2017: Bounce Back Day!

The brain.  What an amazing, intimate and yet alien mass it is.  Sometimes I find myself thinking about the structures of the brain, the vertical and horizontal weave of networked cells: a microscopic, synaptic forest that makes us who we are.  I think about Jack’s brain, the intense little machine that it has become, and its limitations.  I think about my own memories, represented somewhere within hidden networks of dendrites and axons, some memory pathways so overgrown that they cannot be recovered until they spring to life uninvited through some unrecognized association.  You stumble onto one strand, and find an entire forgotten tapestry.  For me, in February, associations crowd thickly around like little tripwires.  The half-thawed ground, the crackling overhead rivers of starlings on their morning and evening commutes have taken on a dark meaning.  The bare trees seem paused, waiting for the blow.  When the holidays end, when the semester begins, there is a part of me that starts looking over my shoulder.  Sometimes I realize right away that it is getting close to anniversary time.  Sometimes it takes time for me to understand why I feel so strangely off-balance.

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Rituals are powerful, and we have a ritual in our house that is like a spell that wards off some of those swampy, post-traumatic ruminations.  It is time for Bounce Back Day.  Each year on February 27 we talk as a family about Jack’s surgery, with a little more detail each time.  We look at pictures and we talk about the experience.  Then we go do something fun and focus on how glad we are to be together.  This year, I thought Jack could pick what we might do.  He thought about it, and made some suggestions:

  • We can do some Star Wars and Paw Patrol puzzles.
  • We can take all the dirty sheets off the beds and put them in the laundry.
  • We can all go to the forest and throw rocks in the river.

img_1125Ah, the mind of a three year old- both ridiculous and profound.  Just look at that list: he wanted to spend time as a family tackling challenges, keeping the household tidy and running, and playing in the woods.  I think this three year old child just captured my life’s philosophy.

It’s been a while since readers of this blog had some video content, so I’ve curated a few family videos here.  Hope you like them!

As you can see, in the last six months, Jack has become ever more communicative and loves to spin wild stories.  He rarely uses sign language now, preferring instead to use his voice.  He loves to read, often stopping us to ask if we can explain what this or that word means.  He enjoys making up words as well.  For a long time everyone was a silly “baroush”, “hatihot”, or “baroonjay”.  He cracks himself up with these verbal creations.  He can spend a truly impressive amount of time on a puzzle- from 30-piece puzzles with large pieces to mini puzzles of 6 pieces each smaller than a dime.  He remains outgoing and open, and will say hello to anyone.   (The last time we were at AI for a brief check up, he stopped a custodian in the hallway to offer him a high five.  I must say, by the surprised look of delight on the gentleman’s face, I think Jack made his day.)

img_3351Sam remains our happy, sensitive soul.  Right now his great loves are art and playing any game that involves running around with a foam sword.  As you can see in the video, he led me on an adventure under the kitchen table a few weeks ago with his foam sword to fight an annundoolie-flavored dragon (I didn’t know that dragons had flavors!)  I think one of my favorite things about Sam is his dancing.  It’s getting zanier by the day.  He insists on footie pajamas every night and dancing time is apparently right before bed, so the pajamas undoubtedly add to the zany effect of his wild dance moves.

These two bring so much sunlight into our world.  It dances through the tangled bracken of our complicated life, illuminating all the unexpected beauty beneath.  Three years after we sat in surgery wondering what would be left of our son and of our family at the end of it, we are all walking through the forest and throwing rocks in the river together.  It’s awesome.

Medically, we have had an easy year free of hospitalizations.  Our first!  Jack’s had illnesses on and off but no seizures, no reemerging hydrocephalus or such sudden pitfalls.  We have even had some positive developments.  First, Jack had a sleep study this fall that he passed with flying colors.  The study showed that his brain is functioning normally in sleep and there is no central apnea as a result of his brain injury that would require a ventilator for life.  Second, we had our definitive, final MRI showing that his brain continues to grow normally, and his tumor is very much gone.  We are now well past the period for re-growth, so we can say that it’s not going to come back.  We will only be followed with MRIs every 2 years rather than every 6 months to check on the status of his hydrocephalus.  Such a blessing… those words don’t even come close to expressing how incredible it feels to be releived of that burden.  Third, we are weaning him off of his ventilator, (first by removing the forced breaths, and then removing the positive pressure that the vent provided, and now he is on another machine (the Airvo) at night.  This is a very simple machine which gently blows heated, moist air to an area just in front of his trach.   (You can see it in the picture below.) When he is healthy, the work of breathing is all his, and he does well.  When he’s got a cold (which is still somewhat frequent) or a fever (also still quite frequent), his 02 levels drop and he does require the vent.  Amusingly, he doesn’t like to have the Airvo on as he falls asleep- preferring the ventilator.  Some kids like teddy bears, some kids like hard plastic tubing, I guess…?

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We’ve faced continual trouble finding nursing coverage, so lately we’ve had to cover 1-2 night shifts per week ourselves.  As I was writing this post, I learned of another nurse leaving the agency, which will mean that we no longer have Sunday, Monday, Wednesday, and some Friday coverage. Even on nights when Jack is healthy, covering the night shift ourselves is a trial.  We either must sleep on his floor in short spurts while waking to check the Airvo, his food pump or his oxygen monitor, or stay awake.  Each month that Jack does a little better off of the ventilator gives us hope that someday we can let go of constant nursing coverage, but we still desperately need it right now.  Jack is fortunate to have a great team of nurses at his side.  The little man has developed quite a temper, and our nurses do a great job of not taking too much of his nonsense, while giving him real affection and great care.

This May, we expect to have a great visit with pulmonology.  We hope to get him off the vent and discuss what further diagnostics might be needed to reassess his swallow in light of the fact that he has had so few pneumonias this past year (and is now participating in all meals- tasting everything but also clearly ingesting some of what he tastes.)  I think the future for this little boy is very bright indeed.

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Thanks as always for keeping Jack and Sam in your thoughts!

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September- Logistics We Live With

I’d like to write about an aspect of our life that I have not written much about since Jack was in CORP over a year ago: what it takes to keep the household going while keeping Jack in the rich environments that he so desperately needs to thrive mentally, physically, and emotionally.

Nursing.

We could not keep ourselves going without the help of a large staff of nurses and case coordinators from our home nursing company, Bayada.  Nurses come to the house each night so that John and I can sleep.  They monitor Jack and his ventilator throughout the night, silencing alarms so that we can rest, and addressing his needs.  Some help us to keep our syringes and trachs sterilized, our equipment organized, and our meds up-to-date- things we usually do ourselves.  We used to have nursing on Saturdays and Sundays during the day.  Now, due to recent changes in Medicaid coverage, we have a single Sunday day shift per week.  This lets us take our eyes off of Jack long enough for John and I to get all the errands of the week under control.  It also facilitates our ability to get Jack out of the house on fun trips and outings.  Bayada nurses also take Jack to school at the Delaware School for the Deaf.

Nursing is absolutely essential to our lives and it dictates the ebb and flow of our days.  We turn in when the nurse arrives, and we must wake when the nurse’s shift is over.  When we experience call-outs and lack of coverage–which happens at least a few times per month– we are up all night and can barely function at work. Nursing makes our life possible.  It’s also one of the tougher things to get used to.

Transportation:

When we learned that Jack would have a trach and a g-tube, we never guessed that his transportation needs would be the most fraught aspect of our new life.  A certified caregiver must remain at Jack’s side when he is transported, ready to switch out a trach or provide emergency care, getting Jack to and from daycare, to and from school, and to and from his numerous doctor’s appointments.

Here’s what has to happen in order for Jack to go to daycare:  An ambulance picks a nurse up from Nurses N Kids at 6:30a.m. and travels to our house.  We give report, load Jack and his gear up, and Jack travels to NNK for the day.  Last fall, we found ourselves caught in the middle of a contractual disagreement between Nurses N Kids and the transportation company that they contract with.  The transportation company stopped sending a separate van to pick up Jack each morning.  We missed work due to late arrival times and early return trips home.  Jack was en route for well over an hour (which he does not tolerate well- he grows congested and has trouble keeping his O2 levels up). With a friend-of-a-friend’s help, we were able to appeal to the state Medicaid office to secure a separate contract for Jack that resulted in our current, ambulance-every-day arrangement.  Without reliable daily transportation for Jack, we would not be able to work full time.

When Jack’s needs grow, so too does complexity.  After a great experience with Delaware School for the Deaf last Spring, we secured funding for additional nursing coverage this summer to allow Jack to attend school 3 days a week.  Here’s what has to happen to transport Jack to school:

  • A Nurses N Kids nurse must arrive early to meet the ambulance
  • Ambulance goes to Nurses N Kids and retrieves an NNK nurse for the route
  • Jack is picked up at our house
  • Ambulance arrives back at NNK, the NNK nurse signs Jack over to a Bayada nurse, who draws his morning meds and boards the school bus to DSD with Jack.
  • The school bus takes Jack to school and back to NNK at the end of the school day at noon, where Jack is signed over to the NNK staff once again

In July, we had secured a letter of medical necessity and made the insurance request for extra nursing hours to make his additional school day possible.  What we did not account for, however, was that the school district would shift his school bus pickup times to 7:20….  our whole arrangement fell apart.  It took a week of phone calls to try (to no avail) to get a later bus pickup time for Jack, to shift our Bayada nurse’s schedule, ask NNK to send a nurse in by 6:00a.m. (and many of these nurses have significant commutes to work!) to register the change with the statewide agency that controls medical transportation, LogistiCare, as well as with our ambulance company, while figuring out lesser logistics such as how Jack’s meds will be administered with so little time for the trade-off between NNK nurses and Bayada.  Jack had his first week of school this week and sure enough… the zero margin of error that we are dealing with meant that when the ambulance was ten minutes late to NNK, Jack missed the bus. It’s a mess and I’m not sure how we’ll work it out.

Meds and Equipment

John and I have established a division of labor in which he inventories and orders our medical equipment supplies, and I calendar for and keep track of the 7 medications that Jack requires.  Some of the meds are compounded, meaning extra time must be allowed for refills. Some must be refrigerated.  Some last only ten days before expiring and must be mixed at home.  Some, like the new anti-seizure med, must be given at the same time to avoid the possibility of breakthrough seizures.  And one medication, Tobramycin, an inhaled antibiotic that Jack periodically needs to fight lung infections, could cost us over $10,000 per refill unless we tread very, very carefully with insurance.  I can’t begin to tell you here just how many phone calls have been made due to that one medication.

Because of safety regulations, Bayada and NNK nurses can’t administer pre-drawn medications, so I can’t just send Jack off with single doses ready to go.  This means we must make sure we have school bottles that are tracked and stored properly.

John checks the equipment such as our oxygen canisters, disposables such as Jack’s HMEs and suction catheters, schedules deliveries, and has worked out storage systems for all the supplies that work for us and for our nurses.  He watches the nurses’ notes meticulously for any supplies that must be sent in to daycare.  He also schedules the periodic visits from respiratory therapists who must check the functioning of Jack’s ventilators (he has two- one that travels with him everywhere he goes, and another that stays at the bedside).

Let me tell you, when you have to look at the clock and calculate how long it is until the next med, how flexible the timing is on that med, whether you need to pre-pack food and a food pump, whether Jack might fall asleep and require a ventilator, it makes it mighty hard to take a spontaneous drive, a trip to the park, or anything else even slightly spontaneous.

What it all means

I think you get the picture.  Even during the healthy, simple times, there’s a lot going on, and many balls in the air.  I was motivated to write this post NOT because I am fed up or angry or looking to vent (though I certainly get that way sometimes) but because we try very hard to stay positive– and I think that leads me to write in a way that doesn’t always give the appropriate nod to the costs of Jack’s progress.

Folks who know us are often shocked to learn that we have nurses in our home every day, having thought that this was something needed just in the acute period, when Jack was first brought home.  “When will all that end?” we often hear.

The answer to that question, of course, is not up to any of us to answer.  In a pulmonary visit last week, Dr. Chidekel was measured, logical and mostly optimistic.  As we move into respiratory season once again, our main goal must be to stay the course and keep Jack healthy.  Once next spring rolls around, when Jack turns 3 and is all the stronger (God willing) we can start talking about possibilities for weaning the vent support down.  Now, however, Jack needs the boost of good, vent-supported rest to keep his mind and body strong.  As long as Jack needs the vent, he will need the trach to facilitate its use.  Signs that he is growing stronger are good- he now tolerates and uncuffed trach most of the day and wears his speaking valve for 2-5 hour sprints.

But what about the swallowing?

Jack’s eStim sessions have not changed the fact that he is aspirating- we can see food come out of his trach– we know he is not swallowing.  Because he yearns to eat food with us at meals, we have begun to explain to him and to Sam that we love Jack but can’t give him food because it is dangerous to him.  We explain that it is because he cannot swallow, and that maybe someday, (maybe) if he works very hard with his therapists, maybe he can learn.  It’s hard to tell a two-year-old who is crying with the deep, sincere tears of one who knows perfectly well that it’s not fair that no, it isn’t fair but it is just the way it is.  Dr. Chidekel seems to put his hope in Jack’s mind- that Jack is smart, motivated, and willful, and that this combination may help him to overcome the swallowing difficulty in time.

I cannot say that I understand how this will ever happen– swallowing is something that you can do consciously, of course, but it must also happen unconsciously.  And I cannot say that i understand how a child that cannot swallow will ever be free of a trach.  And as long as Jack has a trach, all the logistics that I have outlined today will remain, as far as I am able to see.  But we are a hopeful bunch.

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Moving on into Spring!

Hi there!

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Jack had another clean MRI of the brain this week, and a productive follow up visit with his neurosurgeon, Dr. Piatt.  Monday will bring another follow up with Oncology, and we’ll decide how much monitoring Jack is going to need as we look to the future.

Since my last update, things have been going really well for Jack.

Jack has learned more than 25 signs, and is communicating with us nicely through gesture, some cooing vocalizations, and sign.

We had a great visit with pulmonology back in March, and we are now un-cuffing Jack’s trach several times a day for several hours to see how he tolerates it.  if he tolerates it well for a few months, we may be able to fit him with a speaking (Passey-Muir) valve this summer!  It will be so wonderful to hear his voice again.  I have dreams in which I hear his laughter.  I really long for that sound.  Every day brings us a little closer, I think.  All signs are pointing toward a successful move to a speaking valve; although he had many colds and aspiration close-calls this winter, Jack did not end up with chronic pneumonias– so his lungs have remained healthy despite the challenges that he faces.  When you stop to think about that, it’s pretty amazing.

Although we hope for a successful move to a speaking valve, we cannot be certain that this will happen, and so we have been very involved in trying to get Jack enrolled at the Delaware School for the Deaf’s pre-school program with the hope of immersing him more fully in sign language.  Although Jack has only a unilateral (one-sided) loss of hearing he does qualify for services, which is a great benefit to our family.  We hope that Jack will be able to acquire language… not just the scattered signs that his mother has been able to pick up here and there.  These services will also help us to learn what Jack needs from the family in order to help him to maximize the hearing that he does have.  Once we finally get this going, the sign language scaffold will only strengthen Jack’s little brain– whether or not he is able to tolerate a speaking valve in the future.  It’s not been too easy to get this going, however.  Jack needs to be in the presence of someone who is trained in his care 100% of the time, which means that on preschool days his care will have to be split between a home-care nurse and his regular nurse-run day care center… a thing that is proving a bit harder to wrangle with Medicaid than it really should be.  Once we get the final doctors’ notes, I think we will be alright.  Fingers crossed!

And… man oh man this kid can walk!  Here’s a video that gives you a sense of how much movement he’s now able to achieve on his own.  He’s still unsteady, but he gains confidence every day, and we sure are proud of him.

Although there is so much good news, I should temper this with a bit of reality.  Jack has been receiving e-stim therapies on his face and on his throat for about 6 months, but we have not really seen any improvement in his swallow or his ability to keep his saliva from aspirating into his trach.  He remains extremely vulnerable to the threat of aspiration, particularly when he vomits.  Over the last few months, he’s had some trouble with this.  His nutritional requirements have increased, meaning that the volume of food that his stomach must handle is greater, and the rate at which his food pump delivers food to his stomach has also increased.  We’ve seen some frightening night-vomiting, and some in the morning.  We are still trying to find the right balance between safety, his need for mobility, and nutritional needs.  But I think we will get there.

Now… Sam!  March-April 062Sam is doing great, and is adding simple sentences like “Shut the door”, or “Dinner is too hot” to his ever-expanding repertoire.  He loves signing also, though he isn’t very consistent with how he uses it. He can’t say the “J’ or the “S” sound at the beginning of words, so we hear a lot about the adventures of ” ‘Gack’ and ‘Nam’.  He’s become extremely willful!  Now that language, mobility, and feeding himself are all in the bag, it’s become clear to him that his parents pretty much exist to thwart his further explorations of the world.  So… we may have entered the Terrible Twos a bit early.

But, Sam is never intentionally rough or mean to his brother, whom he loves very much, and they play together pretty well.  Here’s a video in which Jack and Sam each use their own modes of communication to tell me about their toy octopus.

Looking forward to more fun in the months ahead!