Baby steps...literally!

He no longer needs oxycodone and his pain is well-controlled on gabapentin & amitriptyline. We are so happy! 

Jayden has shown a lot of improvement in one week! He can crawl up and down the stairs, stand for 30 seconds holding on to the coffee table or wall, and is improving a lot in therapy. 

Back to PT!

David his amazing Therapist today is SO impressed with Jayden's drastic improvement over the week. Balance is improved. He's able to close his eyes and stand for at least 30 seconds. 

Jayden got a Christmas Bear today at Gillette! They are so amazing here! Santa is here greeting kids & talking with Jayden. 

He is even climbing stairs without assist! He went from walking on the 15th for short periods to walking everywhere! He even skipped the red wagon today which used to be his favorite part of therapy! 

Disney World

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We decided to keep our trip that we had planned to Florida to see family & go to Disney World. It was a lot of work, but it was worth it! Jayden was so excited to be here, he tried even harder to walk & see his favorite characters. 

With little sister by his side, he made his way around to park! 

He got to meet Elsa & Anna and walked to them (unsteadily) so he could get a picture. He fell a few times but got back up & kept going. It was worth all the work getting him here to see him improve so much

First pool therapy

Love to see that smile again! Jayden is doing so well! We are so thankful for all his therapy friends! 

Baby steps...literally!

He no longer needs oxycodone and his pain is well-controlled on gabapentin & amitriptyline. We are so happy! 

Jayden has shown a lot of improvement in one week! He can crawl up and down the stairs, stand for 30 seconds holding on to the coffee table or wall, and is improving a lot in therapy. 

A little pampering

Jayden got a nice hand & foot massage with his nail trim. We got a fresh haircut after that. He's able to sit for longer periods without pain which is nice to see.

Before...

It is hard to remember my sweet boy before "the badness" as he calls it, took over.  Two months before this started he was a smart, happy, sweet boy headed to his first day of Pre-K.  Now he can't do anything by himself.  He is frustrated, sad, mad, depressed, anxious, and confused.  Overall, he stays pretty positive and tells us he will be fine again soon.  He just doesn't like waiting, and neither do we.

First PT and OT visits

It has been a long week.  With daily doctor/therapy appointments, we are all tired and desperate for normalcy.  We headed to Gillette Children's in St. Paul on Dec. 3rd for his first OT visit.  He was so afraid.  He thought we would be sleeping over again like his admission to the hospital.  We arrived and he was in tears because he was anxious.  Still in pain, he had to ride in the red wagon to the appointment.

He loved it!  He smiled and asked if we could keep the wagon because it didn't make his legs hurt.  We had our hour long session and then headed to Target because he wanted to go so badly to get some ornaments for his tree.  Since he couldn't walk we had to get the double cart.  He and baby sister loved it.  It was a short run as Jayden did not tolerate sitting for a long time. 

Kids cookie in hand, we grabbed a few essentials and headed home.  PT was today, Dec. 4th.  It was almost 2 hours long and Jayden stood alone unassisted for about 5 seconds for the first time!  He walked with the aid of a special walker and despite my enthusiasm and applause, he decided I was a bit too much.  "Mom, please don't smile or be proud of me.  It's annoying."  The therapists had a good laugh and he walked back to the room in the walker without our help.

He is so tired now.  Asleep on the couch with his new knee mobilizers on.  We meet with the Physical Medicine and Rehab Doctor next week to decide if he needs 2 weeks of inpatient therapy instead of outpatient.  

December 1, 2014 Discharge Day

Jayden is medically stable but his spirit is low.  He still cannot walk and complains of intermittent numbness/tingling in his hands and pain in his legs.  We are hoping we saw the worst of this and are ready to head home to be with family.  We miss baby sister, our dog Bailey, and normal family routines.
PT and OT came early this AM to see Jayden one last time.  He sat up for the first time in 10 days unassisted!  He was up without help for about 1 minute.

We returned home today and Jayden said he just wanted to go to Chili's for lunch and then decorate the tree at home.  We went to Chili's and he sat next to dad in the booth to help him sit up.  He did not last long even with assist so we ate quickly while he laid on our lap and then we headed home.

We got home and dad grabbed a tree and strung the lights on it as promised.  As happy as I am to have him home, my heart still hurts.  He is so sad and depressed while he lays on the couch watching us.  He just wants to get up and help.  It is heartbreaking.

I Believe in People

The hardest part of this is feeling scared, alone, and helpless.  My husband and I felt so small in the waiting area of the Radiology Dept.  We were no longer in control.  The outpouring of support from family, friends, co-workers, neighbors, and others has been overwhelming.  They shower us with love, thoughts, prayers, gifts and most importantly hope.  Hope this will be better every day.

We are so grateful and don't know how to even begin thanking everyone and paying it forward some how.  The support helps us get through each day and holds us up at night when we cry.  Eight nights in a hospital with a child in pain is exhausting both mentally and physically.  The doctors and nurses have been so wonderful and Jayden is doing well thanks to their care.  We appreciate everyone so much!

People can do some pretty amazing things when they come together.

Here is Jayden holding a friend's hand as he gets his 4th IV put in.

After 5 days of IV IG

Here we are one day after day 5 of IV IG.  He seems to have more energy at times, is a little more playful and is able to straighten his legs much more than before treatment.  We are very hopeful that we are on the way up and out of the dark.  Hoping we have seen the worst of it.

He is wearing his PRAFO boots to prevent foot drop.  He likes his "medical Uggs".  They are fitting for the cold MN weather.  We should be going home tomorrow (Dec 1st, 2014).  Very excited to see baby sister.  We spent Thanksgiving here in the hospital which was so depressing.  We miss baby sister so much.  She is not allowed in the hospital so we brought her in on Turkey Day and brought Jayden down to see her in the lounge.

Big Brother got lots of kisses! She missed him so much!  We can't wait to go home as a family.

Guillain-Barre

My son has Guillain-Barre.  I'm heartbroken and scared.  Will he get better?  How long will it take?  Will he have permanent disabilities or pain the rest of his life?  I feel so helpless and angry.  Why my baby?  1 in 100,000 children get this?!?  We are the statistic!  It is a horrible feeling.

Throughout this journey I see the lack of resources and support because it is so rare.  We hope to give back some day when this is a distant memory.

He tried to play video games today which was reassuring. He's not quite himself yet but we see some progress.  We will do 5 days of IV IG and see how he responds.  We are very hopeful since he is so young and does not have any paralysis.  His lower and upper extremities are weak but he has motor and sensory function.  Motor function is diminished.

Admitted to Hospital

I carry Jayden into the ED again Sunday AM.  He no longer eats or drinks or walks.  My husband and I cry all day and night wondering what we can do to help him.  The nurse takes his vitals (which are all normal) and brings us back right away.  She also thinks something is wrong and tells me she wants a doctor to see him immediately.

He complained a lot of pain in the long bones all week.  I am fearful he could have leukemia but baffled by his normal lab results at every visit.  He still has no reflexes so the doctor orders x-rays of his L-spine, pelvis, femurs, tib/fibs and feet.  They are all normal.  I feel sick to my stomach with worry.  He decides to admit Jayden overnight for a "work-up".

I am told Heme/Onc is consulted and that they will get more labs drawn in the evening.  I ask for a neuro consult as he is not able to walk and has no reflexes.  They say they will discuss it with them after getting an MRI.
We get an MRI the next day at 2:30pm.  I am livid as he is now complaining of upper extremity weakness and tingling.  He described this to me as "my hands are tired and dry mom".  We talked about when you sit on your feet and they fall asleep and what numbness and tingling feel like.  He decides that is what he is trying to describe by saying "dry".
The MRI shows demyelination of his nerve roots in the cervical and lumbar/sacral area.  This is consistent with Guillain-Barre Syndrome.  We wait for the LP to come back which confirms the diagnosis with elevated protein levels.

Emergency Room Visit

I am frustrated, tired, helpless and distraught.  We arrive in the ER and brought back immediately as they fear he has meningitis.  He is examined and they run an influenza test and CBS which all come back normal.  Despite not having reflexes in lower extremities and diminished upper extremity reflexes, we are sent home and told he has "a virus".
As a nurse, I never bring my children in.  He had never had a sick visit in his life, let alone an ER visit.  I am frustrated and sad because I feel so helpless and know something is wrong.  We go back home and I carry him to bed with tears in my eyes.  He doesn't even look like my son anymore.  He is listless and in pain.

Initial Symptoms

November 14, 2014
After leaving a dinner party at a friend's house, our 5 year-old son, Jayden, complained to us that his legs hurt.  We didn't think anything of it as he was running around and jumping off chairs with the rest of the kids that night.  He went home and slept through the night.
November 15, 2014
Jayden woke up complaining of extreme leg pain.  He walked like his muscles were sore as if he ran too much or lifted too many weights at the gym.  We told him to walk around and loosen them up and he would feel better.  He took some Tylenol and then went to the waterpark with Daddy.  Although he was a little slower than usual, he walked and went down all the slides without difficulty.  He even went to a movie that night and did not have any problems.
November 16, 2014
When Jayden woke up, he could hardly get out of bed.  He was crying and limping when we finally assisted him to get up and get dressed.  Lifting him caused him pain.  Touching the backs of his knees and arm pits caused him pain.  He seemed to get better throughout the day and limped around the house.  He didn't play like he normally did, appetite was decreased and he said he was tired a lot.
November 17, 2014
Jayden woke up every hour during the night and could barely walk.  Thinking he was sore from playing so much over the weekend, we got him ready and off to pre-school. The stiffness and pain seemed intermittent as he could still walk and sit comfortably in a chair.  The teachers emailed us that Jayden wasn't himself and was complaining that his stomach hurt.  We picked him up early and brought him home.  He slept a lot, didn't eat much and did not want to do anything.
November 18, 2014
He went to school again and seemed a little better than the previous day.  At home, he slept the entire night and refused meals.  He did not want to eat his favorite foods or anything.
November 19, 2014
Jayden got progressively weaker and moaned/cried in pain all day and night.  Tylenol and Ibuprofen were not helping so we decided to bring him to the doctor the following day.
November 20, 2014
Jayden sees his pediatrician.  Labs (CBC) come back normal and although ataxic, Jayden can painfully "walk" 5-6 steps unassisted.  His balance is off and he starts having pain when sitting or lying on his back.  He is diagnosed with "growing pains" and we are sent home to manage on our own.  As a nurse myself, I ask why he has no reflexes and I am told he is in too much pain so they can't appreciate them.  I am the "paranoid nurse mom" and Jayden is a "bit dramatic" about his growing pains.
November 21, 2014
While working day shift, I get calls from my husband who is at home dressing, feeding and carrying our 5 year-old like he does our 1 year-old.  We know something is wrong.  I tell him I will bring him to the ER when I get home.