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Shea’s Story

What we thought were simply childhood dislocations, growth spurts, and hormonal migraines turned out to be so much more.

Disability, inability to drive, unable to stay home alone for any length of time, use of a wheelchair at times, the need for a service dog, and now the possibility of a brain surgery or 2.

A little less than 3 years ago, our world began to take a roller coaster ride, with Shea in the front seat. Little did we know that what we thought were occassional dislocations years ago would turn out to be a rare connective tissue disorder that affects 1 in 5,000 people. It's called Ehlers Danlos Syndrome. (EDS)

After a constant decline in Shea's health as well as the lack of local physician's knowledge of EDS we called Dr. Clare Francomano in Baltimore, Maryland. She is a geneticist and an expert in EDS. She has done years of research on EDS.

This 3 hour appointment was very informative and educational for both Shea and I. First of all she said that Shea had Classical EDS not just hypermobile as we had first been told.

Then she went on to explain that she believes ALL Shea's health issues;(seizures, blurry vision, numbness and wealness in hands, legs and feet, severe back of the head pain, neck and back pan, gagging reflex. her body's inability to control it's temperature, lack of grip strength in her hands, migraines, loss of memory, inability to think clearly plus all her stomach issues) can be contributed to the fact that she has Cranial Cervical Instability (CCI), along with the possibility of her having something called Chiari.

The CCI was verified as she gets some mild relief once her head is lifted up off her spine. It is made worse by pushing down on top of her head.

The doctor's plan: for us to get Shea to The Chiari Institute(TCI) in Great Neck, NY for further eval. To get an Aspen collar for her to wear as well as a Pronex traction unit for her to use. The traction and Aspen collar do help with her back and neck pain and gives her some relief from the pain in the back of her head. These are other 'sure' signs of CCI.

I have CCI, EDS, Chiari, None-Epileptic Sezures, Arthritis, POTS, Congenital spinal Fusion, Degenerative disks, Osteoporosis, IBS, Asthma, TMD, and Gastroparsis.

I have had 21 surgerys in all (1989-2008)

You may 'wish' there was something you can do. There is, you can pray for Shea and our family as well as the doctors that will be seeing her and working with her.

We covet your prayers, Thank you, Shea

Latest Journal Update

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PrayerWarriors,

Your prayers were answered!  Shea’s procedure was long and involved, but the Dr. was able to finally get her medic-port changed out, the one in her right upper chest.  Dr Anderson was determined NOT to place the lumbar port unless it was the very last resort. After several attempts, it was determined that there was NOT a clot forming on the end of her medic-port but due to the catheters length it was ‘sucking up to the artery wall’ each time aspirations were attempted.  When meds were flushed (pushed through) they went without problem, however once suction was made, it sucked up to the wall and would stop the actual drawing up of blood. After this was discovered, they had to go in through her groin and cut the end of the catheter off, making it shorter. After this it aspirated without issue.

Dr Anderson felt the need to go ahead and completely replace the whole mechanic of the port. In order to do this, he had to surgically remove the one, close that spot up and put in another port, which is right below the one she used to have.  Everything works great.

After going to PACU for recovery, they brought her back to the room and did a final BP on her and removed the IV.  Shea said she had felt a warmth on her right leg (groin area) but said the nurse in the PACU looked and said it was all fine.  Well,this is Shea, so YOU KNOW there HAS TO be a glitch right?  Sure enough, when I pulled back her gown to help her get dressed, the gauze and the whole 4X4 of Tegaderm was sitting in blood as well as everything under her. She was a mess. There was no way the PACU nurse didn’t see all this blood! (Of course it was about 4:30PM and she was probably  wanting to go home,) It was so much and in a spot that it greatly concerned me, enough that I ran down to the nurses’ station and told them they needed to come back ASAP and quickly explained why.  

Two nurses came running down the hall and it took all 3 of. One nurse held pressure on the groin area and the other nurse and myself cleaned up all the blood.  The wound was just a small ¼ inch incision.They didn’t close it in anyway except with gauze and tegaderm.  Even knowing how poor wound healing Shea has,not even a stitch was taken.  So, due to the amount of blood she’d lost, we had to stay an extra hour, her BP was closely monitored and she had to lay in an upright position with pressure on the area.

Now fast forward to Friday. I’m out running errands, and our oldest daughter calls meand says, ‘Mom you need to come home, Shea’s  fallen and won’t get up’. So I went home, by then Shea had gotten up, Lene’ had her in the house with her wrist propped up on pillows and ice on it. She had fallen,  and in order to avoid hitting her knees on the concrete floor in the garage, she fell on her left wrist, it’s bruised up, and was hurting pretty bad, so I took her to a Dr, x-rays did not show it to be broken, just severely bruised.

Praise the Lord for this, yet another blessing!

 

Now, today she went to a scheduled appointment with her Dermatologist, for a PatchTest.  This one appointment has turned into2 additional appointment as we have to return Wed and Fri for ‘results’. This patch test is not like your typical allergy testing.  (See the link I've included for more info on it) : http://en.wikipedia.org/wiki/Patch_test

But, due to the fact that Shea can’t have the ‘traditional’ adhesives that are on the regular patches, the nurse had to make all 80 of her patches special. Just for her. Now she has 80 little patches on her back covered in Tegaderm. These will stay on until Wednesday, they will be removed and the results ‘read’ by the Dr. Then we will go back on Friday and her back will be ‘read’ again.

From this he hopes to be able to better determine what causes Shea’s multiple rashes over her body.

Please in be prayer with us that the Dr will find the answers in this test and will be able to come up with a medication that will help Shea, especially when she is in a ‘flare up’.

 

You all mean the world to us and we can’t ‘thank you’ enough for your prayers.

Have a great week!

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Comments

2 Comments

Pamela Edwards
By Pamela Edwards
What an emotional roller coaster when we see only through physical reality. But when we keep our eyes on Jesus and see through spiritual realities we have peace and with thanksgiving we shout "thank you Lord". Shea love you and you always are in my prayers.
Maureen Didion
By Maureen Didion
You are both amazing - so strong & determined.
You are an inspiration when I face my daily challenges
God Bless & keep you
love, hugs, daily prayers "mo"