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As I have written before, my little one suffered a severe traumatic brain injury. She has finally been hooked up with a great pulmonologist who has implemented some great ideas to prevent recurring pneumonia. So far the medication to dry her up has worked very well, she does not have constant copious mucous to aspirate anymore. She also wants her to wear a c-pap at night to help her lungs to expand better while she sleeps. So, here is my question, when she is awake, meaning not in a deep sleep her oxygen sats are fine, staying above 94, but when she falls asleep they drop into the 80's always. The pulmonologist wants her sats to stay above 90, so we have been having her on oxygen at night, but her neurologist and her pediatrician have both said that it is just the nature of her brain injury for her sats to be labile and not to worry about it unless she is showing signs of respiratory distress. What do you guys think, have you had any experience with this. I can see what the other docs are saying because her heart rate when she sleeps is between 35 and 45 and her temp drops very low, I tell the neurologist it is like she is hibernating. We have been to cardiologist and he says her heart is fine, that this is also related to her brain injury and they don't feel she needs any meds or a pacemaker. Sorry so long, it's hard when doctors say conflicting things.
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I tend to think you want to avoid being in the 80's. Is she in the 80's with oxygen at night? I suspect, just based on what you have said about her, that her brain has compensated for damage to her brain stem with another part of the brain that only works when awake. If the cpap helps use it, but if not, I wouldn't waste the effort. My policy is always to balance the benefit of intervention with the how unhappy it makes my daughter while the intervention is happening. We could never do cpap. She sleeps face down and I'm not taking that away from her.
That said, your body needs to be over 90 to be properly oxygenated. If she is spending 12 hours a day at 80, its likely causing damage to other organs, so I think your pulmonologist is probably right here.
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We have not gotten the c-pap yet, we have to wait for an appointment at the only children's hospital who does the fitting and testing for them in our state, which is 5 hours away. We are waiting on a call from them to set that up. She only sats that low without oxygen, if I put her oxygen on she sats up to 97-99 on only .25 liters, so she certainly doesn't need much to bring it up. She sleeps deep because she is on clonidine, she doesn't sleep at night without it due to her neuro-irritability. We never had oxygen or an oxygen sat machine at home until she had a bad pneumonia and the doctor ordered them. She has always been pale when she sleeps, so I am assuming that her sats have always been low when she sleeps and we just didn't know it. My feeling has been to put the oxygen on, because I was pretty sure that satting that low had to be hard on her body, that is what is so confusing about what the other docs have said. I like our neurologist, he is very kind, but sometimes I think he has just written her off and thinks it will only be a matter of time before she is gone, I really hate that attitude, regardless of what they think her prognosis is, I will do everything in my power to make sure she stays around for a long time!!!!
Neurologists are totally like that. I love ours on a personal level but clearly she doesn't get quality of life. When V started having tons of seizures (like 10 an hour) the Neuro said "that's just because of all the dead tissue in her brain is now forming scar tissue and blocking the electrical paths." and she seemed to think that was just normal and what we would have to deal with. Um. . . no! I told her that I didn't really care why they were happening more often but that we needed to find something to stop them. She seemed suprised by that concept!
Keep her on the oxygen if it doesn't irritate her. I wonder if just the O2 staying above 80 all the time will help keep the pnumonia away. I am sure she feels a lot better in the morning after getting 02 all night. Like gas or food rationing, we might be able to survive on what's alotted to us during tough times but that doesn't mean that its comfortable or that we don't have to make sacrafices because of the rationing. You don't want her body or brain making any unnecessary sacrafices.
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Hi.., We never experienced this situations. And even I don't know what to say. Better to go for another specialist and take his advice also. I hope she will be fine soon.
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I don't have a ton of experience with this but I would tend to think that the heart rate and temperature drop may be her body's way of compensating for the low oxygen level. I wouldn't hesitate to try the CPap and oxygen at night. You don't have much to loose and you have a lot to gain. I have always been told to go to the ER of sats drop less than 85 so it surprises me that they would just brush an 80 off as, "oh, that's normal for her cause it happens all the time".
The requirement for O2 concentrators is increasing day to day. Oxygen concentrator is a portable oxygen concentrator which is used on a prescriptive basis by patients who are diagnosed as requiring supplemental health. I have met with one of my neighbours, They said that won't do any harm to our health. I hope you would recover soon. When coming to the case of the long sleep, the saturation levels of these oxygen concentrators can be set to low than the normal speed as these are containing the separate mode for the sleeping and doesn't effect the working or any respiration of the patient.
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