74 days since complete TPO resection.

In the shadows, we see great things from Savanna.  She responds like never before to the world around her.  Strength, she is gaining every day.  Finding the blessings in each day are easier as she smiles now when she sees me and then deliberately crawls towards me and wants me to pick her up.  Amidst the unending housekeeping, I see a toddler in the shadows exploring furniture and a house she has never seen on her own.  Instead of seeing only the neighbor’s little girls play, I see mine play.  I see things that scare me when she climbs something on her own the first time.  Through teary eyes, I see the innocent love from her brothers who don’t really know what is going on yet.  I see a toddler nearly 21 months old, functioning emotionally at a typical 6-9 month level.  I see a toddler we are just getting to know.   From what I have read, she is just getting to know us as well.  I see all of this in the shadows of very short moments throughout the day.

Out in the open, she is in pain.  It is inexplicable and no drug helps.  Most feedings devolve into an act of futility within minutes.   She is in pain.  She veins out like a devoted weightlifter.  She exhibits stridor when upset and is still retracting a little in her tracheal area of her throat even when not upset.  She has failed a swallow study, but we were told “it was mostly normal”.  A recent clinic visit with a Dr. GI planted a new seed in my mind for differential diagnosis:  Candida in her throat below the esophagus.  What you say?  A yeast infection in her throat, really?  Why yes.  And I understand it can persist over long periods of time.  If I play Dr. House on TV and populate my white board with symptoms and probable causes, Candida wins over re-flux handily (especially since we are already treating for re-flux in an effort to affect the situation – Dr. GI didn’t care about that).  This day, like so many others, Savanna seemed ‘okay’ in the clinic at that moment.  Why is that?  It is because that is the way it goes.  I know you were expecting a scientific or smart-a$$ statement, but no, ‘that is the way it goes’ is my answer and I am sticking to it.  As soon as we left, all hell broke loose.  In fairness, treatment of the patient depends a lot on presentation at that moment in time – in most cases.

Oh great, let’s treat the Candida, right?  Wait, treating it without formal diagnosis would be ‘sloppy’ according to Dr. GI.  We have to scope her in the OR under GA to confirm.  But, even though we don’t know if it is re-flux or not, we will treat that right away.  What?  What kind of fuzzy ethical line is this I ask myself?  I my heart, I know if this were Dr. GI’s kiddo suffering, the treatment plan would be different, or at least on a different timeline.  Sometimes, it is what it is.  I have accepted that for Savanna, suffering is just part of her life.  As her caregiver, I work hard to learn how to help her, but sometimes you have to accept that there is some suffering still to be had by all.  In His plan, I think this suffering helps reduce the mediocrity toward life when there are good times.  Without doubt, it has changed the way I see the world in terms of special needs people.  For starters, I see them now, which is in and of itself a big step for many people like me with virtually no background whatsoever.

“Oh don’t worry…” says Dr. GI, “If the situation gets worse, call us.”  And, you will do what, exactly?  Gosh, can it get worse?  For a split second, I forgot.  Yes, it most definitely can get worse.  I count my blessings along with each day she seems to be seizure free.  So for now we wait.  We wait for the day she goes under the cloud of anesthesia and away from us – again.  To a place where helping her as her parent, we have to let her go.  From there, we are actually helpless.  It is a dark feeling.  It feels like you are at the bottom of something where no one understands, where you are unimportant despite great lengths that have been taken to educate yourself, despite the emotion surrounding the sacrificial, endless love and care that is required each day to survive.  I will wait for something miraculous to take place yet again on that day.  I will wait for that moment in the waiting room, where I hope to get good news.  And like past experiences, hope a problem is identified that can be repaired with restorative measures.  I just wait.

Tristan ‘graduated’ pre-school after only 4 weeks of enrollment.  I did this so I could have a little break while Rebecca was travelling.  The lady in the very middle in the white runs the school and could not have been nicer to me.  Then I learned she had a daughter with special needs who has since gone to heaven.  I am not sure how much harder it can be on this earth to watch your child slowly succumb to a rare, horrible syndrome.  Even with what we have been through, I can’t imagine what she had to handle as a parent.

On a lighter note, Tristan, Brandon, and now Jackson have continued the pirate gold hunting activity started when Grandpa Squiz was here last (thanks….)  Our neighborhood is still being developed which includes a lot of lake digging.  So, we head when the weather is good and the equipment is resting to ‘look for pirate gold’ that might have been uncovered while they were digging.  These are fun times indeed.

In the excavator bucket!

How many people can say they have been on a D6 dozer…

With friends, exploring the new sections of lake being dug in our neighborhood.

Having Rebecca working from home has been well, interesting. great!  She traveled away from home the first 6 of 8 weeks (6 consecutive weeks) which was very difficult.  The last day of the last week of this travel marathon, the kids were bound and determined to say up to meet mommy, not scheduled to come home until around 1am.  The last one asleep was Tristan who made it until 11pm.  This was a moment I took to low light photography and got a cute picture with a 30 second exposure.  It came out great with wonderful color and detail.  Austin is passed out face down on the floor, and Tristan and Brandon who are best buds, were inseparable as usual.  Savanna, where else, in the sensory swing.

We have wonderful neighbors who help me with the kids.  They are willing to let me nearly kill myself on their boats trying to learn how to wake-board.  (I am forecasting the need for services from adult doctors at Memorial Hermann one day if I keep trying.)  They too have little ones and we are having fun teaching them all how to ski.  Tristan and Brandon have skied now several times and are loving it.

Tristan skiing on a small arm of our lake very close to our house.

We have entered a contract with another Au Pair agency to accept an Au Pair, so full-time help is on the way!  Her arrival will be early July and we can’t wait.  There are projects around the house that need attention, things to paint, things to fix, things to change, just things to do.  None of which I can do while spearheading Savanna’s care and keeping the other three kids alive entertained, well fed, and clothed.  Somewhere in the middle of all the therapy, appointments, and ‘entertainment’, there is endless daily cleaning and housework that in spite of the effort, still leaves the house in a somewhat embarrassing state at pretty much all times while I am on duty.  I am sure Rebecca can expound greatly on this issue.

I feel like I am on an island, far away from land, but close enough to see it.  I am walking a fine line, tip-toeing on eggshells, carefully navigating freshly frozen ice on a pond.  I am deliberately trying to starve her just enough to stimulate the desire to eat, but also making sure she is healthy for recovery from major surgery.  Some people might read this and have differing opinions on what we should be doing to help her.  Help her we are though, as she continues to improve.  In retrospect, had Savanna not already have a G-tube placed, this situation might have been resolved a long time ago.  Dehydration would surely have set in within a week or so of being discharged, and she would have been back in the ER.  We might not have been discharged at all looking back.  What can I say?  It is a recovery in the shadows.

-dad