Recovery… in the Shadows

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.

Brandon will at anytime, even if she is crying, jump in the swing and start to do his thing to make her laugh. I have to restrain myself at times, as it almost always works out great. She laughed here from her belly, it was a moment to to shut off the faucet, put the dish rag down, and just watch and absorb.
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The clarity and symmetry in her eyes now is stunning. It was never like that if you look back through her pictures.

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She now surprises me with what she can do.
She now surprises me with what she can do sometimes.
Austin with Savanna on the swing. She is happy here, but definitely in her own world.

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.

Tristan - 'Graduation' from Crossbridge pre-school, where only a

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!

In the excavator bucket!

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

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.

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

What color is my tongue?
It’s summertime!

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.

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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.

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

Each Day there is a Climb and a Summit.

Savanna is 53 days post op from a TPO resection.

Many people have commented on how well they think Savanna is doing, and how whenever they see her she looks so good, happy, and healthy.  They are right.  As her primary caregiver, I have different perception of the situation.  Each day she experiences a sinusoidal track of mood and behavior.  But this is not your normal roller coaster of emotions.  As a result, our house has become a compound for Savanna.  Not just a home base, but a safe zone where I am comfortable at all levels.  Rebecca feels differently I am sure, as she is such a free spirit even after all we have been through with Savanna.

I am a planner at heart.  I thrive on knowing the what, where, when, and who about every outing.  Free spirited, unplanned activities outside the compound are few and far between for me when Savanna is in tow.  Instead, each day is backwardly planned, managed for maximum pleasantness for Savanna when we leave the compound for a scheduled outing.  Some would say this is a character flaw on my part.  At some level I agree, and am trying to live more freely now that her seizures seem to be controlled.  That doesn’t stop the overwhelming desire to make sure I have Diastat®, Ativan®, water, syringes, extra clothes, extra food, extension sets, sensory toys, etc, etc, etc.  I pack light (relative to previous years), but I pack strategic items only with survival in mind if faced with a crisis with Savanna.

Even something as simple as a play-date with the mom’s group in our neighborhood is carefully managed.  I can ill-afford to have Savanna in complete breakdown mode when we leave the compound.  Austin is too mobile and vulnerable to a big fall on most of the playgrounds we attend.  And, trying to hold Savanna when she is having a bad day is like trying to hold a 26lb mealworm on steroids.  (For those of you fish, you get the idea.)  And, even if it is ‘just a play date’, it is the summit of my day.  It is a personal goal just to be able to attend, aside from my daily goals for Savanna’s progress.  Once upon a time, I like to think I had significant impacts on not only companies I worked for, but their customers.  It seemed very important at that time.  Now, my primary job is to keep Savanna alive and make sure she can thrive.  The contrast from then to now in my daily activity is stark.  There was a time for me though, like many reading this, I took my kids for granted.  Work was the most important daily task due to not only the sense of loyalty to the company and those I worked with, but also our family’s financial well being.  My, what I have learned in my 40 years on this planet.  Work is still important.  As all parents of special needs kids know, having access to good health insurance is key in surviving.  But the roles in our family have become more defined as the dependence on others to raise our kids has lessened substantially.   It has been a difficult adjustment, and still a point of contention at times in our house.

Rebecca has been travelling almost every week in May and it has been a quite an adjustment.  I have had to step back at times and make decisions about what has to get done during the day.  Some days, the list is very fluid as Savanna is on a new path now and needs a new diet of sensory input.  Learning how to feed her this input so she can thrive takes time, some days more than others.  I am hoping some of the unhappiness is her expressing herself and needing additional and different kinds of input.  The sensory swing I built many months ago has finally emerged as a worthy project.  She can be completely inconsolable by any means and you put her in that swing and give her a big push and she stops crying and starts laughing.   In many ways, we are starting over with her from a parenting standpoint.

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I must give a shout out too, to Tristan, our 5 year old.  He has been a great helper and guardian of Savanna when I am not looking.  Brandon helps too, but he is 3 and his level of awareness is on and off, depending on what mischief he is currently undertaking.  And, these 4 kiddos have really become closer in the last few weeks.  I have tried to make it a point to do something with each one of them every day, though I spend a lot of time working with Savanna.

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Savanna has a lot of therapy in the compound too, and those days too are carefully managed the same manner.  This allows maximum benefit from the therapy.  If Savanna is really upset or asleep, it can nullify the therapy visit.  When the therapist is an hour late, it can really void the effort as an hour awake for Savanna is a long time.  I have come to realize right now that her wake cycle is about 4 hours.  The first hour now she seems happy, and it goes downhill from there.  The kind of input she receives makes a difference and I am learning how to help her help herself.

When I have to leave for an extended period of time, I take the nebulizer in the car and run it while on our way to wherever we are going.  If she is sleeping it is easy.  If not, I probably look like a drunk driver.  The extra inhaled steroids and ipratropium bromide really help with her stridor and wheezing and general upper airway congestion.   There is something still going on in her throat.  I am not sure, nor is the ENT.  Savanna has stopped eating again almost entirely.  The past 7 days, I managed only about 1 container of yogurt, and 1 container of baby food – that is it.  So, she back on tube feeding which is really demoralizing.  No one is really helping us with this situation, so I feel like I am on my own in figuring out what to do.  She will put anything in her mouth and chew it, but won’t swallow it for nothing.

I have noticed now too that she is spitting up randomly throughout the day and smells like vomit a lot.  She sometimes stops playing and starts to make that sound like she is going to vomit, but doesn’t.  Not sure what to think.  Doctors don’t think she is ‘hydro’ as they call it, short for developing hydrocephalus.   But, as a parent, I just think something is not quite right with her, pardon the pun.  I started her on Zantac to see it helps with the reflux.

In reflection, I have looked at my time spent with the kids lately and realize it is about a 50-50 split.  50% with Savanna and 50% with the other three total.  Unfair for the older ones, but I sure hope one day they understand and can forgive me.

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I couldn’t get this posted in time for Mother’s Day, but for the mom’s out there this is for you.  You can tell something is bothering her, but it is indeed a great little clip.

For Savanna right now, everyday is climb.  It is a challenge.  God is showing us the way, one day at a time knowing we can’t handle much more than that.

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Take care,

Ken