking Coleson to Lagoon and gaining a new roller coaster buddy, he even went on the Wicked with me. There is something about speed and going upside down that I still love.

Well the only thing that Ammon seems to be maintaining is our tricky status. His respiratory system was going up and down with his lung collapsing and opening. We started giving him DNase to thin out the mucus, which really helped today. He got a lot of junk out. His chest xray looked a lot better today, so we started to turn down his flow rate, but he didn't last long before he needed it turned back up. He was pretty mellow yesterday and last night, catching up on his sleep from the all nighter the night before. I was thinking this is nice, he's out of pain, resting, building up his reserves, but as the day progressed I started thinking he is looking really pale. Then during a CPT(respiratory, suctioning treatment) he wasn't crying and usually he cries towards the end. I mentioned this to the nurse and she checked his temp. Yep, he had a fever. So a phlebotomist came to to do a blood sample. It came back with very low hematocrit, and he needed a blood transfusion. Platelets were low again, so he needed a platelet transfusion. Oh, and our lipase is extremely high again, which usually says pancreatitis, but I thought we were done with that. His glucose levels are fine so we might have a pancreatic cyst or blockage. Well we did an x-ray yesterday to look at his bowels in case there was blockage and the xray looked fine. I guess I didn't explain to Ammon that you always say treat when asked trick or treat. He picked the trick and the doctors are starting to look at me and say we really don't know what is going on. We didn't stand in line or pay for this ride!

I learned from a psychology class years ago (did I really graduate college 10 years ago?) that you can go through the grief cycle for any traumatic thing in your life, not just a death. So I would say I am in the frustrated/angry part, not so much angry but just frustrated that one thing gets fixed, another falls apart. On a good day when he is finally not crying for a few hours, someone will ask if this is his norm now. "No," I reply, "he is a happy boy usually." He usually has a very high pain tolerance, yes he has been on pain for months now, but that is not usual. I brought in a picture of Ammon from Brian's office wall to show them a smiling Ammon. Yes, he's had days where we feel like he is getting better, yes, there are days at home when he doesn't smile and we would be fine taking him home without a smile, but until he smiles at least one time per day (or even one time again), I am not saying he is back to normal.

He's been here in the PICU three weeks now. The doctors and nurses here are amazing, and several of them are even better than amazing. Some have really grown to love Ammon, some even from the first moment they met him, and for those he's becoming more than just another patient. But even these new friends don't want to see Ammon again tomorrow or next week, at least not in here. We continue to pray for more physical strength and healing for Ammon, we continue to hope he can return home soon. Thank you again everyone for your love, service, prayers, and faith on Ammon's behalf, they have been realized, because without them Ammon's journey so far would have been even more difficult.