Breathe in, breathe out... A good night sleep hightens the senses and provides a clear mind. A new day opens up new possibilities... Perhaps the miracle that we prayed for will come true. Perhaps hardened hearts will soften and help. Perhaps the ugly things will turn into a lovely effort that will help others...
Too many roads, some choices... One truth. Hope endures and conquers the impossible when it is paired with love.
In more serious news... Today I'll visit the med insurance to try getting some answers...
I checked up the SMA Support group for I posted a question about collapsing lungs, which seems to be a continuous problem with Deedee... First of all, I want to make one thing clear: Right now Deedee has no pneumonia, she has no injury and she is just fully loaded with secretions. The secretions are the ones making the left lung collapse... I wish they understood the importance of coughing her out every hour, we understand that one PT for the whole PICU is taxing and demanding but in order for the NIV to work this MUST be done right on time, not just when the PT can! It's a mix of things...
Anyway... Here goes what I posted... Maybe someone from the hospital is reading this and can benefit from the comments.
MY QUESTION:
Doctors are arguing with me now because Deedee's lungs are not working at full potential and they think following the NIV can make things worst. ??? She just had a left lung collapse so they reintubated her Tuesday's morning... Today they are arguing that the protocol is for kids whose lungs work more than 40% well. That anything less will end badly. Because Deedee had both lungs collapsing in December, and a week later the left lung collapse, and now it collapsed again, they are using that to try "proving us wrong" about NIV. Any insight on that matter?
Deedee's chest seems higher on the right side than on left side. They keep mentioning atelestasia... Because of the lung collapse they were not using cough assist giving Deedee time to heal. ??? Is that so?
Oh, they mentioned the proving us wrong and I almost flipped... They have been humoring us to prove us wrong!
Saturation keeps going down and I think it is because of secretion plugs... but noone runs unless it goes below 85. We are not allowed to try suctioning/cough assist, and the hospital is extremely understaffed... The PT complained tonight that now she had to add the cough machine routine, as if she didnt have enough work... Things that makes you go hmmm...
SOME ANSWERS by SMA PARENTS:
ANSWER #1:
1) Why is her lung collapsed. Have they taken an RSV swab, checked for bacterial pneumonia etc.
2) Typically when a child has severe adolectasis you would stay intubated until the lungs are clear enough to be extubated
3) You have to define if you are dealing with A) Illness or B) An injury?
If its an illness she should receive the proper antibiotics and they should be giving her CPT and IPV (I doubt they'll do that) every 2 hours and they should be taking blood gases and xrays often (every couple of days I would think) to make sure they are heading in the right direction with treatment. NIV does not create problems but if the doctors don't know what they are doing then NIV will not work. Have they consulted with Dr. Schroth, Dr. Swoboda?
Lungs don't work at full potential sometimes if there is severe scoliosis but I would think she is too young for that to be happening. You have to speak their language and tell them that your child has perfectly normal lungs but she is all clogged up and the problem is with Difussion and therefore she is not getting any Saturation!
Most of the time our kids are just sick and cant get the junk out of there lungs and therefore we have to implement the cold protocols of using nebs , possible intubation, lots of CPT etc. until the patient gets over what is ailing them. Almost everyone is told not to do NIV and that they should trache their kid.
ANSWER #2
I believe they are mentioning that she has atelectasis, which are pockets of collapse in the lungs - and she NEEDS to be coughed to clear it out - or it could lead to another partial or full lung collapse - if she is underventilated, especially. I don't understand why they say she needs to "heal" - the only way she will heal fully is if she receives aggressive cough therapy and remains properly ventilated!
There is no reason why (unless of course she has an added condition like chronic atelectasis or scoliosis - or asthma), with the NIV, that she DeeDee's lungs shouldn't be working at an adequate vital capacity, meaning that she takes in enough air to ventilate her lungs to keep her O2 levels within normal range. Kids with SMA DO NOT have diseased lungs. Their lungs are healthy - it's just the muscles around them that are weak.
The NIV protocol is in place to help our kids exercise those muscles. It is also in place so that the kids are well ventilated at night - and are able to come of BiPap during the day while maintaining adequate saturation levels. It is also in place to ensure that our kids are well-ventilated, so that collapse doesn't occur. Sure, there are some kids who use BiPap more often - or are 24/7 BiPap dependent - but even in those cases, the BiPap is working at exercising the lung muscles and keeping the lungs properly ventilated.
Used correctly, the NIV can help our kids live longer, better quality lives. DeeDee's doctors are making no sense at all in their approach to her condition...they are treating her as if her lungs are diseased or damaged. Unless she has a perforation or some other type of added damage outside of SMA, then the only way her lungs will "heal" is to cough open the atelectasis - and to keep the cleaned out and properly ventilated!
The PT or RT or whoever made the insensitive statement to you about added work with the cough machine should be removed from DeeDee's case! She is there to HELP, not to complain about what needs to be done to help your child! I know you're in a bind - but I would push as hard as I can to get her coughed - and threaten lawsuit if they don't begin to comply with your wishes. They are not helping her there - they are making her worse by not treating her the way she NEEDS to be treated!
Thank you guys for giving some clarity and perspective to our minds!
10-4
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