Baby Girl

Millie update: They did the cpap trial, she did not do well with it. She got real tired towards the end. Her co2 levels after were high. We will know what the plan is after we round with the nurses and dr.
 
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Ragnar0711 said:
Millie update: They did the cpap trial, she did not do well with it. She got real tired towards the end. Her co2 levels after were high. We will know what the plan is after we round with the nurses and dr.
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She's definitely one sick baby and we are all continuing to pray for her. Coming off a vent is always difficult no matter what age, but little ones sometimes take a bit more time.
 
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Millie update: everything has been slow and steady. She had another trial not long ago and technically passed but since she was already intubated twice they want to make sure it’s perfect. The nurse thinks she will be off the vent and put on high flow o2 tomorrow for sure after another trial. Her co2 only went up a tiny bit. Normal co2 is 40-50 and hers was 56 I believe. Progress!!! Thank you for all the prayers and support
 
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Ragnar0711 said:
Millie update: everything has been slow and steady. She had another trial not long ago and technically passed but since she was already intubated twice they want to make sure it’s perfect. The nurse thinks she will be off the vent and put on high flow o2 tomorrow for sure after another trial. Her co2 only went up a tiny bit. Normal co2 is 40-50 and hers was 56 I believe. Progress!!! Thank you for all the prayers and support
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good news Ragnar.
 
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Millie update: her CPAP trial today went pretty much the same as yesterday same exact CO2 level. They turned the vent down while we were doing rounds just to see how she would do and from that they could see that her lungs are still pretty weak so they are going to do what’s called CPAP sprints where twice a day for the next 3-4 days for an extended period of time she will get to practice using her muscles more to help her breathe. Neurology is going to come down just to check all our bases to make sure they didn’t miss anything and to make sure that everything is okay with her diaphragm as she’s pretty weak still. Also she is being put on melatonin at night to help with her days/nights being mixed up. Hopefully she gets stronger and early next week she can come off the vent. This morning she was trying to roll on her side so I could pick her up.
 
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Millie update: the Dr came in to have a 1:1 conversation today. Her and the pulmonologist both agree her lungs are ready to breath the way they need to but millie does not have the drive to breath deep enough to be off the vent. Her cortisol levels are really low for not being on pain meds, paralytic and hardly any sedation. With a tube down her throat she should be more uncomfortable. However she isn't. She has been really calm. They are sending labs out to check about a gene mutation that may make her not want to breathe the correct way. It is possible that she has always breathed shallow and when she got sick for the first time it wiped whatever drive she had left. Right now we are just focusing on physical therapy and exercising her lungs. She has been put on a steroid to hopefully raise that cortisol level a little bit.
Edit : the gene mutation the are looking for is to see if she has central hypoventilation syndrome
 
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Ragnar0711 said:
Millie update: the Dr came in to have a 1:1 conversation today. Her and the pulmonologist both agree her lungs are ready to breath the way they need to but millie does not have the drive to breath deep enough to be off the vent. Her cortisol levels are really low for not being on pain meds, paralytic and hardly any sedation. With a tube down her throat she should be more uncomfortable. However she isn't. She has been really calm. They are sending labs out to check about a gene mutation that may make her not want to breathe the correct way. It is possible that she has always breathed shallow and when she got sick for the first time it wiped whatever drive she had left. Right now we are just focusing on physical therapy and exercising her lungs. She has been put on a steroid to hopefully raise that cortisol level a little bit.
Edit : the gene mutation the are looking for is to see if she has central hypoventilation syndrome
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Ragz, we continue our prayers for this little one. I know you guys have to all be a bit frightened right now. We'll walk this path with you.
 
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Debi said:
Ragz, we continue our prayers for this little one. I know you guys have to all be a bit frightened right now. We'll walk this path with you.
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Thank you one and all for the prayers.....I update when Mom updates....Yes very scary:(
Hits me hard, seeing my daughter, knowing Millie is fighting :/
 
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Millie update:
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we wanted to wait to let everyone know the good news to make sure she had a good night. But Millie was extubated yesterday afternoon
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she has been doing pretty well we just have to keep a good eye to make sure she stays on the right track
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 it was definitely a big surprise when grandma papa and the kids showed up last night they had no idea.
 
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