Friday, March 21, 2014

March 20th, 2014. . . Update Part One -- Hope's Baclofen Pump!

Hello dear praying friends and family!  We had four doctor appointments last week, a series of x-rays, and a WHOLE lot of information.  We have been praying and sorting through it, doing some of our own research, and seeking the Lord's direction, and we are eager to share with you where things are at.  As there is A LOT of information, I am going to break it up.  I will start with the internal Baclofen pump and our visit to the neuro-surgeon, and then touch on the other three doctor appointments related to Hope's severe back/hip scoliosis in my next post.  For you to understand the full impact of this update on Hope's Baclofen pump, I will first need to go back. . .


It was February 7th, 2012 and we, along with all the medical doctors (neurologists, physiatrists, ICU doctors, neuro-surgeon, pediatricians, nurse practitioners, and more!) were fighting to save Hope's life again. . .

In mid January, about one month after Hope's initial respiratory and cardiac arrest resulting in a severe anoxic brain injury, she had started with symptoms that were both horrific and confusing.  Some thought perhaps just part of her recovery from such a severe brain injury, and others a life threatening condition as a result of permanent brain damage.  Hope had started having full body muscle spasms (kind of like a Charlie horse, but in every muscle all the way from her head to her toes), called dystonia.  These spasms have been documented to be so severe that they break bones.  Hope would have these spasms one after another for hours at a time (often 12 hours) until they could get enough sedating medications on board to knock her out.  Trevor and I would stand on either side of the bed for hours trying to hold her limbs in positions that would hold off the spasms for as long as we could, a few more seconds, but every second mattered in the agony of watching your child suffer like this.

Then to make matters worse, Hope started to have parasympathetic involvement which was profuse sweating (again Hope could not communicate at all back then, but other documented cases in adults have stated that it feels like your body is on fire), elevated blood pressure (too high to even register), and elevated heart rate (in the 200's!).  Our body's have a flight or fight adrenaline response to stressful circumstances for a few seconds, that God has created to allow us to do some amazing things in that crisis moment of need. . . however, it was like Hope's body was in that adrenaline rush state for hours!  A body can only sustain that kind of stress for a time, before organs start to fail.  Hope's body was showing signs of overload, and her life was in danger.

Her severity of dystonia was extreme. . . the doctors told us that she was one of four cases they had seen this bad in the last 10 years.  The first child died before they figured out what was going on.  Another ended up with permanent kidney damage and on dialysis.  The doctors had come up with a five-medication cocktail trying to keep it under control and save her life, but not only was it not effective in keeping the dystonic waves from coming, the doses of medication were so high, that she would never be able to leave the hospital on them.  The doctors then did an intratheccal Baclofen epidural infusion to trial whether an internally implanted Baclofen pump would treat her condition.  The trial failed miserably to control the dystonia, and only resulted in more severe complications that now made things even worse, one of which was a bad cerebrospinal fluid leak resulting in the months of nausea that would ensue.

As horrible and scary as all of this was, it didn't come close to the pain of watching your child suffer in a way that I had NEVER seen before, listening to her scream through unthinkable pain hour after hour, with no relief.  It still makes my stomach turn when I remember or think about it.  We would play the Hidden In My Heart Scripture lullabies CD over and over, relying on God's Word to give us the grace and strength to go just another minute, and another minute. . . I could share a lot about that 3 week period of the worst pain we have ever experienced, but that would be a book!  So, I will jump now back to very early morning of February 7th, 2012. . .

My tears fell on the perfect tummy of our beautiful 9 year old little girlie, as I rubbed her tummy and cried out to the Lord, "Please, please don't let this happen.  I don't want this Baclofen pump in my precious little girl.  I don't trust it to work.  You can save her another way!  Please God, I can't watch her suffer any more.  Just take her home to be with you. . . we're willing to release her from this world of suffering, as much as it will hurt to lose her, please, please don't let her suffer anymore."  I heard a quote recently by Nancy Leigh DeMoss. . . "If we knew everything that God knew, we would choose His will EVERY time!"  I could only see backwards, not forwards. . .

Looking backwards, on the eve of Hope undergoing the Baclofen pump implantation surgery, she had one of the worst nights of all our lives.  She was in the ICU screaming in agonizing pain and spasms.  They were giving her a plethora of sedating medications on top of the 5 med cocktail and they said they had no where left to go, but to put her back on a ventilator, and yet her spasms continued.  She had lost the last two IV sites she had in her bruised body covered in poke holes as the spasms caused her IV's to go interstitial or fall out of the vein.  The surgery was scheduled for 7 am, they were coming to get her at 6 am, and yet her spasms continued.  They were desperate to get the spasms under control before surgery.  Finally Hope had a massive emesis (throw up) around 3:30 am, and after a big clean up, with enough sedating medication on board to knock out an adult, Hope's exhausted and traumatized body finally passed out and the spasms stopped. . . for the moment.  And so I cried and pleaded and begged the Lord for mercy as I rubbed her perfect tummy. . . I could only see backwards. . . BUT He could see forwards. . .

The Baclofen surgery was a success, however that first night after surgery, she almost stopped breathing, so they had to drastically lower the pump (from 400 to 100 mcg/day) and risked her going back into dystonia.  But the Lord poured His mercy over Hope's body and our hearts, and the dystonia held off as they slowly increased the rate of her new pump, as her body adjusted to this potent medication.  The pump was slightly larger than a hockey puck with wings, implanted under the muscle of her right lower abdomen, a catheter that tunneled under the skin from the pump around to the lower back, where it is anchored and then goes into her spinal cord and threads all the way to the top of her spine where it continuously infuses Baclofen, a muscle relaxant.  Hope left the hospital at a dose of 800 mcg/day, with the expectation that she would need to yet be increased to 1000 mcg/day.  When I asked the neuro-surgeon what symptoms we would see if the pump needed to be lowered, he replied, "That will never happen."  I asked him, "Well, hypothetically if someone is getting too much intratheccal Baclofen, what would you see?"  Again, he answered simply and sternly, "THAT WILL NEVER HAPPEN!"  We could only see backwards. . . but God could see forwards and He was going to work a miracle. . .

. . . another miracle in the list of "NEVERS" that God has dealt with in Hope's life. . . we were told that Hope's Baclofen pump would never be turned down, let alone be unnecessary.  The neuro-surgeon even this past August wanted to at least keep the pump at 50 mcg/day.  But the pump clinic allowed us to turn it down in November and Hope is currently at 3 mcg/day. . . a dose considered non-therapeutic, but necessary to keep the pump from malfunctioning. Hope's muscle tone is the best it has ever been and she is steadily and gradually growing in her coordination and good strength, with very little abnormal muscle tone or involuntary movements.  She is flexible and able to fully bear her weight when standing getting flat feet (many kiddies with her severity of brain injury have foot drop and are not able to get a flat foot when weight bearing without considerable pain as the muscles shorten).  And this being on no medication and the Baclofen pump at a non-therapeutic dose!  The pump clinic nurse calls Hope, "one of a kind!"  Our God is one of a kind, for certain! 

Our appointment this past week with the neuro-surgeon was to figure out, "now what."  Trevor and I did not want to go in demanding anything, but rather humbly share our concerns and observations of Hope to then work through what the best next step should be.  One of the concerns with continuing on this low dose is that it is policy to access the pump with a needle and switch out the Baclofen med every 6 months, and now with Hope's Baclofen dose so low, it would require an extra needle and withdrawing cerebrospinal fluid (CSF) each time, putting her at a higher risk of serious infection, and additional painful procedures.  We had no idea what a neuro-surgeon who said, "NEVER" would believe was the best course of action at this point.  Could her dystonia come back and she might need it again?  Should we just switch out the med for normal saline and at least eliminate the CSF access each time?  What about the daily rib pain on her right side only that Hope has had for so many months now, and is only getting worse. . . she tells us that it is from her ribs rubbing on the pump. . . but we were told that shouldn't be a problem. . . could we dare to hope that we could convince him to just take the pump out?  There was talk of doing that at the same time as Hope would have back surgery for her scoliosis. . . was that a good idea to do?  So many questions!

We were greeted by the pump clinic nurse first after we arrived for the appointment, and the first thing she did was to quickly review three options for how we start the process of removing the pump!  After she left, Trevor and I looked at each other with amazement. . . it was already decided that the pump could come out safely under the neuro-surgeon's recommendation?  We were directed to the room and then spent a while discussing everything with the nurse practitioner and the pump clinic nurse.  After hearing everything that Trevor and I wanted to share as well as questions we wanted to ask, the nurse practitioner turned to Hope and asked, "And what do you want Hope?  What do you think about all of this?"  Hope replied simply and so sweetly, "I would really like to get my pump out because it causes me a lot of pain every day."  Nothing more needed to be said. . . we were almost in tears as the reality hit us. . . Hope's pump is going to come out!  Even though we never stopped believing and hoping that God would heal our dollie girl, we could only see backwards all the way through this journey, but God was seeing forwards and He had a plan to miraculously heal. . . not in the timing and way I would have desired back on Feb 7th, 2012, because I didn't know and still don't know everything that God does. . . if I had or if I did now, I would have chosen His will EVERY time/EVERY step of this painful journey.  I'm so thankful that God says "NO" to some of our prayers and begging, when He has a different and better plan/way, EVEN when I don't see or understand His purposes or timing!

The discussion needed to happen as to timing of this surgery to remove the Baclofen pump. . . would it be with Hope's back surgery (that was scheduled for April 28th next month), would it be a separate surgery, or would we do it in pieces (pump first and catheter later, because there are potential serious complications of having the catheter removed during the back surgery due to the opening in the dura of the spinal cord and the potential for infection or a CSF leak, which Hope had terrible complications with last time).  Our preference now was to do the pump removal surgery separate from the back surgery (although we once were asking for them together to eliminate the number of surgeries required, especially since they both would involve the same back incision).  The neuro-surgeon was willing to do his pump removal at the same time as the back surgery, but he was happy to do it as a separate surgery when the nurse practitioner filled him in on a summary of our discussion and concerns, and especially based on Hope's request to have the pump out as soon as possible due to the daily pain she is experiencing.  To further affirm our decision to do it as a separate surgery, the team decided to keep her overnight in the hospital for 48 hours (rather than the typical 24 hour minimum) after the pump removal to keep Hope flat in bed for that entire time, thus maximizing the dura's ability to seal off and prevent CSF leakage and the complications that could ensue.  (This thinking conflicts with the push of post op back surgery where they want you up and weight bearing as soon as possible, preferably at the 24 hour mark.)  We were told to wait for a call to schedule the pump removal surgery and we received that call on Tuesday this week. . .

Hope will be getting her Baclofen pump removed on April 15th!  We had hoped for sooner, but this was the only date that the neuro-surgeon had open in April.  There is more to this story, but that goes on to the back scoliosis surgery, and I will discuss that in my next post. . . hopefully soon!  But for now, please first and foremost PRAISE the Lord with us for this miraculous work that He has done in her body and healing. . . all glory goes to Him as He is so worthy!  What a faithful and mighty God we have!  Finally please keep Hope and our family in prayer as we prepare for this surgery, for the surgery itself, and for post op complications and healing.  Hope is actually excited about this surgery, and we have jokingly been referring to all the "lasts" that we will have with the pump over the next 4 weeks, and getting ready to say goodbye to Hope's hockey puck!  Are we Canadian or what. . . putting "hockey pucks" inside us. . . eh!  : )  Please also pray for strength for Hope as she continues to be in pain daily. . . last night when standing at the sink brushing her teeth, she said that it felt like the pump was cutting her inside.

Thank you for sticking with me for this rather LONG post!  I pray that it was worth it to go back and hear where this Baclofen pump journey started, so that you could more appreciate what it means to be having the pump removed in less than a month, and so that you could be all the more in awe of the God over it all!  I'll leave you with this verse that Trev gave me that truly says it best, dear ones. . .

Many are the plans in the mind of a man, but it is the purpose of the Lord that will stand.  Proverbs 19:21

God, YOU are GREAT and GREATLY to be PRAISED!!!  And dear prayer warriors, YOU are LOVED!!!


7 comments:

  1. Indeed we have a great God. Will be praying for Hope and these surgeries.

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  2. Praise and Glory to our Almighty Father!!! Hope, you are truly a miracle and you have an amazing family walking this journey with you. May all of you, and all who love you, continue to know the full power of our Lord and Saviour!!!

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  3. Praise God! It is so often hard to see forward, but that is where God is looking for us isn't He? I am so happy for Hope and your family. I will be praying that it all goes well.

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  4. WE love you guys. Thank you so much for sharing. I read this to Mark and the boys at suppertime and we are praying for you.

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  5. Thanks for sharing... made me teary remembering all that craziness 2 years ago... made me smile hearing how much better Hope is doing and how God has done (and is continuing to do) miracles in her heart and body. Love that quote by Nancy Leigh DeMoss. . . "If we knew everything that God knew, we would choose His will EVERY time!" Thanks for sharing! Miss you, love you guys. - Greta

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  6. I am sitting here reading about "the death of meaning" which I will follow up with a paper on the topic and am now simply overwhelmed with the unexplainable magnificence of our great God! No thought, be it sociological, anthropological, psycholanalytical, or philosophical can begin to unravel the glory and power of our awesome God! Thank you for this update and the beautiful picture of faith you have shown. You are so loved!

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  7. The sharing helps me to know how to pray...the sharing takes me to praise. I never mind the length...for they speak of His majesty His ability to do the unthinkable...to take away the "that will never happen" ...some of minister among hopelessness, brokenness and people captured by decease, and dysfunction of the mind and soul (I do)...and the long messages are perfect for my soul...the inspire me to praise the Lord so much more, and to believe Him inspire of the "never will happens

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