The Scariest Night Of Our Lives

Today’s post is coming from a worried momma. A momma who is looking for ideas and answers. Below you will find another personal story. I know this is the second in a row but it’s one that is weighing heavily on my heart. It was the scariest night of my ENTIRE life.

Background:

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EVENT

On this particular day (June 14th) she woke up congested and feeling yucky but that is rather normal so I didn’t give it much thought. I made certain she took her maintenance medicines for allergies, daily pain, etc… She ate a good lunch and was hydrated before we left.

We attended the party, ate a meal and watched my adorable niece open her gifts. Afterwards the rain hadn’t started so my daughter climbed into the family pool. The pool was full of young children and babies so there was NO real swimming or heavy activity by anyone including my daughter.

I made sure she had salt and water before getting in the pool to help control her POTS reactions since I know that heat and activity are both big triggers.

She was in the pool approximately 30 minutes and didn’t look any worse for the wear, not any worse than she usually does after being in a pool but within another hour she was complaining of weakness and pain in her neck. She even waited to change her suit because she felt so “off”.

After noticing that she was looking a little worse than usual I decided to help her change out of her swimsuit. After struggling to remove it she mentioned that her legs were like jello (once again not unusual with POTS) but she was completely unable to stand on her legs and they were turning bluish/purple (once again not uncommon due to another of her diagnsoises, Reynauds). I helped her slip on her jeans and suggested she rest on the toilet seat for a few minutes while I tended to her wet clothes. When I returned, less than five minutes later, she said “I felt something move in my neck/back and now it feels funny. Like shaky or something.” And the next thing I know she slid to the floor like a wet noodle. She didn’t lose consciousness, she just turned into a bowl of spaghetti and slid off the seat.

Her stepfather and I walked her to the kitchen but I had to hold her head and chest to keep them from flopping around. She had absolutely no control of it.

In the kitchen I noticed her face was whiter than it has EVER been but her body, limbs, etc… were all purple. She could not support her head or lift her limbs or seem to talk coherently and about this time I decided it was not just a POTS episode but we might need to take her to the hospital.

Her brother carried her to our van because she had absolutely no muscle control including her head and throat. She lost consciousness when he placed her in the van and began struggling for breath, swallowing and couldn’t form words when she did regain consciousness. She still had no head control even with it resting against the seat.

I sat behind her and held her upright in the seat by wrapping my arms around her torso and using my shoulders to support her head.

She lost consciousness 2x more before we reached the ER and added shaking of the chin or entire body to the list of symptoms. (I assumed she was cold since she struggles to control her body temp.)

Thankfully we were able to return to the hospital that was so helpful a few weeks ago when her shoulder, clavicle and rib had subluxed. (Read about that great ER visit here.)

Since she was still unable to keep her torso and head stable I actually stood behind the wheelchair on my knees holding on to her head and torso until the staff noticed that she was in distress and immediately tended to us.

By the time we reached the hospital she was delusional, unable to form words or thoughts, couldn’t focus her her eyes, control her head or any muscles, shaking (the hospital asked how often she had seizures but the shaking wasn’t seizures), plus her neck and head hurt. She was taking deep breaths and REALLY struggling to swallow and get air.

As they were prepping a room they put her in a bed in the hall (to help provide stability) and asked what we needed, what happened and what symptoms she had since we went from “give us your name” at the entry window to a bed in less than three minutes. I immediately asked for heated blankets and suggested an IV but from there I was stumped. THIS had never happened before.

We were immediately transferred to a room and I swear there we at least 3-5 caregivers in her room at a time until she was more lucid and stable.

They were all very thorough, very thoughtful and very patient. They took into account her complexities and possible complications. They were gentle with her skin and while changing her clothes when I pointed out the problems with EDS and would double check before doing most things. They even set her up with a therma angel (see below). It heats the IV before it enters your body. This is the first time an IV did not cause her to shake uncontrollably while first being administered.

The only thing given was a saline flush and IV. NO meds but she did improve.

Her oxygen was 100%. BP, temp and pulse normal (for her). Blood, urine,EKG and x-rays were beautiful. The only thing I noticed and she pointed out was the fact her breathing was more difficult when she turned her head to either side. While her oxygen stayed at 99%-100% but her respiratory rate dropped from 20/24 to 12/16. (It didn’t cross my mind to mention it while we were there. I was more concerned with getting my baby girl back.)

In the end she improved and we went home with absolutely no answers. The Dr. stated that with the complexity of her body we needed to continue to search for answers but they were unable to provide any at that time. She even shared what some of the tests were and what they looked for in case I had other ideas. But I was still in shock from just how sick she had been and couldn’t work my brain properly.

We have been home about two days now and she is still weak and having difficulty concentrating, she still struggles to breathe and swallow if she turns her head even slightly to one side. She struggles while swallowing bread and other thick items. She has no energy. Her head and neck hurt non-stop and she cannot lay flat at all without struggling to breathe or swallow. She mixes up her words, struggles with coordination more than ever and has numbness and tingling in her extremities anytime they are below her head (especially her left foot and leg). I help her walk most of time because she is unsteady on her feet.

It is almost as though she had a stroke but didn’t get the symptoms quite right. I feel that blood flow was cut to her brain and caused the symptoms she experienced I am just not sure why.

I have been and am still doing research to help our doctor find a possible cause and follow up tests and treatments. I am sharing this post in hopes that someone will have suggestions, ideas or similar experiences.

Updates on my daughters journey can be found in our “Personal Stories” Section found here.

Tags: Angel Warmer, EDS, Help, I.V., Loss of consciousness, Loss of Head Control, P.O.T.S., POTS, Slurred Words, Stroke Features, Tremors

My Family's Personal Stories, Real Life Stories | TinaMiller | June 17, 2015 12:41 am

16 Comments

By Becky Mooney, June 17, 2015 @ 6:45 am

I had something similar happen 5 years ago. I am now 37, and have only had my illnesses confirmed during the past year. We never got answers from that night, but we suspect conditions were “right” for an event. I have EDS III, POTS, MCAD, Dysautonomia, IgE food and other allergies, loads of food sensitivities, and that night, I had tremendous stress. It was a three month recovery, though I had control of my body during recovery. I could walk and talk and such, however, I tripped over my own feet had very bad limb tremors and forgot many basic words, and memories. I will pray for your daughter, I truly will. God, Our Creator, can handle anything. Possibly something in her neck is subluxed or dislocated?
By TinaMiller, June 17, 2015 @ 8:01 pm

Update: We visited our family practitioner today and I presented the details on CCI (Cranial Cervical Instability). He agreed that it sounded very likely and made the referral for the neurosurgeon in Urbana. Our office made the call and faxed the records before we even made it home. Nos we are waiting to get a call from the neurosurgeon’s office for follow-up and will be taking her to the ER if her current symptoms worsen or the really bad ones return. Right now it is a headache, neck pain, blurry vision, fine motor skills and verbal struggles as well as walking a straight line.
By Jennifer Rodgers, June 18, 2015 @ 10:40 am

Tina, Thank you for your post. I’m so sorry to hear you guys had to go through such a scary event. I feel like you are a window to my kiddos future and always appreciate it when you share events and am always hopeful you will eventually find answers and solutions. Hang in there momma!
By TinaMiller, June 23, 2015 @ 9:20 pm

Thank you for the encouragement. Just remember we are all different and your littles will hopefully skip some of these more scary moments but I know what you mean.
By Wendi willoughby, July 31, 2015 @ 6:14 am

It sounds like a high cervical fracture or compromise as a problem in that area can cause breathing and and heart rate problems and cervical instability.