STOPS breathing every 2 minutes

sleep study

The results from the sleep study have revealed that Josiah stops breathing over 29 times an hour.  They are all obstructive apneas.  His oxygen saturation is dropping to 80% so his pulmonary wants to put him on Cpap until the obstructions can be removed (adenoids and polyps).  His surgery was scheduled for 5/19 and on the day before as we went in for the pre-op physical he was denied for surgery.  He had a temperature, an ear infection and tonsillitis.  He was put on an antibiotic and surgery is postponed to this Thursday 5/26/11.  So learning he had to suffer through his sleep apnea yet another week was agonizing.  The thought of him not getting adequate oxygen during sleep, gave this mama just one more reason to fear. 

Thursdays surgery is typically just an outpatient one, of minimal risk.  However Josiah is a 9 month old with apnea, scar tissue, and a known sensitivity to Anesthesia. The typical adenoidectomy is preformed on a 3-6 year old.  Emily has had it done twice (there was regrowth, because she was so young the first time- 18 months and 2.5 yrs old).  I was once a person not to over-stress on the risks of a procedure and was over confident in the Doctor's ability.  That has since changed, in recovery, post op from the last surgery he coded multiple times in which we thought we had lost him.  It was a rough 24 hours, followed by 3 days of ICU.  So naturally I am anxious and frightened for what awaits us in recovery.

Josiah's new hair cut

He will have another sleep study after the surgery in hopes that having removed the obstructions, his apnea will have subsided.  If not, he will be placed on supplemental Oxygen at night. 

He will probably be admitted and we are only expecting to stay one night, as long as everything goes as expected.

I will update after the procedure.

This rollercoaster we call life....

As always, in these trails I am reminded that the only thing I can lean on is the trust I have in Christ.  I have no idea why we have been chosen as Josiah parents or why we have been given these challenges but I do know that I will always "Trust in the Lord with all my heart, and lean not on my own understanding."
Proverbs 3:5

Sunday morning my fears were turned into reality, yet again.  Getting ready for church, I take my time and for once do a little something with myself.  See, on this particular morning Emily had enjoyed a slumber party with her "meanmaw" (Chris' mother) and I only had one little person to get ready.  So I decided I would take advantage of the time given and take a shower, get dressed and throw in some housework.  Josiah was sleeping the morning away and I was getting much accomplished.  Finally, we were down to the final remaining minutes of the morning and it was time for him to wake up and eat so that we could make it out the door and into God's house on time.  As I went into his room with all confidence of starting his morning, I saw what I had feared all of his life.  So many mornings I opened the door to his room with a lump in my throat, not knowing what I would find.  Always welcomed with big round eyes and a open mouth smile from strong man, those fears had finally ceased and we were living a "normal life".  Finally his past was behind us and we were moving right along on the road of "healthy baby boy".

I beebopped right on in that morning saying "time to wake up buddy", spirits lifted from a rejuvenated morning. That is when I saw my perfect little guy back in a state of which I had once become familiar with.  His arms were dark in color and his face and neck were as grey as ever.  His body was still and his eyes were shut.  I ripped him up and started pounding on his back, screaming in fear.  I did not know how long he had been this way or if I would get him back.  Every possible scenario ran through my cluttered mind. If only I hadn't spent the morning in vanity, if I would have just gotten him up as soon as I was up, if only...if only...if only.  I started to panic as I held his lifeless body across my forearm trying to awake him.  I went and grabbed my cell, dialed 911 and through my screams and tears the dispatcher was able to understand the severity.  She dispatched ambulance and engine.  I laid him down on the ground and continued to stimulate him vigorously. His eyes popped opened and he was fighting for a breath.  Another 10 seconds later he took that first breath, followed by approx. 2 minutes of labored breathing.  We checked his pulse and respiratory rate and EMT came rushing in.  His color started coming back, we were taken by squad to Chippenham.  It was about another 30 minutes before he got his true color back in his extremities. His usual team was awaiting our arrival in the emergency department. There is a certain comfort level for a mother when the professionals who are caring for your child, remember him on a personal level.  They were able to pull his entire history up through memory and his extensive record.  An x-ray was done to check his throat for any abscess or growth.  At that time, the swollen adenoids were seen and we began to understand where this apnea spell may have come from.  We were transported to intensive care, where once again we were comforted by our Chippenham family.

Over the past few weeks, Josiah had been having blue spells again.  They were few and minimal.  Each resulting in self stimulation, with no assistance.  With the exception of one requiring me to intervene.  We just shook those off and moved on with life, because for Josiah, this was not a showstopper.  I would call the doctor, just to inform them of the event and was told the same thing each time "just keep an eye on him".  All in all he was fine, progressing perfectly and really a whole new child the past 3 months.  We thought we were finally in the clear!

They gave him 4 rounds of Decadron (a medication administered through his I.V.) to relieve the swelling and obstruction of his airway. He is back on his apnea monitor and will be on it for while.  He had another upper g.i. study this morning to confirm that this life threatening event was not related to obstruction in the esophagus due to reflux.  Aware of his surgical procedure we were all confident that this was not due to his previously severe reflux but needed to rule it out.  Now he will have another sleep study done.  He had one in October and it showed a lot of apnea.  Central (basically the brain "misfiring" mainly do to immaturity) and obstructive (reflux, swollen adenoids, nasal polyps and possibly scar tissue from being intubated and the nasal feeding tube) This sleep study will be the same sort of test, it will show any apnea; the severity and the cause.  Then we will know how to move forward.  If it is central, he will be placed on medication.  If it is obstructive, his ENT specialist will go in with a scope and see what the blockage is and remove it. 

There are no openings for polysonogram tonight.  They are hoping for a cancellation tonight and we will know by 4pm.  If there is not a cancellation, then we will be discharged with the apnea monitor and have to come back in for the sleep study.  The results will be sent to his pulmonologist and he will let us know which direction we are headed down.  If surgery is needed, it will not be until next week.  Josiahs ENT specialist is out for the week and he is the only one we trust to operate in that specialty.

It has been a very challenging trial but, the apostle Paul has taught us;
"WE KNOW THAT ALL THINGS WORK TOGETHER FOR GOOD TO THOSE WHO LOVE GOD, TO THOSE WHO ARE THE CALLED ACCORDING TO HIS PURPOSE." Romans 8:28
I have been able to show God's love to the other mothers in the Ped. ICU.  There was a little boy, 3 years old, that has a g-tube and similar complications as Josiah.  I sat down and stitched a g-tub pad for her Sunday night.  I have decided these pads I have been given the talent to make, are going to be my witness to other ailing mothers.