Another Day

Since our last entry, we have been on a roller coaster. We have had some very good and hopeful times, and then times when we have been very concerned about the course he is on. After our last entry, we were up much of the night because Ryan was very restless and agitated. He did have to be placed on C-Pap (pressure to keep his lungs open, but not the ventilator). He was on the C-Pap beginning around 3 am and finally was able to settle down and rest. Which meant we finally were able to try and rest as well. The morning came early though, and when we saw him again, he was still resting, thankfully.

We did attempt a blood draw for the genetic testing that Dr. Mantovani did and were unsuccessful. Because the tests will not provide any information that can change his disease process now, we are declining any further blood draws for this. If he should need a blood count test, or any information requiring a blood test for his respiratory status, we are permitting that.

As the day went on yesterday, we were approached about taking complimentary pictures with Ryan taken by a professional photographer. We were able to do that yesterday through the company nowilaymedowntosleep.org We removed as many wires and tubes as possible and the ones that had to be left in will be photo-shopped out of the pictures. The best part is that he was awake and alert. The sun was shining into his window and he was ready for his close-up.

We were able to leave the C-Pap off at that time and return back to the high humidity nasal prongs with flow of oxygen and he did well most of the rest of the day. As the evening approached, Ryan became restless and for his comfort and ease to breath, we decided to place him back on C-Pap so he could rest easier at night. As I said, when he rests, we are able to rest. Otherwise, it is very difficult to take care of ourselves at all when we feel he is uneasy. He was on C-Pap all night and we were told he had a good night.

This morning, he began to develop a fever and at first was only 100.8 He had had a low grade temperature since we came to the hospital on Monday, but later this morning, it spiked to 102.8 and he was given tyelnol for that. It is very hard to see him have to work so hard to breath, especially with the fever and his status became very concerning very quickly. As they rounded on Ryan this morning, a chest x-ray was ordered, and there are blood cultures pending that were ordered after his slight fever following intubation on Tues. The chest x-ray did not show any fluid in his lungs, which would be a sign of a lung infection. I asked the Dr. what is causing the fever, and he did not know. If they can determine the source of the fever, we will be treating him with antibiotics.

Because he is now "sick" we need to provide him with as much rest as possible so that his body can focus on getting better. It is very important that he sleeps and rests well.

Chris & Jenn