One Step At A TIme

Another week has gone by with minimal forward progress. Ryan is getting used to his new home a little more every day. We can see it in the way that he smiles, plays and the readings that are produced on his machines and monitors.

One of the setbacks that the little guy has been through this week is three separate fevers (see photo). They were considered low grade fevers and did not exceed 100.8 degrees. We have noticed that besides the two bottom teeth that have broken through, there are some teeth on the top that want to come out and join the party. That might explain the fevers.

Another incident this week was a phone call at 4:30 am from the nurse saying that Ryan's oxygen saturation went down lower than normal and he started to turn a little blue. The respiratory therapist was able to bring him back to his normal and from then on everything was ok. We were not able to get a good explanation of what happened that morning from the nurse. We have experienced in the past that the nurses tend to get a little nervous and over react at times, especially the nurses that are taking care of him for the first time. Mom and I don't feel that Ryan was in any danger that morning, but we do appreciate the fact that the nurses will call an emergency if they are not sure of his current state.
I was informed today that they have gone down on his oxygen requirements. The respiratory therapists were able to reduce the O2 from 45% to 44%. This may not sound like a whole lot of change, but Ryan is so sensitive. These little adjustments are the only way he is able to accept change. They have tried to wean on the O2 by 5% in the past and it only seems to set him back even further. It may be slow, but we are happy to take the time in order for Ryan's best interest.

Ryan’s care plan meet was bumped up from 6/26 to 6/19. We weren’t informed of the change or error until the morning of 6/19. We were both able to attend and didn’t feel that we received any information that we didn’t already know. It felt that the managers from all of the departments get together to make sure that everyone is on the same page. Any changes have to come from talking to the doctors, who were not at the meeting.