Aug 24, 2011

Not ready to concede

Most of you know that Manny has been sick for over a week now.  He was fine then WHAM ... a cold out of the clear blue.  Most kids would have the sniffles and cough and that would be that.  But for Manny, this is a potentially dangerous situation and we have to be on HIGH alert.

We are doing everything possible to keep him well and out of respiratory distress or pneumonia.  This requires every 4 hour nebulizers, several oral meds, chest therapies, oxygen, monitoring, etc.  (It's exhausting quite frankly.)  But the whole team is determined to keep him out of the hospital if at all possible.

Friday the home health nurse saw him.  Monday we were at the primary.  Today was the pulmonologist.  So he's being fully monitored.  They all say we're doing a great job and doing all we can do.  He seems to be improving slightly every day so that is encouraging as well.

The problem is this ... his oxygen saturation levels are dangerously low at night.  They're fine in the day time as he is strong enough to maintain his breathing while awake but at night, he is too weak.  Even with oxygen, he's not going back to the right levels.  I have never been "authorized" to use oxygen at beyond 2 1/2 liters (since his usual dose is actually 1/2 liter).  But ... it wasn't working.

I agonized several times during several nights if I was making the right decision or if he needed to be in the hospital.  (It's a fine line ... and all the aforementioned professionals agreed with me about the fine line and that either decision was probably a good one ... to go with my gut.)

So today I asked for clearer criteria of when to go to the ER with him.  I was very thankful he gave me fairly clear guidelines.  Hopefully we won't need them and he's improving but I feel safer knowing what they are.

But this is the concern ... this could be an early sign of moving to the next stage towards respiratory failure.  We won't know if this is the case or not until he is all better from this cold and we can then see if this is his "new norm".  We also have a sleep study scheduled in September (after he's well) to see how his complete lung function is doing and what his new baseline is.  To see if it's changed from a year ago.

There is a possibility he will need some interventional breathing help/support (such as cpap or bipap).  Most of my contacts with kids with his disease believe these kids NEED to be on bipap regularly even if the sleep study doesn't show it.  I'm not sure where I stand on all this as this conversation is completely new to me and I need to research more.  But they all say it was a life changer for the better.  Many of the docs who specialize in this field believe it actually prolongs healthy lung function (versus spending all their energy trying to breathe nightly.)

This might not seem like a big deal to some of you ... but to me it's HUGE.  It's what seems like another step backwards in health status.  And I'm just not emotionally prepared for this yet.  And I'm not yet ready to concede that he's getting weaker in respiratory function.

In the meantime, we're just thankful for the prayers.  While he's sick, he wakes up every 5-30 minutes screaming and is not easily consoled.  (While healthy, he NEVER wakes up!)  Dan has slept on the couch for a week now so that he can be semi-humane the next day.  Manny and I are just dragging every day due to lack of solid sleep.  We'll be thankful when this cold is over.

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