How many of you have had terrible hospital/doctor visits?
How many of you dread going because you are sure that they won’t believe you?
Help you?
Or even Be Kind to you?
Every time I take my children I worry about ALL of the above and then some, including someone with good intentions calling Family Services.
I mean, seriously, how many people can cause bruising and dislocations or fractures by sitting in their wheelchair, taking a breath, painting their nails or other mundane tasks?
Not too many I would guess.
Recently I had the opportunity to seriously test our local emergency rooms with one of our “odd stories” and subsequent bruises and injuries. The visit went so well I wanted to share it to offer hope and commend the hospital, doctor and staff for their support and kindness.
THE “ACCIDENT”
(Yes, the following is possible and true for those who have never heard of our syndrome.)
Late Friday night, my eldest daughter was in too much pain to attend her graduation so we opted to watch a baby and toddler for a few hours so other parents could enjoy it instead. We romped, played with Legos, giggled, laughed and had fun like a “normal” family. My youngest daughter even carried the baby around with no dislocations or pain.
Fast-forward a few hours after the little ones leave…we are sitting the frontroom watching a movie, me on one sofa and my daughters on the other when we hear an ominous “POP”!
Any EDS parent knows that a loud “POP” is NEVER a good thing.
I look over and my youngest has a look of sheer torture on her face and is stuttering, “Uh, Mom I think I dislocated something or other”.
This is not unusual so my response was simple, “Um, Ok…Want me to look at it?”
I did and her clavicle was out, her shoulder was out and her rib was not right.
Welcome to EDS.
We decided that given her history of her joints resetting on their own we would wait it out and she could try medication, time and rest.
By 8:00am the following day she had bruising around her clavicle that looked like someone had tried to choke her and it was growing in size, her shoulder and ribs hurt even more so we made the decision to give it just a few more hours (I needed to stay with my oldest until I found someone) and we would go to the ER.
Besides another loud “POP” at midday the pain didn’t change (we believed it may have slipped back).
For most people choosing an ER is simple…GO TO THE CLOSEST ONE.
(No brainer, right?)
WRONG!
We have an ER three blocks away and short of being at death’s door we will not go there.
We have another ER 20 minutes away and 2 out of 5 doctors DO understand my daughter’s syndrome well enough to slow down and look at the big picture. The others? Not so much.
Then we have the teaching hospital full of residents and that are in touch with her pediatric orthopaedic surgeon when needed, but it is an hour away.
What makes our decision?
Usually the extent of the damage and how well she can travel.
On this particular day we chose to go to the teaching hospital (St. John’s in Springfield).
I am so glad we did.
Remember, as it is, my 14 year old already has a bruised/dislocated/subluxed clavicle, shoulder and rib. So, what happens as we are exiting our front door?
Her ankle rolls and she stumbles in to the porch wall!
Are you kidding me? I said “That’s it! You are using the wheelchair for the rest of the night.” And she did since it seemed safer.
THE HOSPITAL
St. John’s is a large hospital and sees hundreds of patients everyday in the ER. It is not uncommon for there to be twenty patients seated in the waiting area after being assessed (many are colds and flu). We always expect to sign in and wait when we arrive since we are not (and should not) be considered top priority. But on this particular day there was NO waiting.
Now, as with most EDSer’s my daughter has a list of side “syndromes” or “EDS friends” as I call them and they are just as rare if not more so than EDS. Ironically they also have initials we have learned to use to make it easier to say. Very often hospital staff will not only have never heard of these syndromes but ignore them entirely. This was not the case at all!
The intake person asked all the right questions, didn’t look at me judgmentally when I said “She injured herself taking a breath” or “She is suspected of having P.O.T.S. and M.C.A.D.” and I didn’t have to spell ANY of them!!! (This is a little happy dance all by itself.)
The triage nurses were also extremely helpful. They took her blood pressure, weight, temp, etc… while being VERY gentle and patient. (The POTS makes her lightheaded and dizzy at times.) They asked additional questions about her illnesses and medicine allergies as well as her EDS. They then took us to an ER bed immediately and followed up with a few more questions (LISTENING carefully the whole time). When my daughter began shivering slightly I offered her one of the three hoodies I had on hand and asked her if she needed a heated blanket. The nurse seemed a little surprised considering she had on a hoodie and tank top already. I simply explained that the POTS and poor circulation causes her to get frostbite even indoors and we showed her the damage to my daughters fingertips.
In less than 3 minutes we were visited by a nurse from pediatrics and being transferred to a MUCH warmer room. (My daughter was cozy but her poor momma was sweating to death.) I am not sure if they turned the heat up or simply have a warmer room for patients with a low body temp but for my baby it was like a little cocoon and her body could relax and not shake or tense up from being cold.
The next visit was from the floor nurse and she was wonderful.
She walked right in and said (not a direct quote but VERY close). “They said you have a rare syndrome and I should write it down. Would you spell it for me so I can get right on it?” What can I say? I did and I even explained a bit about how it affects us specifically. She also checked on the temperature and my daughter’s comfort.
Within just a few more minutes the doc came in and THANK GOOODNESS he not only knew what EDS was, he knew to ask about co-morbids and additional issues. He asked what MCAD symptoms we had and the triggers as well as medication reactions.
He didn’t look at me as though I had completely lost my mind when I explained that taking a breath created this disaster. He didn’t try to hyperextend my daughter. Or stretch her skin. Or argue about her diagnosis.
He simply and GENTLY examined her thoroughly, all the while asking about any additional issues. He seemed to decide I had a square head on my shoulders when, to his last question, as he checked her eyes “Any other issues?” I responded with “Well, collagen is in all our soft tissue and is affected so sure she has eye problems and the usual soft tissue issues.”
He asked if we would like some pain medication due to the fact it was obvious her pain level was high and some relief would be good. I know it helps that our records show a history of non-narcotic choices. (We hate meds and avoid them when at all possible.) He even discussed pill or shot AND which type was the most useful for us. (This is one thing many drs still don’t get. For whatever reason EDSer’s bodies respond to pain medications differently and what may work for one doesn’t even begin to help another.)
We chose the shot after which I recalled her last Mast Cell reaction while IN a different ER to Fentanyl and had to rush out to the hall to ask the nurse for sure which he had chosen. He hadn’t mentioned Fentanyl but I am always cautious about substitiutions or changes.
She then added Fentanyl and the reaction to the NO-NO list so that we wouldn’t forget again and informed me it was going to be Toradol. She even stepped back in to make certain the shot is what we had chosen because she understood our skin was sensitive to trauma. I knew it worked the fastest so I encouraged my daughter to take it.
Between ordering the shot and actually receiving it x-ray showed up to take her away and JUST as I was suggesting we might want to have the shot first the wonderful nurse came over and told the x-ray tech the same thing. The x-ray tech was so gracious and didn’t return until the shot had a chance to help with the pain (not that the xrays didn’t hurt anyway).
Of course, her leg and body began to tremble from the shot so she had to sit down and have help walking but that is her bodies normal reaction to ANY pain medication.
Side note: If you want your teen to hate you for a few days just order a shot in the hip (if they have never had one before). As many times as we have been in the ER my daughter has NEVER received a pain shot. She has had pain meds thru I.V.s and Tylenol/motrin/codeine via pill form but apparently NEVER a shot. It hurt and she was NOT happy. Because we try not to visit the ER unless her injury is substantial or she is green, struggling to breath and might be having a heart problem we try to fix things ourselves with resets and braces.
The x-ray attendant was very gentle and patient as my daughter stumbled her way around and tried to hold her positions without trembling. The attendant didn’t tug, pull, or grab (which I am sad to say happens a lot and causes more harm than good).
After a short time the doctor returned and discussed the x-ray results, follow up treatment and care. He also stopped at the door and turned around when she mentioned her neck had begun to hurt. He immediately reentered the room and took the time to examine it and reach the same conclusion I had, the muscles were tight from working to keep her shoulder and clavicle aligned.
Upon discharge we wanted to thank him and discovered that he had signed out for the evening. I got the impression he should have been off quite awhile before he left us for the evening but NOT ONCE did he make us feel rushed, crazy or unimportant.
I just wanted to share a positive hospital experience because I know too often all we hear are horror stories of rushed doctors, rude nurses, disbelieving staff and no one listening and honestly I always go in prepared to do battle or have a long wait.
I can only imagine the sight we presented with her wheelchair, an overloaded backpack (we take chips for salt, Gatorade for electolytes and water as well as current meds, drinks, and books or tablets), 3 hoodies, a cuddly and sometimes a blanky while bundled up like we were in the arctic but not once did the staff make a judgement call or show disrespect.
Do you have a positive experience to share? Please do so in the comments or with an email to thezippyzebra@outlook.com
Feel free to follow us on Pinterest, Facebook or Signup for Email notifications.
My Family's Personal Stories, Real Life Stories, Uncategorized | TinaMiller | 
July 10, 2016 4:53 pm | 
Comments (0) 
Subscribe
