Abram's Story of Transverse myelitis

I first met Jen because my cousin's baby developed Transverse myelitis. I was they only person in my family who knew how to navigate this new world of Special Needs so I began teaching my cousin what to do. I spent hours looking up and researching Transverse myelitis, I also began to look for mom's of children with TM (Transverse myelitis). I ran across Abram's picture and contacted Jen I asked her a ton of questions and have been the middle man (or should I say woman) between Jen and my cousin every since. Jen is a wealth of knowledge about TM and how to advocate for your child. Here is a story of a normal little life turned upside down, and yet made whole and happy

 

 When the topic of children came up between my husband and I, it was never a discussion on having them, that was certain. It was how many we were going to have. See I wanted 4 and he wanted to have 2. So we came to an agreement that 2 was enough and if the Lord blessed us with more then so be it.


I always joke that Abram is my second and third child. I got all his firsts twice. I got to watch him gain control over his tiny body, roll over, sit up, etc. All the firsts that parents look forward to, I got to see twice with my son.



I had a very normal pregnancy and birth with A. Nothing abnormal at all. He wasn't ever sickly, grew just like he was suppose to. He crawled at 4 months and by 7 months he was walking. I breastfed him and since I work full time he slept with us. Around 8 months old we (mostly I) decided that it was time for him to sleep in his crib and sleep through the night too. We used the same routine with A that we used with our Gen. My husband started getting up with A because he didn't equate Daddy with food. Things were going great and Mommy was sleeping though the night!






7 am December 3, 2009 our lives changed forever. You know the feeling you get when your baby sleeps though the night for the first time. You wake up, it's light out and your like OMGosh! Then you have this debate with yourself about why you slept though the night. Then you wake your hubby to go check the baby. The words you never want to hear were spoke that morning “Oh God, Jennie you gotta get your car. He's not moving.”






I rushed to the ER and by rushed I mean I turned a 45 minute drive into about 20. Then we waited... Our town is small and our hospital is small. The closest children's hospital is 110 miles away and we couldn't get an ambulance to come get us. We decided to drive him ourselves. The hospital was kind enough to keep my car seat, we folded the seats down in my SUV and laid him strapped to a board in the back of the car, hung his IV bag from the coat hook and we were off. It was the longest drive of my life!  




At 9 pm on the 3rd after 4 hours of MRI and X-rays Abram was diagnosed with Acute Idiopathic Transverse Myelitis with lesions from C2 to T4. We spent 18 days in the children's hospital, 7 in PICU waiting, watching and wondering why he was still breathing. Then 11 days in Oncology. He gained 12 lbs from the steroids and possibly because all we did was nurse... We did 7 treatments of Plasmapheresis and still nothing.




He is completely paralyzed from the neck down. Couldn't make sounds couldn't move, nothing. Next came the hardest decision I will probably ever have to make in my live. They wanted to give my baby chemo. They handed me 2 pages of side effects and told me to let them know in the morning. I've never cried so hard in my life. I didn't tell a soul. The next morning the Dr's came in and took my baby away to hook him up to machines could change his life in so many ways and some of them real bad. We left the hospital 18 days later with a 5% chance of him ever walking or talking again. It was like having a 28 lb newborn all over again.



Abram turns 4 this week and though life has been a roller coaster for us he is amazing. In the 3 years since being diagnosed with TM he has regained all movement in his body although he can't feel anything on his right side and little on his left. The last MRI showed permanent spinal cord damage at C4 and T2 with continued swelling between the two points. He has days where he has to be on O2 because his muscles aren't strong enough to breath well if he is tired or sick.




 He has a wheelchair for distances or when it's to dangerous for him to walk. We live life to the fullest every minute we can. We camp, I carry him in a hiking pack so he doesn't miss out on hiking, rides ATV's and LOVES trucks! Sure life has changed for us, I mean who ever thought I would have a Urologist, Neurologist and PM&R Specialist on my speed dial! 

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A Life Worth Living

If you have ever had a ‘Do Not Resuscitate’ order (aka: a DNR) shoved in your face, you know that it is an experience you are unlikely to forget.  If the DNR form in question concerns your child, well, let me tell you, that goes double.  I’ve had the awful experience three different times for My Mighty Z, and I remember each and every time vividly. 

My husband and I were first presented with a DNR when Mighty Z was 3-months old.    It happened again when she was 6-months old, and it happened last when she was 1- year old.   The doctors who presented us with those DNR forms all pretty much said that she would have no quality of life and that we were young and could have more children. They said that they could make her comfortable so wouldn’t suffer.  The doctor who recommended this course when Mighty Z was 6-months old didn’t stop there, though.  Instead, in order to show us what the rest of her life would be like, he set up and accompanied us on a visit a bedridden 17-year old kid in state foster care who was living in unquestionably horrific conditions.  Even though that poor boy suffered from a different disease than our Mighty Z and was born to a family that was unable (or unwilling?) to care for him, the doctor assured us that that was what we and Mighty Z had to look forward to, so it would be easier to just let her slip away.

Really???  Not so much, Doc.   I was horrified and offended that those doctors would even suggest a DNR because it has never been evident to me that Mighty Z’s was headed for a life not worth living.  That being the case, I have never signed any form that would relieve her physicians from the necessity of saving Mighty Z’s life.

I am sure many reading this blog have also at one time or another been presented with a DNR, as it seems many doctors gravitate to a DNR and try to lead families of medically complex children down that path.   In my opinion, they often do so because it is an easy ‘get out of jail’ card for them.  Looking back on my own experiences and the anecdotal evidence of my friend’s stories (some of whom are facing the issue right now) I am shocked that doctors still bring the subject up and recommend this course so regularly. 

My cousin was recently offered a DNR concerning her child who has Transverse Myelitis, and she asked me when was the right time to sign it.  Here is my answer:

“There is no answer.”  The decision to sign a DNR is a very hard choice to make, and only the family involved can determine whether or not it is the right course for their child, so only they know when the time is right to sign a DNR.  I don't think it is something you can plan for – I think that when it happens it happens. 

We have to support and respect each other’s journey.  I know many children who have made an impact on the world around them simply because their parents would not sign a DNR.  I also know several wonderful mothers who when faced with a DNR, signed it.  Who was right? Who was wrong?   The answer is that they all were right, as only the families involved knew when the time was right to let their child go. 

As for me, I’m so glad I didn’t sign a DNR concerning Mighty Z when I wasn’t sure it was right.  As you can see for yourself, Mighty Z’s is still a life well worth living:  

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