Hooray for Hailey!
So, once again great news for Hailey. We went down to Salt Lake Wednesday morning and met with a team of doctors for what they call "Trach/Vent Clinic". A team of specialists looks at Hailey and we meet with a whole bunch of people in 2-3 hours to go over all of her care.
Last time we went to the clinic they pretty much decided to leave everything as it was, but this time they tried taking the vent off of Hailey (disconnected the vent from her but the trach is still in) and let her breathe with an artificial nose and oxygen. She didn't even flinch! She was smiling and playing and showing them what she could do!! She had the vent tube and was swinging it around in triumph! She was off for a whole 5 minutes! It doesn't seem like much, but after all we have been through with her lungs it is HUGE!!!!
They gave us permission to do "sprints" like that at home, where we will just have her on oxygen (she has to have the artificial nose too because her upper airway is still being bypassed). We will be starting with 5 minutes off twice a day and then moving to 10 minutes off twice a day and then 15 minutes off twice a day. When we get to that point we are supposed to let them know and they may wait to do more until after the heart cath in September. They want to see what her lung pressures do.
They gave us all the tubing and she was hugging it! It was like she knew what it meant! We are so amazed, so grateful and feeling so blessed!!!
We also had her calcium levels and CO2 levels checked. I don't know what the calcium looks like, although I assume it is good because I haven't heard from them yet, but the CO2 was 37.8. For a normal person that would be high, but that is amazingly low for Hailey. I think normal is supposed to be about 25-26. Both of the times she was admitted in Salt Lake earlier this year it was well over 100, which, needless to say, is very dangerous!!!
It was an exhausting day because we drove down and back in the same day, but it was so worth it! I also applaud Abby and Katelyn because even though driving all day is no fun, they didn't complain and did a great job on the trip!
We have just been seeing absolute miracles in the progress she has made these last few months. Thank you for all your prayers, love, and support. Our lives are still crazy and it is hard to know how much of that will change and how much won't, but we know we would never make it without our amazing family and friends!
Last time we went to the clinic they pretty much decided to leave everything as it was, but this time they tried taking the vent off of Hailey (disconnected the vent from her but the trach is still in) and let her breathe with an artificial nose and oxygen. She didn't even flinch! She was smiling and playing and showing them what she could do!! She had the vent tube and was swinging it around in triumph! She was off for a whole 5 minutes! It doesn't seem like much, but after all we have been through with her lungs it is HUGE!!!!
They gave us permission to do "sprints" like that at home, where we will just have her on oxygen (she has to have the artificial nose too because her upper airway is still being bypassed). We will be starting with 5 minutes off twice a day and then moving to 10 minutes off twice a day and then 15 minutes off twice a day. When we get to that point we are supposed to let them know and they may wait to do more until after the heart cath in September. They want to see what her lung pressures do.
They gave us all the tubing and she was hugging it! It was like she knew what it meant! We are so amazed, so grateful and feeling so blessed!!!
We also had her calcium levels and CO2 levels checked. I don't know what the calcium looks like, although I assume it is good because I haven't heard from them yet, but the CO2 was 37.8. For a normal person that would be high, but that is amazingly low for Hailey. I think normal is supposed to be about 25-26. Both of the times she was admitted in Salt Lake earlier this year it was well over 100, which, needless to say, is very dangerous!!!
It was an exhausting day because we drove down and back in the same day, but it was so worth it! I also applaud Abby and Katelyn because even though driving all day is no fun, they didn't complain and did a great job on the trip!
We have just been seeing absolute miracles in the progress she has made these last few months. Thank you for all your prayers, love, and support. Our lives are still crazy and it is hard to know how much of that will change and how much won't, but we know we would never make it without our amazing family and friends!
That is great progress! So happy, Hailey is doing so well!
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