Hello everyone. I haven't put an actual written update on here for quite a while. So....
We are still trying to get Max off of his ventilator. He was down to 25 BPM (breaths per minute) a couple weeks ago or so and we thought we were just a couple days away from trying the C-PAP again. Unfortunately at that time Max started not doing too well, it seemed that an infection in his lungs and breathing tube was really starting to affect him. At that time, he was put on antibiotics for 10 days. The antibiotics ended on Friday April 15th. He responded very well and perked up right away. His BPM ended up going back up to 50, so at this time we got to start the weening (off supplemental O2) all over again. If his blood gasses (CO2 levels in the blood) were good then they would slowly lower the BPM by 2; twice/day. He did pretty good and we got down to 26 BPM. Unfortunately, his blood gasses started going the wrong way (again!) and we ended up going back up to 40 BPM. This can be so frustrating, having to start over again each time. :(
While Max was on his antibiotics he got pretty puffy with extra water weight. They decided to try diuretics to see if this would help him lose some of it. This will hopefully provide a little "extra space" to allow the lungs to continue developing well. As of today we are at 38 BPM and going to 36 BPM tonight at 10:00. They take his blood gas levels every night at midnight and if it is good enough then they lower his BPM at 10pm the following night. We have to get down to 20 BPM to try to get to the C-PAP. This is a crazy roller coaster ride, and I am ready to get off of it.
We are still trying to get Max off of his ventilator. He was down to 25 BPM (breaths per minute) a couple weeks ago or so and we thought we were just a couple days away from trying the C-PAP again. Unfortunately at that time Max started not doing too well, it seemed that an infection in his lungs and breathing tube was really starting to affect him. At that time, he was put on antibiotics for 10 days. The antibiotics ended on Friday April 15th. He responded very well and perked up right away. His BPM ended up going back up to 50, so at this time we got to start the weening (off supplemental O2) all over again. If his blood gasses (CO2 levels in the blood) were good then they would slowly lower the BPM by 2; twice/day. He did pretty good and we got down to 26 BPM. Unfortunately, his blood gasses started going the wrong way (again!) and we ended up going back up to 40 BPM. This can be so frustrating, having to start over again each time. :(
While Max was on his antibiotics he got pretty puffy with extra water weight. They decided to try diuretics to see if this would help him lose some of it. This will hopefully provide a little "extra space" to allow the lungs to continue developing well. As of today we are at 38 BPM and going to 36 BPM tonight at 10:00. They take his blood gas levels every night at midnight and if it is good enough then they lower his BPM at 10pm the following night. We have to get down to 20 BPM to try to get to the C-PAP. This is a crazy roller coaster ride, and I am ready to get off of it.
As of today Max weighs 2285 grams which is just over 5 pounds. He is 16 inches long and his head 32 cm round. His weight goes up and down due to the diaretics that they give him. He is much less puffy now than he was. His weight has stayed pretty steady for the last few days since about a week and a half ago he gained about 1 pound in 1 week!!
Now that I have made you read this long update, I will reward you with many pictures. Hope you enjoy! :)
Damn ventilator, indeed. I can't even begin to imagine how frustrating all of the ups and downs must be for you : ( Hang in there!!! xoxoxo
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