Saturday, August 25, 2007

Who openned the gates of hell?

Well life has gone nuts.. more nuts than normal... Chris is back in hospital and I was told his first night that they would be keeping a very close eye because he was the sickest one in the hospital. OK wait a minute. There are people in hospital dying of cancer, there was a man with meningitis.. and Chris is the sickest one.. so of course I didn't sleep at all that night. He has been in and out of hospital for the last month. He seems to be feeling better now though so hopefully the trend continues and he is on his feet again.
We have offended the dialysis manager because we choose one hospital over another because it better suits our family's needs and offers more of a family centered care approach. So now they are threatening to take away Chris' home dialysis machine.
We really need the machine. It is our lifeline. Chris is a new immigrant so he does not qualify for any social assistance. We need his income to meet our goal of being debt free and in our own house by New Year's. But, more importantly he needs his job to keep his sanity, to make him feel worthwhile and like he has something of his own. His work has just agreed to enroll him in an apprenticeship program. He was so excited and loved work and the people there. He was happy that he was finally able to "support his family" and said he finally had a job he liked to get up and go to.
Dialysis refuses to see his treatment from a family centered stand point. It seems that in the medical field everyone is talking about family centered care but it is more talk than action. Some programs and some hospitals do it well. But, either because end stage renal patients are normally sterile and Nathen is a true gift, or because we are an oddity a young family on dialysis. Dialysis refuses to see it's care from a family care standpoint.
Living an hour out of town treatment is always a family affair. At home I sometimes set up and clean Chris' machine for him. If he does care in Calgary I must pack up Nathen and drive Chris to dialysis. After dialysis Chris is often to ill to drive. With Nathen being sick 4 to 5 trips to Calgary a week are not good for him and it takes me away from my breast pump and thus my milk production suffers and in the end Nathen will suffer. Why is it so hard for medical professionals to understand there is so much more to treating a patient.
Patients are often their best doctors, they know what they need they are in tune with their illness, the risks they are willing to take and the multifaceted nature of their lives. Priorities sometimes have to be rearranged but some aspects of care especially for chronic and terminally ill patients should factor in the immense value of family.

Saturday, August 4, 2007

The world needs more special kids

My husband and I have been unable to find but one book which does not focus on grief now that you have a new baby with Down's syndrome. I think more people with Down's syndrome is what the world needs right now.
People with Down's syndrome are more intune with themselves and others they are able to read a situation or peoples reactions annd have wonderful social skills. At a time of war when a bridge collapses and the fist comment on CNN is that it could be terrorists, when we can't see the forset for the trees, our special citizens could show us the way to reconnect with one another.
I truely believe Nathen is a blessing we wanted him and still do and I am not grieving. I believe that Nathen was sent to us to teach us patience and how to be more intune with each other as a family.
I just finished reading Mariane Pearl's wonderful book about the death of her husband and how the world needs seekers of truth and people who know how to live and enjoy life. Who knows that better than someone with Down's syndrome.
I want to hear stories of achievement, happy experiences, and stories of celebration about our children, friends and family members who just happen to have Down's syndrome.

Thursday, August 2, 2007

The current state of events.

I am a new mom and newly wed. My husband and I have a beautiful baby boy, Nathen, who happens to have Down's syndrome. Nathen requires open heart surgery to fix as the cardiologist puts it a HUGE hole in his heart - he basically has a 2 chambered heart with a single valve.
Nathen is a God send. We love him more than life itself and honestly do not think he is "special".
However Nathen is not growing and that is concerning. He is not growing because his heart is burning all his calories - that and he is a busy baby. He is not even 3 months old and is on 2 medications and 5 suppliments. Now I have to start adding conola oil to his milk in hopes that the added fat will plump him up.
My husband needs a kidney transplant and is on hime dialysis - everyday is a medical adventure in our house. But, as Canadians we are getting our tax dollars worth and probably yours as well from our healthcare system.