Fiery arrows

I was reading in Ephesians today about the shield of faith, and how it helps protects us from fiery arrows sent by the enemy.  Thank God for this shield, because I feel like we had some arrows shot our way today.

They tried to take Oliver off the ventilator today but had to re-intubate him because he was not breathing effectively on his own.  They tried all the other options of breathing support before starting him on the ventilator again, but none of them were quite enough for what he needed. 

Re-intubation is not terribly uncommon, but Oliver is, so this is not a simple "we'll try again in a few days" setback.  We've known since he was born that he has low tone (muscle weakness, hypotonia) and fatigues easily.  He also doesn't recover well from situations that cause muscles to atrophy from disuse, like hospital stays, and, as we are learning, ventilators.  Being on a ventilator even for strong adults causes the diaphragm and other muscles that work in respiration to begin to atrophy in even just a few days.  All of these factors, plus his underlying pulmonary hypertension, were all playing against him being successful breathing on his own.  He had done well on the "transitional" CPAP settings on the ventilator, but we think he may have been extra worn out from that too because it required him to initiate all the breaths on his own.

Working under the idea that his diaphragm needs to be strengthened, the doctors are going to be putting him through what they call "ventilator boot camp".  Tomorrow, after he recovers from all the hard work he did today, they will begin to put him on successively lower CPAP settings for longer amounts of time, and letting him have "resting" intervals on full ventilator support.  Just like training in the gym - successive sets with heavier weights and more reps, with rest time in between.  This "boot camp" will last about a week.  So we're looking at being here a minimum of two more weeks from now. 

If "boot camp" doesn't work then we'll be discussing a tracheostomy and a home ventilator with the doctors.  This would allow him to have a variety of respiration support as needed, would allow him not to be sedated, and would let us go home if everything is stable. 

We are very much anticipating getting the preliminary results back from the metabolic tests sometime later this week.  Knowing if he does have a mitochondrial disorder, and then what type, would greatly help us know how to help him.  We'd then have an idea of whether we should expect things to get better with therapy and treatment, or worse as his muscles and organs continue to weaken. 

So it was a sad, sobering afternoon for Joel and I as the last week of progress feels to have slipped into nothing as the nitric oxcide machine was brought back in to the room to help with the return of his acute pulmonary hypertension episodes and he was placed back on the warm air "bear-hugger" blanket again help bring his body temperature back up to normal.  He had to work so hard to breathe during that short time off the ventilator that it just completely wiped him out. 

Sorry, no new photos.  Oliver looks the same except with a new tape job moustache-ed across his sweet chubby cheeks.  Little babies should have kisses on their cheeks, not medical tape. 

We've known since January that we might only get to have Oliver with us for a short time.  As King David did for his son, I will plead with God for Oliver to have a full and strong life, and like David I will choose to praise Him even when I don't understand what He's doing.  But do we ever really understand what he's doing?  So when praise Him, isn't it always in the midst of a confusing, difficult world?