Ian is doing well....we have seen small changes. Ian has been sleeping a little more, some days he has been napping but by 9pm he is out for the night and sleeping through the night. Yes him sleeping through the night is a good thing, him taking the naps and being asleep by 9pm, not so much...those are some of the changes.
The past few times we have been taking Ian out on the inline humidification system, he has had some problems. He has gone into mild respiratory distress, needing a little bit of oxygen and some puffs of his inhaler. After the last time, I called his pulmonary doctor to look into vent setting changes as the last time settings were changed was about 6 months ago and it was because he was having some mild respiratory distress on the inline humidification. At the time of the phone call a few minor changes were made. Today, Ian went to see his pulmonary doctor. Overall, it was a good appointment. We discussed that we have seen a little bit of improvement since the changes last week. We talked about increasing his settings some more but needed to check a few things before deciding on what needed to be changed. His carbon dioxide levels was a little high at 57, oxygen level was 93 and heart rate was 117, all the while he was sleeping. They would have liked for the CO2 to be lower, the O2 to be higher and his heart rate to be lower. So with his numbers being what they were more settings were changed on his vent....as we were making the changes all of his numbers were being monitored and the CO2 went down, the O2 went up and the heart rate went down. It was amazing to see how just a few changes could help with all that. Ian slept through most of the appointment and when he woke up, his doctor asked him how he felt and he said good. His pressure control was increased to 16, pressure support to 10, PEEP of 6 and breath rate is 12...all of this means that the vent is taking deeper breaths and more breaths for him. This means some more disease progression and he is not able to take as deep of breaths as he used to or expanding his lung as well as he used to. We will continue to monitor him on the new settings and see how he does.
All of this just reminds us to treasure, dream and live.