Thursday, November 8, 2012

A Day at the Zoo: living life

Can you see Mr. Lion in the background from our visit to the zoo
Bryce gained more weight!!! He is 15.99. He does not have to go back to the hospital this weekend for an ngtube as we has thought. Way to go little man.

Our trip to the zoo was amazing! What fun with sweet wonderful friends. Love the lions!! Gibbons!! Cheetahs and penguins!!!
We are very happy to be around friends. Thanks everyone for your time and for skyping.

We are really focusing on increasing Bryce's weight. He is still at 1% weight. Given that our pediatricians told us he was just fine until August and at 3%, he was doing good, we are optimistic with more help we can get his weight back up soon. 

Our new pediatrician is great; we feel that he is really looking out for Bryce. We had no problem with the ng tube last week and he gained 5 oz.. It's going back in soon until we can figure out when we can get his RSV vaccination, then so we can make a plan for his future g-tube.
Its been a challenging 4 weeks with exploring the medical world and figuring out  who will make the best medical team here in Portland.  Shriners has been great, but they operate separately from other medical facilities. It is my suggestion to all mothers to always get copies of your records especially the growth chart. There is a serious disconnect in our system with getting records to doctors. Have doctors write down the care plan for any child with a complex condition, so that the resposobility then continues to fall on the providers to communicate with each other before possibly giving information about our son that could potentially put his health /life at risk. This is why second opinions are so crucial.

We are learning to become more assertive. It was shocking how many professionals have acted like kids in a candy store with our son's diagnosis. The  Doernbechers pulmonology and  feeding clinic were so excited that they just didn't review any of our records nor were willing to go over the one's I brought . I couldn't believe the pulmonologists prescribed a cough machine for us but never told us how often to use it or when. They only discussed feeding issues and after appointment when I tried to ask about the machine or other respiratory issues, they said they wouldn't help me unless I get a g-tube first.  Mothers are given a natural instinct for a reason and when a rx or an appointment feels wrong, a mom must get another opinion. The sad truth is that perhaps teaching students may be more important than caring for patients.

Bryce's new feeder seat from FSMA
We found that when doctors fail to look at the entire picture, talk to the mother respectively, read the records from all our providers, they  neglect proper care and potentially endanger the lives of others; in our case, our baby boy.

As I move forward, I appreciate our excellent team that we have found. I am expecially grateful for the Washington County Nurse who comes to our home to weigh Bryce and help us understand complicated information. I am most thankful for Early Intervention and their work with us and for carefully documenting not only his progress dating back to August but also our attempts to find care.

While I end this blog post for tonight, I feel much better. I know our new team now consists of some great folks.  My meditations and prayers to be more patient is working.  Touching base and talking to other moms with children of SMA has been a blessing and very therapeutic. Having a village of love around us makes my heart warm and keeps us believing in love, life, and hope. Never stop living is our new family motto!!  Love and peace to all.

1 comment:

  1. Hi Jenni,

    Thanks for the updates, its great to read about how everything is going and how amazing the three of you are in staying so strong and positive. We loved the 9-month celebration video, thanks for sharing that. Thinking of all of you and sending all of our love.


    Eyal and Steph