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
WOW! This has been one of the most horrible stays at any hospital we have ever had! It has taken until yesterday to get someone to finally listen to us about Shea's pain med regime at home versus here. They started her at a base level and not HER level. We kept telling the Dr and nurses that she is on higher doses of narcotics at home 'scheduled' not just PRN. Shea has been in severe pain, and muscle spasms since surgery until late yesterday. When 2 of the doctors nurses, and the hosptial's pain specialist came in, spent @ 25 min talking with us, asking Shea questions, before the PS admitted they are under-dosing her and needed to increase the narcotics to where she is at home. That was a huge undertaking in it's self to get this done. I thank the Lord that somebody finally listened to us.
Then after we thought we were past all the trouble, we get a young new nurse' that knew it all'. She came in to give Shea a scheduled bolus of pain meds and very curtly told me, "I'm not giving it to her she's too drowsy'. I said,' excuse me'. So she repeated herself. I explained that there is a big difference between being medication drowsy and sleeping from two days of no sleep due to pain, then getting some ease and having had PT 2 times already since all that. The nurse then goes on to raise her voice at me to the point of yelling at say: "My license is on the line and I am uncomfortable giving her, her meds, .....if you don't care about your daughter's health I do!" Yes, she did yell this at me! Of course by then Shea was awake and told the nurse to leave. I left and went straight to the nurses station and asked the floor nurse to come back to the room with me NOW.
I don't know about you, but as a good friend told me, "them's fighting words', when you tell a mom she's ..if you don't care about your child.....
Well needless to say, I have since spoken with; the House Supervisor, the D.O.N. & the Patient Advocate person.
Please understand that this was not the first incident that we have had since we have been here. It has been something from the first moment we got on the floor, regarding her tube feedings, her CPAP machine, the crushing of her meds fine enough to go through her J-tube, her pain meds being PRN and low doses and so on, it was the fact that this nurse yelled at me and totally disregarded Shea asking her to leave, that was the final straw.
However, we do have a praise, she got a descent nights rest last night after getting her pain meds on board, and then today has been a great day, she's had a very nice & caring nurse, and we've had no 'bumps in the road' today. For this we are truly thankful.
But, we do have a prayer request, the Dr. has scheduled an MRI to check to see if there is a reason other than the fact that nerves were involved in the surgery, for her to be having such painful & frequent spasms. We are heading down now for the MRI.
The Dr said he would look at it tonight and determine if a change in meds needed to be done, or if it was simply a fact of the nerves being worked over and needing to heal.
I will let you all know what he says regarding the MRI sometime tomorrow,