Thursday, June 9, 2011

The time when he was diagnosed with a rare kidney disease

(taken right before Brianna was released from the NICU, and Aaron's diagnosis followed shortly after)

I decided to write down some stories.  The hard stories about Aaron's health that I usually talk about after our 4th conversation (or 2nd depending on how much I love you already.) This blog is so much of a journal to me, so it seems only fitting that I record some very significant aspects of our life.  I am finding that time (how old am I again?) has changed my feelings of remembrance a bit, so it's time to write them down, I think.  And I also think this will be very hard for me to do.  But that I should.


It was Thanksgiving Day 2001.  Brianna was 2 weeks old and a week prior had come home from her stay in the NICU due to some breathing issues after birth.  We were going to the farm and I was the first to get up and get ready.  I had just stepped out of the shower and put on my nice clothes (let's be honest--nice maternity ones that would fit) to celebrate the day with family.  Brianna began to wake up, but I still needed to dry my hair and put on make-up, so I placed our tiny babe in the nook of Aaron's arm to be with him.  I glanced at them as I was putting on my mascara in the mirror.  I loved seeing them snuggling together and my heart was so very happy. 

I called for Aaron to wake up because we were on a schedule.  He yawned a bit and began stretching and making some wise-cracks with me.  And then out of nowhere he began to make some awkward movements.  His arms started shaking and I thought he was being funny so I told him to knock it off as I laughed.  But as another second passed his physical jerking became more severe and I immediately lunged for Brianna who I had placed in his arms.  Within seconds I became a mother bear protecting her cub and I was worried about the safety of our child...even if he was only playing in fun.  I grabbed her and then as I turned my head back to yell at him for acting that way, I slapped his face.  I was so shocked that his funny acting out could have hurt her and it was literally pure instinct. 

After I did it however, I gasped and my heart sunk. I couldn't believe I had even thought that he would play too rough with our baby. Suddenly I knew something was very wrong and that his physical erratic movements were not fun and games.  I realized in a shocking instant that he was having a seizure.  

I moved Brianna off the bed and screamed his name.  I didn't know what to do and I immediately called 911.  He was shaking uncontrollably--minutes?  Seconds?  I don't recall.  After the ambulance arrived and took him away I sat in shock thinking about his unconscious stillness on a stretcher.  

It was so frightening. My strong husband was in a position of physical weakness and it took all the strength that I had inside me to get myself together in that moment.  I called his mother and asked if something like this had ever happened before?  The answer was no and she rushed over immediately to help me get items together and drive to the hospital.  

When we arrived he was very groggy and unaware of what had transpired or why he was there.  It wasn't until hours later that we found out a probable cause of his seizure, which was extremely low levels of potassium and magnesium in his body.  He had been in school full-time, working full-time and with the added stress of the birth of our daughter/NICU, the doctors felt that it might have caused his situation.  He stayed for another week and then once his levels were up and maintained, they released him to go home.

That night at exactly 1:04am I awoke startled and turned on the light on our bed stand.  A second later he began shaking again even more violently than the first time.  I called 911, said hello again to the same EMT's, and packed my bag quicker with the sense of deja vous fresh and certainly unwelcome.  Once again we left for the hospital with uncertainty.

After a few days of unanswered questions it was decided that he would be sent to Emory Hospital in Atlanta because they had more knowledge and resources of what this might be.  With a newborn, I wouldn't be able to stay with him in the hospital, so thankfully his Mother took my place and basically lived there for a few weeks. It was difficult being 1 1/2 hours away and honestly not knowing if he would be okay.
I was a single mom at that time, and I do not exaggerate when I say that my daughter was my saving grace.  She was unexpected and unplanned and I believe without a doubt that she was supposed to be born at that time to support me which she did in newborn fashion. I couldn't help my husband or be near him, so my attention was spent on nurturing her instead of feeling sorry for myself. One particularly hard night she slept for 10 hours straight and I was able to rest. Tell me now, what newborn does that?  She knew.  My prayers were being heard in my weakest moment and she knew.   
Emory is also a teaching hospital, and because Aaron's diagnosis was still unknown, many students came to visit and to check him out.  He played mind games with them a lot, often making up symptoms of hallucinations and then letting them know he was teasing them at the end.  Really, considering the severity of the situation, he handled it very well and it was amusing to hear all the student responses!

Finally, after a few weeks he was diagnosed with Gitelman's. 1 in 40,000 people world-wide are diagnosed with this rare genetic kidney disorder. What appeared to be seizures were in fact severe muscle spasms called teteny. The 2nd teteny was so intense in fact that it broke his back.  Basically, potassium and magnesium pass through the kidneys rather than being absorbed into the bloodstream. Oh-- and there is one other teeny tiny fact.

There is no cure.

It was like the earth had shifted.  Not only would he have to take large doses of medication every day, but for the rest of his life.  Not doing so would create a play by play of every incident before.

Without warning my husband was no longer invincible, and I know for a fact that this news was much harder on him than on me (which was painful, let me tell you.)  He was 24 years old.  A new husband and father with endless opportunities that come with youth. Out of nowhere, those opportunities seemed to vanish.

We struggled with these facts for a long time. The normalcy of having a disease that will be with you for the rest of your life was and still is an adjustment.  The massive amounts of medication.  The many doctor visits.  The feelings of physical inadequacy and pride. It's all there, laid out in front of you without a choice.  But at some point, you have to own what you have been given because it is yours to keep. And he has done that...courageously so.
He came home right before Christmas and I cannot even begin to describe how wonderful that moment was.  We knew what was wrong and we knew where we were headed.  And we were filled with gratitude because we saw so many miracles at that time:  The timing of my pregnancy and Brianna's birth, the moment that I awoke suddenly prepared for his 2nd attack, the fact that the leading doctor in this rare disease was a mere 2 1/2 hours away for consultations, the rallying of friends and family members to help in any way that they could. They were all tender mercies during such a hard trial.   

We have a Christmas ornament that my MIL bought us while she was staying at the hospital with him.  We hang it up every year, fondly even, as we remember that season.  It was a time of fear and a time of strength. It has been a very difficult road to travel, but we don't know any other way. Looking back now, we are so grateful for the preparation that it held for the future trial (his diagnosis with MS) that we would soon have to face.


Susan Anderson said...

A difficult trial for both of you, but it sounds like you are handling it well.

I know the feeling of being diagnosed with a chronic illness, and the adjustment period for both partners in a marriage is long. I took us about five years to sort of renegotiate the balance in our marriage, but we persevered and got it right.

Sounds like you've done the same.

Beautiful written.


Annette W. said...

We know from experience (three between two kids...only one serious) that seizures are scary. Even though his were not brain related, still scary.

Chronic illness is difficult for all involved. Glad you can find blessings along the way.

When my daughter was sick (heart...cardiac arrest at 17 days), after she came home I began writing about it in letters to her since I didn't know if I'd always remember those details. It's amazing what I have already forgotten. I did the same for my son after his three hour seizure.

Debby said...

Very scary uncertain times for you and your family. Sounds like more is to come. Good that you are writing about it. It is amazing how strong you can be when you have to. (((((HUGS))))

Christina said...

What a scary experience, but also a wonderful time to look back and see the Lord carrying you through your trials. My husband also has a chronic illness (although not as rare) and it is a struggle sometimes to figure out the best ways to support him as it is sometimes such a personal struggle for him. Thank you for sharing this chapter of your lives- I'm looking forward to more of your lessons learned.

Jenny P. said...

So glad you're writing this down, Carrie. You know, I think your writing is most beautiful when you are pulling it from the deepest corners of your heart. You are a gift and I'm so glad I know you.

NatureGirl said...

As hard as I am sure that it was to remember all of those details and put it into will be thankful that you did it. You inspire.

Amy said...

Thank you for sharing this very personal, powerful, and very, very difficult time. You are so beautiful, inside and out and I have so much awe and respect for you and your positive look at life.
And your hubby, what a soldier!

I can't say that I understand what this must have been like. In our marriage, I was always the one with hospital stays (appendicitis, gall bladder, childbirth), and none of those were chronic illnesses. All I know is that with any trial, any pain, any hurt or fear, the gospel gets us through. I can tell you already know that. Your testimony is strong and beautiful. Thank you again for writing this down.
I really do hope that one day we can meet in person and I can give you a ginormous hug and thank you with spoken words for your wonderful example and friendship!

Stef said...

You are a rock! I can't even imagine how you made it through. It says alot about the kind of people you are your husband are. (I was impressed that you slapped him, myself..wink). Thanks for sharing this. I am sure that it pulls at your heart just to relive it. Thanks!

Jocelyn Christensen said...

You're pretty amazing, you know?

likeschocolate said...

WOW! Thanks for sharing this with all of us. I agree that Brianne was your saving grace. A gift from God to help you get through this time of your life.

sarah said...

I'm so impressed that you have found a way to count your blessings instead of focusing on the negative. Huge hugs!!!! And thanks for sharing- such an incredible story!

Charlotte said...

Wow. What a frightening experience. I'm impressed you were able to tell it so well.

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