While it was part of the original plans, we are no longer going to go to Salt Lake City for rehab at this time. The doctors think maybe when Bethany has shown some cognitive response that she will be able to participate and gain something out of it, but for now she is not a really good candidate.  On the upside, this is great for us as we will not have to go back and forth each weekend. Instead we are home doing therapy a couple times a week and having a home health nurse monitor weight and vitals twice a week.Bethany is doing fine at home. We have had a few bumps in the road with her feeding and are having to adjust a few of her meds.

One very cool thing has happened that is making this transition to home a little more comfortable for everyone! We were graciously given a custom pediatric wheelchair that will help support Bethany’s body and her uncontrolled movements. This allows us the ability to go out of the house, and also gives us more flexibility to position her and move her around at home. Since she can’t sit up or move herself on her own, without the chair she would be stuck on the bed or floor all day unless she was being held. Now we can use her chair, which adjusts angles and reclines as well, so she can even take a nap or “sit with us” at the dinner table. Of course, we hope someday she will be back to her former self and not need the wheelchair, but what a blessing it is for today…

On top of that, we couldn’t be happier with how our new puppy Faith has handled this whole situation.  Upon our return home, she has taken up her post in Bethany’s new “bedroom”, sleeping like a sentry at either the front door or the base of her bed each night.  During the day, if we set Bethany on the floor, she’s likely to be laying next to her curled up within minutes.  She seems to have a sense of what is going on, and offers comfort as only a loyal friend can, by simply being there.

We are still praying for Bethany for continued daily improvements. Like we have said before, she makes little improvements here and there, but it’s a long road ahead. I know how much I want her back to herself and can only imagine what is going on in her little head. God continues to surprise us through the generosity of His people. To those who have reached out in prayer, financially, with meals, and with visits and encouragement, we can not thank you enough. Please continue to pray for Bethany and the rest of our family as we navigate this unknown road the only way we can – a day at a time!

-Amy

Four weeks ago, we came to St. Lukes Children’s Hospital with a hurting, seizing little girl.  She was 2 months shy of her 3rd birthday, and had spent a week in the hospital during at least 1/3 of the months on the calendar since her 2nd Birthday.  She had taken 2 ambulance rides and 2 Care-flight helicopter rides, all in the same year.  Many would see that as purely half empty, but they would miss the fact that says she walked out of each of those hospital visits, and that the hospitals, ambulance and the helicopter crews were amazing people that provided life-saving care in a time of crisis.  Those are the “half-full” balance.   Was it rough?  Sure.  Were we blessed to still have our little girl, even through all of the challenges of 2012?  Even more so.  Half full or half empty?  Both.

Today, we embark forward into a new season of our life and of Bethany’s.  She has yet to fully recover from the seizure of Dec. 20th and the coma that followed, however, she is slowly, inch by inch, showing improvements.  We know that there is a long road ahead for her, but we also know that she gets the opportunity to travel that road with the support of her family and a world-wide group of caring, praying people behind her.  For that, she is a fortunate little girl, and we are a fortunate family.  Half full or half empty?  Both.

The Plan

All things being speculative, here is the gameplan that was devised today with the assistance of Bethany’s Neuro team, Rehabilitory Doctor, GI docs, therapists, Geneticist, and Infectious disease doctors:  They all collectively feel that she should spend the weekend here at St. Lukes.  If all continues to trend positively or at least hold status quo, they will release us to home on Monday to allow our family to spend the remainder of January regrouping.  This will be the first time since before New Years that more than 3 of us will be in the house at the same time, the first time for us to all be home together since before Christmas.  Bethany will stay in the living room, joined by a suction machine, a feeding pump for her liquid nutrition, and a pulse-oximeter to monitor her oxygen levels.  We will be administering all of her medications through her new feeding tube, and will have nursing and PT,OT and Speech support during the days.

February 3rd, one of us will report with Bethany to Salt Lake City where she will begin daily full-time, in-patient rehab therapy.  Switching each weekend, either Amy and I will stay with her in SLC while the other returns to Idaho with Emily and Dillon for the school week.  On weekends, we’ll drive back down so we can be together as a family at the Ronald McDonald House, and then switch roles.

When asked about duration of the Salt Lake rehab, our doctors only estimate was “months, not weeks”.  Since there is no obvious damage in Bethany’s MRI and no evidence of infections in her blood or spinal fluid, there is no present reason not to pursue rehab and expect to see progress as a result – but they have said that progress will be slow, and that while normal may return, it may take a year or more.  Half full or half empty?  Both.  Scary?  You bet.

But this we know – Bethany’s eyes are open.  Today she fought to pick her head up off her pillow.  She made noises as if she were trying to sing when a therapist serenaded her with guitar lullabies.  She gets upset when you mess with her too much.  Bethany is fighting with all that she can, and Bethany is a precious, priceless, and much-loved daughter of the One and Only Living God.  She seems to have that knowledge written on her heart and cheering her on from deep within her, as we all do if we will just allow ourselves to listen.

So, once again – Half full or half empty?

Neither.

We have the hope that comes with knowing that with God, all things are possible.  For those with the same hope, may we never look solely to our circumstances, which can so easily confuse or distract us.  God’s word has proven true time and again in our lives, as we hope it has in yours, and His word says “that in all things God works for the good of those who love him, who have been called according to his purpose.” (Rom 8:28)  So struggles notwithstanding, we know without question that God is at work in this situation as well, and for that, our “glass” is overflowing.

With great appreciation for your continued support and prayers,

Chad & Amy

Many of you have been asking how you can help, or what you can do to make things easier.  We have pondered that question alot lately, and struggled with what we knew was the right answer out of fear that it would be misunderstood.  Hopefully that will not be the case.

The oft-thought mundane things that constitute our day to day routine are pretty important to us right now, and as such, we may seem unwilling to let go of them – for good reason.  Things like picking our kids up from school, doing our laundry, and cleaning our house are things that keep us in “normal” mode as a family right now.  They let Emily and Dillon see mom and dad doing things that they normally see mom and dad do.  Thats important in the middle of chaos.  Its not that we don’t want help. Its more that we can’t afford to let go of the few things that are helping Amy, Emily, Dillon and I feel like things are still a little normal.  With that, we turned to the long term.  What if there was something you could do now that would also help us get to where we later want to be?  After all, this is not a short road.

As a family, our heart is ministry and missions work.  That is where we thrive.  We enjoy being in the middle of a desolate place trying to make a difference in someone’s eternity by impacting their present with the Love of Jesus.  That is just who we are, and medical  situations won’t change WHO we are.  They just change the HOW.

Driven by that truth, we are resolute in the a decision that Amy and I made together, ironically about 2 weeks prior to Bethany’s seizure – That as a family, medical conditions and all, our desire is to live as missionaries and raise support to enable us to serve full time in ministry –  how ever that may look.

Before the panic alarms go off, this does NOT mean we are trying to take Bethany out of the country or back on the road.  Quite the opposite.  We are, in fact, busy at work on a concept that instead will leverage technology to enable other missional Chrisitian organizations to expand their reach through our work.  In short, we intend to equip others to do the going.  And we need your help to make it a reality.

With your support, our family can BOTH have the freedom to maintain some normal as we get through this present medical issue (and the likely upcoming weeks of commuting to and from Salt Lake for rehab…) AND begin focusing on the next expression of share5 that will take Giving the Good News to an entirely new level.  Will you please prayerfully consider how God would have you get involved?

As I look out the window from the PICU room where Bethany is still sleeping (from an almost undisturbed night of sleep!) I find myself thinking, “What could be different today?  What could we see that we haven’t seen in the last 16 days?” The answer, simply, is that I don’t know – and that in itself can be scary.

I’m looking at the sun coming up, and in it, I see a constant reminder that as God wakes us up with each day, He’s envisioned a purpose for it. Bethany may not be where we all want her to be right now, but she is improving in little ways with each sunrise, and there have been but a few very cloudy days. We are also realize that the challenges that seem to come each day as the sun peaks over the foothills are getting less and less difficult compared to when she was not waking up or moving at all.

With a new day ahead there are things we still don’t know, but there are some new things that we do. We do know our next few steps. Her team of doctors are still searching in corners, looking for even the most unlikely of answers.  There is a plan for early next week where Bethany will be placed under general anesthesia a single time to cover 4 independent procedures. She will have a follow up MRI and a LP (lumbar puncture – spinal tap) to see if anything has changed from her previous ones in December. She will also have a muscle biopsy from her calf to look for Mitochondrial disease, and finally, she will get a GJ-tube for feeding inserted through her abdomen and stomach into her small intestine. She currently has a feeding tube through her nose and constantly wants to pull it out, so we decided to go ahead and do the GJ tube, considering both her current frustration with the nasal tube and the slow progress Bethany has shown to this point.  It is a reversible procedure that we may well have needed down the road, and we don’t want to have to put her under anesthesia twice, so this seemed like a logical time.

Each day, we continue to talk through possibilities and test results with her doctors.  Multiple metabolic and genetic tests have been sent off to labs and more results are still pending. Most metabolic testing takes two weeks or more to get results, so patience is a key for us right now. Yes it’s hard not knowing; not having an answer, but as many of you know, I have been searching for answers for my own health issues for over a year now, so not knowing has become awkwardly familiar. I can say this – It is way more difficult to see my daughter not responding or quickly improving like she typically has following past seizures than to wonder about my own diagnosis. It is in this discomfort that we choose to trust in God’s protection, provision and peace.

That fact is obvious that we are dealing with something more than a seizure at this point, but the question now seems to be what exactly is this?  In the meantime, we are grateful that our little girl is still with us, and we endure from sunrise to sunrise with the hope that somewhere an answer exists.

- Amy

Bethany’s last two weeks have been a little bit like a board game, each day like a new turn.  She moves forward one space on some days, more on others.  Occasionally, of course, there is the possibility of falling back a space.  Its alot like Chutes and Ladders.

Enter New Years Eve.  Around 10pm, Bethany started shaking.  It didn’t look like her typical seizures, but it was enough of a concern (as it lasted for about 45 minutes),  that it prompted another 24 hour EEG.  Call it a small chute with a short ladder on the next turn, since the EEG means we can absolutely tell whether the movements are seizures, which is better than just observation.

Fast forward 22 hours – Midnight Jan 1 – Bethany has another episode of shaking.  This one was much more involved (small chute) BUT we had the EEG running (small ladder!), so neurologists would be able to confirm the actual brain activity.  We placed the call to the on call Neurologist.

Next turn – 1am.  Neuro report came back that she did, in fact, have about a 7-8 minute seizure.  (Chute.  Definate chute.)  With that confirmation, we gave Bethany another dose of anti-seizure meds and she went to sleep.  Nothing more for the rest of the night, and she slept to about 10am.  (Progress. Move forward one space.)

Noon on Wed, Jan 2 – Bethany’s breathing sounded a little hoarse, so we called in the respiratory therapist to have her suctioned.  Shortly thereafter, her breathing began to sound wheezy and her respiratory rate began to climb. you could tell she was working harder for each breath, almost like an allergic reaction.  Two breathing treatments later, following several unsuccesful attempts to fully clear her airway, it was decided to send us back to the PICU.  No sooner did we arrive in the PICU than she began seizing again.  (See that big purple slide in the middle of the board?  Yeah, that one. Chute.  Long, frustrating, feels-like-you-could-be-out-of-the-game Chute.) Almost, but not quite, back to square one.

But there is always another turn.  Fortunately, we were again able to get this seizure captured by EEG.  That gives us more data.  One step forward.  She is back on meds and seems to be calming down.  Move ahead again.  We will be in the ICU until they are comfortable that the combination of meds are controlling the seizures, and she has full time respratory monitoring in here.  Move ahead 2 spaces.

So that is the update.  Bethany didn’t have the best last couple of spins in this Chutes and Ladders game, but she seems to be well aware of the fact that more than one person has come from behind to win.  There is always that ladder in the middle that takes you right back to the top, and she’s not giving up.  We’re far from giving in, and we know that you are all fighting for her and with her as well.  Thank you for your continued prayers.

Until the next turn…

-Chad & Amy

Life has Mountains.  We have different names for them – struggles, trials, tests, challenges, setbacks; and just like their natural counterparts, our mountains come in different sizes, different shapes.  Some seem like little more than the rolling hills in East Texas that we barely have to strain to overcome.  Others seem like the Rockies or the Andes, like trying to climb Everest without oxygen assistance.  However, regardless of our mountains, climb them we must if we want to see the beauty and promise that lays on the other side.

The Power of Reflection

Over the past 12 days, our family has been climbing the present mountain before us, but we have not done it alone.  We’ve done it with the support of great friends around the country and the world.  We’ve also done it with the memory of all the things that God has done in the past year and beyond.   As a very perceptive pastor friend of mine said recently, “Reflection is meant to co-exist with the anticipation of what is yet to come.”  You see, as proved by the past, God has made a way, and He will continue to do so, because that is who He is. Today, on the last day of 2012, I challenge you as well to look back on your year and those before it and see if you too can’t find confidence in the good things that God has done.  In so doing, I hope you will find a few simple truths that you can apply to your present mountain.

Trust me.  When you are high on the edge of a cliff, I get the whole point of the saying, “Don’t ever look down!”  If you look down, you may become paralyzed in fear realizing how far back you could fall.  The logic, however, fails to take into consideration a climbing partner.  The purpose of a climbing partner is to lock you in where you are, ensuring that if you did fall, the setback would be minimal instead of fatal.  Once you regain your composure, you readdress the mountain, regain your hold, and recover lost ground.  With that in mind,  I challenge you with this:

Go ahead and look down. God has you locked in, and if you don’t -you’ll never realize just how far the two of you have already climbed.

Be blessed and as you look forward to the great things to come in 2013, remember this truth -

Higher than the mountains that I face
Stronger than the power of the grave
Constant through the trial and the change
One thing remains
One thing remains

Your love never fails it never gives up it never runs out on me

I used to complain about having no shoes…
Until I met a man with no feet.

Point being – we always have something we can be thankful for, if we will just gain the proper perspective, and there is always someone whom we can encourage – as they may not be as fortunate as we are at that moment.

I know we haven’t updated in a few days. We have been caring for 3 sick kids and really haven’t had much new to report on until tonight. There are signs of improvement with Bethany – she’s starting to turn her face away from the nurses suctioning saliva or wiping her face.

Her head is moving more, and sometimes she seems to look in your direction and you begin to think she is connecting with you, but a simple wave or finger snap still causes no response.

Tonight she surprised me and the doctor – we were just outside the room when she let out a cry and looked super scared.  It lasted for about 10 seconds and then she returned to staring around the room. While freaky, little bits of life are coming out (in strage and random ways, yes, but regardless they are coming out.)

We still don’t know fully what’s going on with her at this point, but they are going to look at why her heart rate is still slightly high. Bethany will have an EKG in the morning and then, pending the results, may be moved the the regular pediatric floor.  Her respiratory and neurological state are controlled, so she will simply be monitored for now.   As we continue to pray for the time when she really “awakens”, God continues to show us daily that there is hope in the midst of struggles! Thank you for your continued prays and please don’t stop! She has a road ahead of her that right now looks admittedly long. Once she is awake, there will be a recovery process which will include lots of therapy and time, but it will come, all in time.

Time, however, is a unique thing around here.  As I walk the hallways here in the PICU to go to eat or to go to the bathroom, I often run into either new parents that just got here, or ones like me that are waiting for their little one to get better and walk out. Everyone is biding time.  Some wish things would hurry up.  Others wish they could slow time down.  Occasionally, you wish you just had more of it.

Tonight I think I met the parent with the scariest case I have seen in my 10 days here, and to them, time is critical.  Little Michael came in last night having a seizure, and along with it – four heat attacks.  He had to be resuscitated twice.  They have ice surrounding his brain trying to “perserve it”, as his dad said. Either the seizure is causing his heart to stop or his heart stopping is causing him to seize.  They do not know which.  So please, tonight, join us as we all pray for little Michael.  Tomorrow morning they will transport him to Salt Lake City to give him a pace maker to stop the heart attacks.  Hopefully it will stop the seizures as well, and give a father and his little boy a bit more time.

Believing -

Amy

pa·tience  /ˈpāSHəns/  -  Noun - The capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.

Thursday to Thursday.  To say that this week has been long would be an understatement.  While no medical emergency is ever “routine”, we certainly had a more “routine” expectation of how this week was supposed to progress.  The last several times Bethany has had a seizure, it went something like this:

1. Seizure appears and we give her our emergency dose of Diazapan then call EMS.
2. EMS Transports her to the hospital, and either sets an IV on the way or just monitor her vitals.
3. Once we arrive at the hospital, the set the IV line and continue to give her meds if the seizure is visably continuing.
4. If we have to use a significant amount of medication, she will start to desaturate and need to be intubated (breathing tube).
5. The breathing tube jumps us to a more acute level of care, so if needed, we transfer to a PICU facility.
6. The various meds wear off over the course of 1-2 days and then she wakes up groggy over the course of about 12 hours.
7. They pull the breathing tube.
8. We go home about 24 hours later.

While none of that is necessarily “simple”, it has more or less become “routine”.

Until this week…

This time, everything continued as we would have expected up to about number 6.  Then she didn’t wake up.  The meds wore off (we can test levels in her blood) and she stayed asleep.  That is when they told us she was in a coma.  A day or so later, she began to move fingers and toes.  Then her eyes opened.  Technically, there was enough progress to say she was “awake”, however she was not yet “responsive”.  By Christmas, she was moving her legs in response to scratching the bottom of her foot, but no real intentional movements, just reflexive.  She is also making some facial movements, like scrunching up her eyes and shifting her jaw, both repetitive movements that looked somewhat similar to things we would have considered possible seizures if we saw them outside of here. (more on that in a minute…)

This leads the doctors to believe that she may have encephalitis, or an infection of the brain tissue.  Mostly, this is due to the fact that she has not returned to her normal functions even though we’ve verified that all the medications are effectively out of her system.  There was a chance that what we saw with her face movements could be seizures, and that a series of small, continued seizures would keep her in an unresponsive state.  That was ruled out over the past 24 hours with a video monitored EEG, which came back completely non-seizure, though with a slightly quiet background (as in  she looks like her brain activity is slightly depressed – no surprise).  Encephalitis is in the brain tissue, it can not always be seen in the spinal fluid (we’ve had two clear spinal fluid panels now) and could be either bacterial or viral.  If bacterial, we’ve more than covered it.  If viral, its just sit and wait and watch.  The doctor likened it to your brain, with the flu.

So we are practicing our patience.  We are waiting for Bethany’s brain to decide to turn a corner.  We are waiting for her to speak, or to cry, or to do anything that would indicate that her condition is actually improving in a visual way.  Please continue to pray with us for these specific things:

1. That she will begin following specific things with her eyes, making a connection visually and following objects in front of her.
2. That she will continue to handle her saliva and cough to clear her throat – critical to maintaining her airway.
3. That she will improve and begin to respond to gentle stimulation, not just pain (when you rub her arm, or touch her cheek)
4. That she will gain control of her head and neck
5. That she will gain control of her trunk, so she can sit on her own.

If the doctors are correct and this is encephalitis, we could be looking at several weeks or more.  If they are not, well, we need to figure out what it is.

Patience…  hey – it’s called practicing it, not being perfect at it.

In the meantime, we will continue to try to rule out other possible causes, continue eliminating possibilities, and most importantly, remain steadfast in our prayer that our little girl is going to return to her previous fun-loving self.  Thank you for standing with us.

Blessings,

Chad & Amy Houck

Tonight, Bethany got to go on her first outing.  At 4pm, a group of families who had been in either the Pediatric ward or PICU in previous years at Christmas hosted a dinner for the families that were here with children.  To those host families, we can not say thank you enough.  You truly understand the value of giving, and your gift was an immeasurable blessing to our family.

It has been 6 days now since Bethany had a seizure at home, then started into a course that included 2 days in a comatose state with no movement whatsoever.  Sunday, she broke through the fog and opened her eyes, and she has been slowly improving since.  Bethany is now disconnected from the ventilator and seems to be managing her breathing fairly well.  She is working on remembering how to swallow, so we are monitoring her as she figures it out.  Her situation is made a little more difficult by swelling caused by the breathing tube irritation she’s had in for the past 4 days, but she’s getting better.

It also seems like she’s responded a couple of times to Dillon (she managed to share a small smile with him at dinner) Emily, and to the people at her bedside taking care of her.  Amy thought that she responded with a sign of “yes” when she asked a question.  There are little markers that keep providing hope.  Now we just watch, wait, and pray, and a little at a time, we are getting our little girl back.

We had Christmas here in the room today, and honestly, it was a good experience.  Both Amy and I alternated holding Bethany and it was one of the happiest moments of the week.  One of our friends came by and spent the afternoon, and Grandma has been here all day all well, so we had everything we could have asked for!

Merry Christmas to everyone.  Keep her in your prayers tonight, and we’ll update more tomorrow!  A drop at a time…

The Houcks

The prayers from all across the nation are continuing to usher in a miracle in our midst.  Her hands are moving.  Her feet are becoming more responsive, and her eyes are starting to seem more controlled.  She can move them to both the right and left.  Prior, she only seemed to go right.

We are all here, brought the presents and a small tree with us, and are having Christmas as a family.  That, in every sense of the word, makes us blessed.

Thank you for being a part of our Christmas, and Christmas blessings to you all.  Remember today that a small baby split eternity and entered our world, not to save us from experiencing its ups and downs, but to experience them with us and provide us the hope of an eternal home.  That is the truth that puts joy in our hearts and the hope that drives us onward.  May it do the same for you today, and in that joy, please rejoice with us in what has already come to pass and continue to pray for Bethany’s progress and healing.

Gratefully,

The Houck family.