Mama Fran: daily update

Good Morning !!! Thank you Lord for waking up today!!
There is a special group of folks that are sometimes left in the shadows . The brothers and sisters of persons with SCA.
I remember when my oldest son Kevin was a little boy and the hospital we used at the time had a group for all the brothers and sisters of kids with cancer . He asked why there was not a group for him and his brother was really sick too.
Remember you are as important as your sibling try not to be frustrated if plans are cancelled for a crises or money is tight because your parents missed work due to your family members illness.
Once when my oldest was really little he asked if we would love him better when he got Sickle Cell
The whole family is affected when one member is down. Hang in their as a team.
That same little boy now all grown up realizes the tough journey his brother has he now takes care of his own family by working in a war zone daily in Afghanistan. His struggle as a child watching a sick brother and wondering sometime if he would die made him stronger.
There were time when he would try and make his brother "normal" like take to a party in the middle of winter his coat gets stolen and his brother was as cold as ice!
They look back on stuff like that and now know how dumb that was. But they also remember when my oldest found little tiny football pads to cover his brothers chest after his first Port a Cath at 3 yrs old . He wanted his brother to play outside .
The oldest remembers more bad stuff the youngest remembers how much fun they had at the children's hospital play room. We used a different hospital that included brothers and sisters all the time.
The youngest completed her graduate work researching the Social disparities of SCA and now is seeking a research position in the field of SCA.
She just rearranged her life to get planes home to help with this last critical episode.
Their work ethic is strong due to keeping the family going despite struggle.
They would walks the hospital floors with me finish their homework and go to school the next day.
There experiences while different has one similarity
What doesn't kill you makes you stronger .
Struggle can build character and give you drive to keep going.
Brothers and sisters you are very special
Be sure to talk about how you feel when your family member is sick .
Remind your family that watching the pain and suffering can be scary , sad and make you feel
Worried.
Ask how you can help. Ask for explanation learn about SCA and when the time comes you will be an advocate for your family member or dear friends. You may need to tell their story by sharing your own.
My grandson said " Grandma what's wrong with Uncle
Marqus "? When he was in the ICU. I explained that the sickle cells were blocking his blood vessels giving him pain. My grandson in a very strong matter of fact why says " Then they just need to get rid of those Sickle Cells"
Seeing things thru the eyes of babes is matter of fact , to the point.
The time is now !! And I believe we will be getting rid of these Sickle Cells!! Tell your stories
We love you brothers ,sisters , families , friends
Together you are the glue that keeps the person with SCA going !!!
Chronic illness can be lonely and the hospital staff can be your second family . It's ok to need help sometimes. Marqus always remembers to say thank you.
Dear Kevin and Ashley ,
Your dad and I love you and say thank you.

Share Your Story!

You are strong!! I can't explain why sometimes it seems that God doesn't know our pain. Please know
You are strong and keep sharing your story. If there is something you like to do you can. Drink lots of water no soda eat as many fruits and vegetables as you can.
Take your medicine. Always remind folks to wash their hands and not spread their germs. It's ok to rest when everyone else is running around use that time to play your favourite game. Be sure to tell your mom if you feel sick or if anyone gives you a hard time when you ask for help. You are a warrior a hero!!!
Sending you our strength and a big hug from Marqus' mom. Mama Fran!!!

Strength in numbers. Tell your story our time is now!!!

How to heal pressure ulcers:

http://www.enluxtrawoundcare.com/pressure-ulcers.html

Photos: Service dog Chewy. First time at work!!!

Momma Fran: daily update 9/26/2015

Well the verdict is in.
The wound infection will result in him losing his port a Cath. They will be doing a MRI to look for Osteomyelitis. (Bone infection). Any infection can travel into the blood it will then seed itself on any implantable device like the port.
Our skin is our first line of protection against infection!
Break down that fence and the germs march on in !

Glad our health care team is on top of this and that
We don't have to wait for a "technical" 101 fever to check those blood cultures!!!
Also the puppies nose knows!
Ok let the healing begin.

Momma Fran: daily update 9/26/2015

Good Morning everyone!!
Marqus has been re admitted to the hospital.
His wounds are the biggest reason for these repeated episodes. This time the good news is getting blood cultures early for his temp 99 to 100 made the difference!!

He had chills after the wound debridement.
Also hindsight is 20/20 when his blood count drops and doesn't recover we have trouble.
What is amazing is how his service dog in training
Stays right with him Chewy will sniff him head to toe
If something is different.
This is the 3rd time he has done this and then we noticed the wound change and a crises.
Smells were not apparent to our noses and I'm the queen of smell.
This time we listened went straight into the doctor . The wound was taken care of and then off to get labs , blood and the push for blood cultures.
It worked !! He was admitted BEFORE he crashed!!!
He has never had back to back sepsis . I was terrified.
Even if a new type of bandage is placed or he is using a new device they know it's different. They also do not sleep unless he does.
They knew he was sick followed me around to get him ready and it was as if they lined up to get their collars on to go to doggy school.
Service dog training is a wonderful journey and it's worth it no matter how much time or cost!!!
I think Chewy can come to the hospital now I have to check that out.
Thousands of hours these pups teach me something everyday.
It's funny they know our very old Happy dog is senile and rickety they are very gentle with him. Lol.
I told Marqus to keep his spirits UP we are going to get this under control!!!
LOL now all I need is a body double one if me to care for Marqus and another to do an extreme house make over.
Oh yeah and one more to go to work and try not to go completely broke.
Thank goodness a call for my husband came in.
We are getting kinda of old to be working 7 12 hr shifts but bills don't pay themselves and we have to keep pushing.
Thanks for everyone's prayers we need them!!!
Fran