A Mother's Day Story: The love of a mother and her son's battle with Fibromuscular Dysplasia.

Today my guest blogger shares with us her experience as a mother having a child with Fibromuscular Dysplasia. With Mother's Day around the corner it is a honor to introduce you to Amanda Grunewald and her son Jake. Happy Mother's Day Amanda! As we continue our fight to reinstate our research we ask that you sign and share our petition. 

Jake and Amanda Grunewald

Hello to all,

This is the story of my son Jake and his battle with Fibromuscular Dysplasia.

I have a beautiful son named Jake.  He is my "MIRACLE" child.  I held him in my arms for the first time, and instantly felt overwhelming love.  A love that only a mother feels when her child is born. I made a promise to always love, care, and protect him to the best of my ability.  My vision of protecting him was kissing his scrapped knees, or hugging him when he fell and to comfort him when he had a bad dream.  I was worried about his first cold, earache, runny nose, and fever.   I was a new mother and I wanted to be prepared.  I knew that these were some of the small challenges I would face with being a mom.   I was so excited for the major milestones a child goes through, such as rolling over, walking, talking, and riding a bike. Teaching him about his ABC;s and 1-2-3's. My life was perfect with my little guy.  I couldn't imagine my life without him. He was growing, walking, talking, and most importantly HEALTHY!  I was fortunate that I had 2 years of  this "normal" life with Jake. 

Amanda and her newborn son Jake

All this seems to have stopped at 2 1/2 years of age.  My otherwise happy, healthy boy would cry because he had a headache.  While the mutters of other children were outside playing, Jake was

on the couch with a cold washcloth on his forehead.  Tylenol, Motrin, baths, or even the washcloth did not seem to help him. We went to the pediatricians and they gave us antibiotics and then more

antibiotic's.  I think they felt that I was so nagging that they wanted me to be quiet and quit calling the office.  Fast-forward a few months and Jake still has his headaches.  Noticeably when he would exert himself.  At his three year checkup with the pediatrician  on September 11th,  the nurse was checking his blood pressure.  She said under her breath that's not right.

Then took of the blood pressure cuff and placed in on the other arm.  That's when she informed me that he had high blood pressure -- 146/92.  She told me that she felt he was hyper and worked up with the doctors visit and would recheck it prior to us leaving.  Needless to say I was worried.  Jake may have been hyper, after all it was his birthday, but worried- NO!  The pediatrician then informed me that we should see a Nephrologist and for me to check his blood pressure daily. She also felt a CT would be helpful, but thought it would not show any reason as to why Jake was so hypertensive. Then I received a phone call that changed my and Jakes life. I never envisioned what we were about to face. 

Jake

He had an enlarged Basilar artery. They needed to get more imaging which resulted in an MRI.  Jake needed to be sedated for the MRI seeing that he was only 3 years old.  The nurses and the

MRI tech let me sit in the MRI room with Jake.  As I was nervously remembering the traumatic IV start I heard the nurse call a Code 333.  Knowing what this meant I looked at Jake and he was not breathing.  He was BLUE!!!!  I was so scared I jumped up and started to shake his feet and yell his name.  That's when the room filled with doctors and I was escorted out of the MRI room. 

In the hallway I was sobbing, worried my son was gone.  I prayed and prayed for God to see him through this.  And that's just what he did.  Come to find out the nurse had administered to much Nembutal which caused Jake to have a very low heart rate, and stop breathing.  Because of the complications the MRI was not completed.  This prompted Jake to have general anesthesia.  The MRI was completed under general anesthesia successfully.  He was discharged from the hospital and he was doing well.  The doctor had told me that he would be unsteady for up to 12 hours and sleepy.

I was constantly checking on Jake to make sure he was doing well at home.  I had him on the couch, and when he wanted to eat I put him in a highchair.  That's when I noticed that his upper body was leaning to the right.  I would sit him straight up in the chair and he would lean to the right.  That's when I felt something was not right.  I stood him up and he fell over.  He could not walk. His whole right side was not working.  I brought him to the hospital and they blew me off stating it was the anesthesia.  It had been over 12 hours since he had the anesthesia.  Jake recovered and was able to walk without falling over and leaning to the right.  

Jake and his fuzzy friend.

During the next couple of weeks I changed pediatricians (because I felt she was not helping us) and saw the Nephrologist.  Jake had renal Ultrasounds and that would show that he had hydronephrosis in his right kidney.  The flow was normal.  This however did not explain the HTN.  We saw a Neurosurgeon and he went over the MRI images with us.  He stated that he was uncertain what Jake has but is very complicated and he would refer us to Cincinnati Children's Hospital.  We drove the six hours down and saw a neuro-radiologist.  He performed and angiogram. Jake had underwent a previous Angiogram in Grand Rapids and the radiologist stated that the carotids had too much artifact.  After the six hour Angiogram was done the Doctor came out and informed us that Jake had Fibromuscular Dysplasia.  He told us that there was nothing they could do for him.  I asked about his prognosis and he told me that he "did not know, but to take him home and treat him as a normal kid."  We left Cincinnati hopeless and discouraged. 

 Being a Nurse I felt that I was not going to just wait to see what happened.  If I did wait then my son could/would die.  My impression was he would.  I looked to the internet for information and educated myself about FMD and looked to any doctors that would look at Jakes radiology films.  I sent them to Australia, Tennessee, and Boston.  I spoke with many Doctors and all ended up with I'm sorry there is nothing I am able to do.  BUT I WOULD NOT GIVE UP!!!!

I found this Doctor in Boston that helps children with Moya-Moya.  He looked at Jakes films and told us that we needed to come out to see him as soon as possible.  A week later we were in his office discussing Jakes findings.  He recommended that we repeat all tests including, MRI, CT, Renal Ultrasounds, Carotid Doppler, PET scan and Angiogram.  After a grueling week in Boston the tests were completed.  The Doctor confirmed the diagnosis of FMD.  That's when She told us that she could perform surgery on Jake but with fatal risks.  If she were to perform and angioplasty of his right carotid and it dissected then there would not be a large enough stent to fit his carotid.  This would prove fatal, being his left carotid was already dissected.  She told us that there would be a 50/50 chance of death or success.  She gave us the option of going home to think about it.  We prayed on it and felt the best option was to go with the surgery.  If we were to bring him home he would surely die.  Surgery is was. This would prove to be the longest 6 hours I have ever been through.  After the six hours the doctor had come out to speak with us.  The angioplasty was a SUCESS!!  But Jake was not in the clear yet.  The next 24 hours would prove that the procedure did not cause any permanent damage.  Sitting in a chair next to Jakes bed in Boston's ICU for three days was a relief but scary at the same time.  I was praying that we saw the last of this HATEFUL disease FMD.

Determination!

For the most we have seen the worst of this disease.  Jake still has TIA's, learning problems, and PTSD.  He has been through a total of 22 procedures all except 2 being under general anesthesia. 

He has seen more doctors than I can even count, and had so many painful experiences.  He is a pro at  Angiograms. MRI's, CT's, lab draws, and Carotid Doppler's. 

 At his young age of 17 he has endured what I could never have.  He has given me the strength when I was at my weakest.

 He has allowed me to cry,  and hold him.    I am so blessed that the Doctors in Boston took a chance on Jake.  If they hadn't I am certain he would not be with me today.  Even though there is so much more to Jakes story this is just a glimpse of his life.  I thank all of you that take your time to research, learn, raise awareness about FMD.  Jake is just one story of many but to me he is my story.

 God Bless,

Amanda Grunewald