Scariest Night Update 2 (Hospital Stay # 1)

To read what constitutes the scariest night of our lives and why we are sharing updates click here.

To read why we are heading to the ER again click here.

Please note that this was written (June 18th and it is now July 30th.  I will be sharing updates daily until I am caught up to where we are in our journey now).

Being the control freak momma I am, I didn’t just load my daughter into the van and run her to the ER.  Instead, I packed a cooler, a hospital bag and made arrangements for my pets and other children THEN we left for the hospital.

I asked my hubby to drive so that I could support my daughter’s head on the two hour car ride.   If she wasn’t resting her head on my hands behind her head she was leaning forward on her huge stuffed penguin to relieve the pressure on her neck.

Let me just say we have never, ever been to Carle hospital, we have visited in one of their clinics but never to the hospital itself.

We were checked in almost immediately but then had a fairly long wait in the emergency waiting room.  After all it was after 8:00pm on a Friday night.  I was thankful we had brought her Gatorade to help keep her fluids up while we waited.

Hanging in the waiting room at Carle

Once we were in an exam room the doctor came in immediately and discussed our options for assessment and treatment, including an MRI and MRI with contrast as well as an overnight stay.   All things which I felt would be beneficial and agreed to have done.

I did mention that she would likely have a reaction to the contrast and they should probably have some Benadryl on hand.  Next thing I know the nurse returns with an IV bag, Benadryl and Toradol for the pain.   I told the nurse that she might have an adverse reaction the IV (tremors and shakes are normal with an IV for her).

And have a reaction She DID!

  They put the IV bag wide open and administered the Benadryl and Toradol headon.   All a recipe for disaster.  

She began shaking more than ever before, coughing like she was choking and gasping for air.  I will give the nurse credit as he responded immediately and stayed with her until the major part of it passed but this momma was not happy and my poor baby was terrified.   She HATES the shaking that comes from an IV and this times was worse than ever but she did make it through.

   Repeatedly I reminded them of her struggle to breathe when lying flat every since “the incident”.   The solution was to offer Ativan (in case she had nerves) which I refused due to the fact I did not know how she would react to yet another medicine (8 mast cell reactions to meds in the last year) and she has had 5 MRIs in the past with no “nervous issues”.

CARLE ER Exam Room


After the medication had time to take effect and she had stopped trembling radiology came to pick her up for an MRI of the head and neck as well as a contrast MRI.   She asked me to walk with her (she was in a bed) to radiology and help her on the table which I did and I reminded them REPEATEDLY that she struggled to breathe when laying flat EVER since the episode on the 14th.   They were sure she would be ok and took her in.   We were told it would be at least an hour and a half before she was finished and we could go grab some food, make calls, etc…

We chose to go to the cafeteria because Momma Bear wasn’t comfortable with leaving the hospital (call it intuition).

I am so glad we didn’t!  

As we headed back to the ER room we noticed the MRI tech in the hallway coming from the direction of her room.  It had only been 30-45 minutes, not a good sign.   Apparently, she began struggling to breathe part way through, they took a break and tried again and GUESS WHAT?   She struggled some more.   Yes, she had to lay flat.

The decision was made to simply admit her and have an anesthesiologist put her to sleep and monitor her during the MRI the next day.

So, just after midnight they admitted her to a room and our long weekend began.

We spent a mostly uneventful night tucked up in a hospital bed with her head once again on my arm since she seems to breathe so much better there.

(Side note:  IF you have trouble fitting in a bed with your child because she wants to be as close as possible simply flip up the guard rail and use it to support your back and bum. Three nights in a row that rail was the only thing keeping me off the floor.)

The next morning the floor doctor let us know that they would not be performing an MRI soon as it needed to be scheduled with an anesthesiologist and MRI and there didn’t seem to be an opening since it was the weekend.   She also mentioned a Dr. K would be coming in to discuss our case.

So we did what any family would do….We waited.

Hospital Room at Carle

Then came DR. K.

Let’s just say Dr. K. did not strike a happy note in me at the beginning of our meeting.

She began by questioning how we were diagnosed with EDS (stating we had no genetic screening in our file) and made the remark along the lines  “I understand you are here more out of your concern than presenting symptoms”.

Anyone who knows me knows that I am not patient with attitude for long BUT I am used to others doubting my daughter’s diagnosis because they are unusual and uncommon.

I began by explaining that we are testing for EDS Vascular Type but the original thought was Hypermobility EDS which has NO proven genetic tests but she tested high on both the Beighton and Brighton Scale and any Dr who handled her case agreed EDS was accurate.

I also explained that after a visit with the local physician and watching my daughter struggle for a week we were here because she did present with multiple symptoms and I was NOT going to have her suffer permanent damage because I did not pursue the cause.

After discussion and examination she seem to change her opinion and was VERY thorough in her questioning and physical examination.   We discussed my daughter’s POTS symptoms, her EDS, her Mast Cell, the Series of Events that occurred the day of the incident and the days following.

She had ordered a CT scan to get a quick look at my daughters brain and neck and they came during our discussion after which she ran my daughter through some basic response tests and discussed further options.

She then had flexion xrays done to further investigate the idea of CCI.

A brief conversation with Dr. K. outside the room let me know that the CT and previous night’s MRI showed “everything in the normal range for a normal patient”  BUT “due to the fact the patient has EDS the neuro/radiologist took a closer look and noticed some variation in the C1 and C2 and would be looking into it further.”   Um, Ok.

Upon her leaving we knew that they were going to keep us another night and hoped to schedule an MRI the following morning.

For more updates you can search the blog under scariest night as I will continue to post throughout our “adventure”.


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