Monday, December 11, 2017

Coming Back from the Brink of Death

On Wednesday, November 22, 2017, I had to have an urgent, simple, outpatient surgery.  I was discharged that afternoon and cleared by the surgeon to travel up to my parents' house as originally planned for our Thanksgiving holiday.  Little did I know that our holiday plans would drastically change within a matter of hours.  As we began our 2.5 hour journey by car, I was in pain and nauseated--something my doctor said would be a possibility and had instructed me to take Toradol for pain and Zofran for nausea.  Because I wanted to make the car ride as comfortable as possible and given my current symptoms, I chose to take 1 Toradol and 1 Zofran.  Instead of getting better as the journey continued, I got worse.  By the time I arrived to my parents' house, I was feeling terrible.  It was all I could do to sit on the couch and be still.  As the night wore on, I began to feel like my head was in a fog.  I knew something was wrong but didn't have enough cognition left to figure it out.  Twice, I asked my husband what was wrong with me which befuddled him, and he just reminded me I was tired from having surgery that day.  Shortly after that, I lost all conscious awareness and memory.  My husband claims I mumbled responses to a few more of his questions to communicate basic needs, but I have no recollection of any of these discussions.

Tim carried me downstairs to our awaiting bedroom and put me to bed.  At 1 a.m. on Thanksgiving Day, Thursday, November 23, I screamed a "bone-chilling, blood-curdling cry" that will forever be etched into Tim's memory and made him jump out of bed and turn on the light.  He found me in a full Grand mal seizure.  Tim managed to lower me to the floor to prevent me from falling out of bed and put me on my side as I foamed at the mouth with blood running out the side of my mouth thanks to my biting my tongue.  The seizure lasted about 90 seconds according to Tim.  Because I am the one who makes the medical decisions in the house, Tim decided to wait for me to wake up to ask me what we should do.  I never woke up.  By 3:00 a.m., I had vomited all over myself.  After the second vomiting episode, Tim was really starting to get concerned, but was too afraid to leave me to go up 2 floors to awake the rest of the household.  Just before 6, David awoke, and sensing something wasn't right went downstairs to find Tim and me.  Tim hurried David to wake up my parents to let them know we needed to go to the hospital.  That started a flurry of activity as preparations were made for my dad to drive Tim and me to the hospital 20 minutes away in Scranton.  After another vomiting episode in the car, we arrived at the hospital where the real urgency quickly became evident to all.

I was whisked off to Trauma 1 and pounced on by many specialists.  I was unconscious and unresponsive.  However, I had a lot of meaningless movements that showed agitation and inhibited medical care making medical intervention difficult.  I was injected with Versed, a sedative, to assist the staff in getting blood drawn and an IV line in.  I was given a rating of a 7 in the Glasgow Coma Scale which falls in the severe brain damage category.  My pupils were not dilating or responding, I had no signs of cognition, and I had severely abnormal flexion of extremities to give you a small glimpse of how bad it looked.

Due to my depressed mental status and agitation, the decision was made to intubate me and put me on a ventilator.  I was also further sedated in order for a CT scan of my brain to be done to check for a brain bleed (thankfully, the CT scan showed no brain bleed).  My preliminary blood tests came back with the most alarming result showing my Sodium level to be 121 which is dangerously low!  My EKG also showed some issues going on with my heart which isn't a surprise with low sodium, and I was placed on a heart monitor.  At that point, the doctors were thinking it was too late and that I wasn't going to make it, but they made every effort to get me as stable as possible.  The parish nurse was called in to say a final prayer over me.  The doctors began to treat some other electrolytes out of whack and get me hydrated.  Tim said at one point, I had 4 usable IV sites in my arms and had 3 IV sites being used at the same time to get meds and IV solutions into me.  I also had an Nasogastric tube (NGT) down which they were using to get electrolyte tablets into my stomach.  Once I was stable, they transferred me to the ICU (Intensive Care Unit).
My ventilator

I had a foley catheter inserted into my bladder to keep my bladder draining, and thankfully, the thermometer gage on it alerted the staff to a quickly elevating body temperature.  They discovered I had aspiration pneumonia from aspirating on my vomit, so they quickly responded with IV antibiotics.  Tylenol was given via NGT and a fan was brought in to get my temperature down.

As the hours went by, and I remained alive, and my sodium levels started to increase, the thinking turned to maybe I will survive, but will I be permanently brain damaged or will I ever wake up or will I remain in this vegetative state?  I also continued to be very agitated and was allegedly pretty persistent in trying to pull out all of the many tubes and wires going into me.  While I was intubated and breathing on a ventilator, I had to be restrained in order to keep me from pulling the breathing tube out.  Tim claims that didn't stop me from trying to slide my body down so that I could try to reach the tube with my tied up hands anyway.  Who knew I could be such a fighter when unresponsive??? As the day wore on, I passed a spontaneous breathing trial and was maintaining proper oxygen levels, so I was weaned from the vent and extubated and placed on an oxygen mask.
Hand restraints to keep me from pulling out all of my tubes
Breathing on my own but with an oxygen mask

In the evening, my parents brought David to see me.  He sweetly sat by my bed and held my limp, unresponsive hand while I continued to lie there with oxygen going in via nasal cannula by that point.  As the sun went down, I got more and more agitated, so David couldn't stay at my side any longer.  He was such a trooper through the whole, scary ordeal.  [He won't talk about how he is feeling after going through all of that which concerns us.  We pray he will open up when he is ready.]
Overnight Thursday into Friday, I was taken off of oxygen completely
Note: David wanted to help calm me down while he was with me and did my hair.  Do you like my hair dew?
Holding steady

I finally had to be sedated again to keep me calm, and Tim entered another sleepless night waiting at my bedside praying that I would wake up.  Sometime early Friday morning, I woke up for the first time.  I was very groggy and pretty confused.  I was shocked to learn that I was in the hospital then succumbed to sleep once more.  Later that morning, I woke up again to relearn I was in the hospital, discover that I was in a hospital in Scranton (for a while, I couldn't figure out how I had even got up there since I didn't remember the drive up to my parents' house Wednesday night at first), and then I felt panicked when I learned I was in the ICU!  I was also disheartened to learn that I had completely missed Thanksgiving!  It took a few more periods of sleep and being awake before I learned the whole story of how I got there.
Sleeping peacefully after having become responsive once again

By the afternoon, I was allowed to get out of bed for the first time.  It set off the heart alarm making staff come running, but it felt so good to get up.  A physical therapist and occupational therapist later came by to help me walk a little bit for the first time.  I learned a new meaning of baby steps!  I had a visit from one of my aunts and then my parents and sister and David.  I am sure David was so happy to see me awake, and it was so good to give him a hug and truly hold his hand.
Working with the PT and OT to walk for the first time
My second walk was with my handsome date as my escort

I was so much better come late that evening, the doctor decided to move me from the ICU to the main floor.  Ironically, I ended up being moved to their pediatric unit.  It was very weird for me, a pediatric nurse, to be a patient in a pediatric unit!  I continued to set off the heart alarm each time I got up, but at least then, only one person came running.
Saturday morning in the pediatric unit
Enjoying our visit with David

On Saturday, I was feeling stronger and enjoyed a visit from David, my parents, sister, and brother.  We were then given the good news that I could go home that evening if my last blood test results came back fine and after I had a brain MRI to follow up on the findings of the CT Scan.  [Back in 2011, I was diagnosed with a brain lesion.  Cancer, Multiple Sclerosis, Lupus, and a parasite were all ruled out, but the four neurologists I did see couldn't figure out what it was.  The decision was made to repeat the MRI yearly and follow up with the neurologist I chose to be my treating neurologist.  After two subsequent yearly MRIs showed no changes, the decision was made to repeat the MRI every few years.  My last MRI was in 2013.  The CT scan revealed another lesion and changes to the previous lesion, and the MRI in the hospital that day ended up showing definitive changes.  I follow up with my neurologist this coming Wednesday to find out her thoughts on the changes and to discuss any long term damage to my brain that may have occurred from the dangerously low sodium levels.]

At 9:30 on Saturday evening, I was discharged following the completion of the MRI.  I arrived back at my parents' house by 10:00 to get settled into bed for the night.  The next morning, we woke up, packed up the car, and left to head back home swinging by the Lancaster area to pick up Josh for a home visit from his residential center he had been at for the month.  Once we were home, I got settled on the couch so I could enjoy seeing my family together and be able to interact with them as I was able.  It was a happy day despite the fact that I was tired and weak.
Settled at home and happy to spend time with Josh

So many people have asked what happened since all of this had been so sudden and unexpected, so I thought blogging about it would be helpful to give a thorough recounting and perhaps save me or Tim from having to rehash it several times a day.  There is still so much more to the continuing story, but perhaps that will be for more blog posts to come.  We are very much still trying to process all that has happened and figure out what God is trying to teach us.  We remain confident that God will work all of this out for our good and His glory and are praising Him for the miracles He worked in my life the two days when I walked on the brink of death unknown to me in my unresponsive state.  One other thing we are confident of is that God's not finished with me on earth yet!  I still have work to do!

Monday, August 14, 2017

Learning to Let it ALL Go

In approaching almost the 13th year of being a mother of a special needs child, you would think I would be done giving up all control of my son to my capable and loving Savior and that I was done giving up all of the circumstances around his needs to the Author and finisher of my faith.  Apparently, there are ways I haven't given up that control, and God is digging deeper to reveal the areas of my son's life and my own desires that I am still clinging desperately onto instead of entrusting them to my son's and my Maker.

I learned to give up my goals and dreams of serving God as a missionary full time on a foreign field and embrace the full time mission field ministering to my children and other special needs parents.  I learned to give up the anticipation of my son hitting his normal childhood milestones and instead celebrate the small things like not having a melt down in a community outing or appropriate use of coping skills when upset about a non-preferred directive.  I learned to accept that I can't enjoy the pre-teen years when your child becomes more independent while not needing constant supervision but that I can love on my son in more tangible ways and still have him be okay with mom rather than be embarrassed by her.  I learned to accept that I can't relax and spend more time doing various hobbies like my friends but enjoy the satisfaction that I am doing all that I can to make my son's life just a little bit easier.  I learned to give up the dream of seeing my son participate in team events and celebrate the successes of having a positive social interaction that only required a small amount of adult intervention.  I learned to accept his Autism diagnosis and all of the other diagnoses that have been added throughout the years and embrace the unique and perfect way in which God made my son.  I accepted all of this and gave it all to God along the way.  That's enough, isn't it?

Sadly, over the last 2 months of many set backs and discouraging battles, as the few rays of hope have started to diminish, God had to uncover yet another thing I needed to give up: my son's future: his spiritual walk, the outcome of his teen years and progression into adulthood, his happiness, his struggles.

The last 3 years, I have worked relentlessly to make my son's future and development as successful as possible.  I've stayed current with all of the latest research, behavioral interventions, and natural solutions to give him the best future possible.  We have made so much progress and paved the way for the best outcome possible.  I even got to the point that I once again had a glimmer of hope that he could even get married some day.

Then, it all came crashing down!  Puberty raised its evil head wrecking havoc on his body and causing many hardships and setbacks just as the doctors had predicted.  We coasted through the beginning thinking we were going to skip our way past the foreboding warnings of the doctors.  It looks like we won't be so lucky after all.
As we moved into the reality of what the next several years would look like, I began worrying about his future.  I don't want him to become another statistic of a bipolar youth who kills another person or himself in an angry, illogical rage.  I don't want him to get in trouble with the law and end up in a juvenile detention center.  I don't want him to reject and curse God and flee from the ways in which we brought him up.  I want to make his teen years as easy as possible.  I want him to be able to successfully enter the work force and make something of himself. I WANT...

As my son struggles to maintain control of all circumstances in his life even if it means fighting his way into more and more consequences and lost opportunities, I am struggling to give up the control of my son's future.  As he was formed in my womb, God had his days numbered and his course set.  I can't control how God gets a hold of his hurting and fragile heart.  I can't control whether his teen years are easy or frighteningly difficult.  I have no control because I am not God.  This has become a frightening reality to me the last couple of weeks.  It is so hard to give up control.  To sit back and let God be God and do as He sees fit in my son's life and heart.  It's not that I don't trust God and His sovereignty.  It's the fear of HOW God will accomplish His purposes.  My son has already had so many hurdles to cross, and I don't want to see him struggle anymore.  God doesn't promise that life will be easy but that He will work all things for good.  That has to be enough.

Once again, I find myself learning and battling to let go.  Just as I have let go of the other things, I have to do that with my son's future.  It's just a whole lot harder than I had expected.  Abraham had to give up all control of his son Isaac's life and be willing to sacrifice him in obedience to God.  Hannah gave up control of her son Samuel's life to give him to the ministry in the temple. Mary had to give up all control of her son Jesus' life and let him to his Heavenly Father's work even if it meant going to the cross.   It's time I learn to follow in their footsteps and give up all control of my son's life and his future.  It won't be easy, but it is necessary.  Once I do, the rays of light will break through again because the only place for my son to be is in the good hands of the Shepherd of my son's heart.  If I can do that, it won't be all doom and gloom, right?

Saturday, March 25, 2017

It Takes a Village to Raise a Special Needs Child

The last two weeks have been utterly horrific and ones that I pray we will never have to repeat.  Josh came completely unglued emotionally leading to terrible and horrifying behaviors.  It was like reliving the unstable days of years past when his bipolar was not well controlled.  He has been stable for the last 3 years, but since we decided to do a family missions trip because Josh was so stable, it seems as if Satan is pulling out all of the stops to get us to change our mind.

We spent the last week and a half deliberating about whether or not to hospitalize Josh.  It was the most agonizing decision to make knowing he was completely out of control and out of our ability to control yet knowing that if we send him back to the hospital, it will be yet another traumatic experience for him complicated by the fact that the hospital simply drugs the kids to make them calm, keeps them in front of a TV screen all day to keep them under control, and feeds them all of kinds of food that we do not put into our bodies not to mention the gluten and refined sugars that would be served that are huge triggers for Josh and his mood/behaviors.  It was a no-win situation, but we were quickly running out of other options.

Throughout this struggle, we had dear friends from church who regularly checked in with us, sent me encouraging texts including reminders of helpful Scripture passages, and who came at a last minute's notice to allow us to get out of the chaos for a quick breath of fresh air and a chance to celebrate Tim's passing of his Certified Financial Planner exam.  I was encouraged by a phone conversation I had with one of Josh's youth leaders who was concerned about Josh and his behaviors and wanting to know how the youth leaders can help him be more successful in youth group then praying with me that God would help Josh through this difficult time and return to stability.  David's Christian counselor who had done a joint session with the boys the last week and could tell Josh was coming undone sent me an email to check in and see how we were doing and see if she can help in anyway.  Josh's school was extremely concerned and offered their help and support to us and did all that was necessary to help keep him under control as much as it was possible.  Josh's psychiatrist saw Josh on an emergency basis then gave me her cell phone number so that I could contact her at any time (and she walked with us through the battle of whether or not to hospitalize several different days over the last two weeks).  She is also a blessing in that she doesn't always see medication as the answer to problems.  Josh's nutritionist responded to my email asking if she had any suggestions for ways we can help Josh by offering her chiropractor husband's services before his office hours began to do some specialized neurological adjustments to help Josh, and as he did so, he spoke the Gospel to him.  The nutritionist then offered to squeeze Josh into her busy schedule to see if anything from a nutritional and supplemental standpoint could be done to help him.  We had another friend who still willingly came in the midst of the chaos to watch the boys so we didn't have to cancel our plans to go to a concert in Philly that we had bought tickets for back in December.  I had another friend who deals with similar drama in her household come alongside of me and check in with me all while being an encouragement just through her mutual understanding.  We also had many friends and family members praying for Josh and for us, and prayer is just what all of us needed!

I can't imagine having to do these last two weeks alone!  I am thankful for the village God has built up around us to stand with us in trials and support and encourage us.  Had it not been for the support of those faithful villagers, I am not sure what things would be looking like right now.  God through His goodness and providence has helped us have all that we needed to walk through this fire.

With the sudden return to stability Josh experienced yesterday (most likely due to the prayers, neurological adjustment, and supplement changes), we are more than ready to take deep breaths of fresh air.  However as I do so, I am praising God for our village and the way He used dear people to help us get to the other side.  Raising a child with special needs is not for the faint of heart, but it's also impossible to do alone.  It truly does take a village to raise a special needs child, and I am grateful that God has not left us alone!