Well after another few hours of waiting at the hospital Mia finally has another tube in! Yes she seemed to get the last one out of her nose again...I don't blame her! This time it took 3 different nurses, 2 goes each and it was in...then a little bit more radiation to check it was in her tummy not lungs and we were heading home!
This has got to stop! I hate seeing her go through this, she screams and fights so hard. She can Be a strong little girl when she wants to be!
We have to get this tube out and real food in!
So, with the time we had waiting at the hospital I got thinking- I really don't know that much about her Arnold Chiari Malformation 11 diagnosis. Yesterday I decided that would be my focus for my research. Well I ended in tears! This is the first thing I read:
The prognosis differs dependent on the type of malformation (i.e., type I, II, III, or IV).Approximately 33% of individuals with Chiari II malformation develop symptoms of brain stem damage within five years; a 1996 study found a mortality rate of 33% or more among symptomatic patients, with death frequently occurring due to respiratory failure. 15% of individuals with Chiari II malformation die within two years of birth. Among children under two who also have myelomeningocele, it is the leading cause of death.DEATH!!!
OMG!!! Does this mean Mia? Is this how I am going to lose my little girl? When? before she is five? that's only 1 yr away....I just lost it.
I fed Mia her breakfast( well milk through the tube) this morning and i stared crying...thinking about what I had found out. This can't happen. I need to research more and find out what can be done.
I always look at my little girl and think what would happen and what would i do if I lost her. That beautiful smiling face, her laugh, her cuddles and snuggling in to me at night when we have our bedtime cuddles. I know this sounds morbid but these are my thoughts.
My life's mission is to find every possible therapy or surgery to give Mia the best chance she can have.
She is making sounds like she wants to talk or sing to her favourite Guy Sebastian song....I know she can do it again. IF WE CAN JUST GET THIS TUBE OUT!!!!!!
okay, let me take a step back as i often get carried away: so what is Arnold Chiari Malformation 11 would be what some of you would be asking...and alot of the nurses ask that too when I tell them what Mia's conditions are!
Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.
OKay so i have spoken to mums in the USA and a few of their kiddies have had surgery and have been alot better after. Why are we not informed of these things here? I get so frustrated when i find things out through the forums I am part of and then i end up informing medical staff of these options. Isn't this their job? isn't this what they are paid for? I feel like a real pushy mother when i suggest things to them.
Then I find this out....
Individuals who have a CM often have Tethered cord syndrome occurs when the spinal cord attaches itself to the bony spine. This progressive disorder causes abnormal stretching of the spinal cord and can result in permanent damage to the muscles and nerves in the lower body and legs. Children who have a myelomeningocele have an increased risk of developing a tethered cord later in life.I am so glad I spend my mornings researching.We are off to Adelaide at the end of April. Was meant tot be March but they are too fully booked. So I will take my list of questions about everything and see what they can do for My Mia.
Sometimes it feels like because we live where we do it doesn't matter about us! If we lived in a major city things might be different.
