Tuesday, October 23, 2012

Fifteen Days

Fifteen Days.

That's what today is - the fifteenth day of being in the hospital with Peyton.

Two weeks.  So much can happen in two weeks.  So much, yet seemingly so little all at once.

When I think back to October 9th, Peyton just had some odd random symptoms.  She was cranky and a little lethargic.  Not herself.  I'm not sure I would have gone to the ER for that collection of symptoms.  It was only because I'd sent an email to the Cardiologist on the 7th - an email based on notes from the home nurse - just to see what he made of the symptoms.  Some seemed circulatory / cardiac in nature.  It was best to be safe.  He reassured me that he didn't think it was, but he suggested going to the Pediatrician.  Yes, that was a good idea, I thought.  They might know what to do.

Or not.

I hastily got Peyton ready to leave.  Forget waiting on a time when the home nurse could accompany us.  We'd be back by the time her noon shift would start.  And we were - but it was only because we had to run home after the appointment in order to grab my "go bag" because we were to head to the ER.  We'd be better served there.  Some symptoms were concerning enough for that.

Yes, all of those initial symptoms were odd and of concern, but I would never have guessed  the events that transpired on the 10th {day two} would occur.  Sudden respiratory decompensation leading to a MET call - a "code" of sorts - summoning all available personnel to the room while the scary events unfolded before my eyes.  Time seemed to stand still while nearly 20 people poured into her room.  She wasn't ventilating well.  She needed to be moved to the PICU.  In over 6 years of caring for her, she's never been in the PICU {NICU stay after birth aside}.

Peyton in the PICU on October 11th

We were blessed and so fortunate that this stay was short.  We moved back to the regular room on the 11th.  The odd symptoms persisted and there were no answers.  There were no answers for the events that precipitated her transfer to the PICU.  There were no answers for why she returned to her previous state without any further intervention while up there.  We were just so grateful that the worst was over and we could get back to a regular room with her.

Peyton did ok for a couple days, but the mystery of all of her symptoms persisted.  The respiratory symptoms that popped up at the time of that event lingered, but were not testing positive for anything.  For that matter, nothing was testing positive for anything.  The 11th started out well.  

And then it wasn't.

Peyton - October 19th


Another respiratory issue.  Breaths that are so vital were just not coming.  We rushed into action to help her and time seemed to stand still.  About 30 seconds before the breaths came and we were able to breathe once more.  Another move was in order, but only to the PICU step down unit.

Twelve days have passed since that transfer.

My couch / bed


Twelve additional days of tests.  And more tests.  And waiting.  And more waiting.

And no answers.

The amount of blood this child has given to the cause of finding a diagnosis for her current state calls to mind stories of the ancient practice of bloodletting.  A transfusion was almost necessary at one point.  Almost.

I am certain that by the time we leave here everyone will be remarking on how radiant Peyton and I look.  One wouldn't normally associate a radiant glow with having spent more than two weeks in the hospital.  However, I assure you that the number of x-rays, CT scans, MRIs and so on done in the past couple weeks would be enough to leave anyone glowing!

We wait.  And we wait.

The answers aren't coming.  They are eluding us.  Oh, if only it were so simple as to draw blood and discover the source of the problem.  

We have reinforcements.  Peyton's geneticist from Children's Hospital Boston has been consulted multiple times {at my doing} over the past week.  Why sit here scratching our heads if someone might have a clue.  

More tests.  More waiting.

Peyton - October 21st



But there are signs of improvement amidst the worrisome "pauses" in Peyton's breathing.  Pauses that are shorter than those that caused the biggest concerns while we've been here, but they are apparent nonetheless.  Peyton's baseline is returning to normal.  She's closer than she's been in two weeks.  We're almost there.

But how close?  How much more waiting will there be?

All I can do and all I have done is to simply trust in God.  To say that God's got this.  Because I know that I don't.  No one here does.  It's all Him.  He has entrusted us with her care and He has given us an enormous puzzle to try to figure out.  

I trust in God for the answers that will come.  I trust in Him for whatever those answers might mean. I trust in Him to sustain me right now - because this has been a very long two weeks.

I trust in Him to sustain the other half of my family - my other precious daughter and my husband who are just as eagerly awaiting answers as well as our homecoming.

I trust in Him that my eight year old daughter will not be too scarred by these two weeks.  That He will give her some degree of understanding and compassion on the situation her sister is in and that she will know that I love her just as much as her sister.

These past two weeks I have simply done what I must do.

"And now these three remain: faith, hope and love.  But the greatest of these is love." ~ 1 Corinthians 13:13 {NIV}

Moira and I - October 22nd {day 14}
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