January 20, 2012

January 20, 2012

I spent most of the day with knots in my stomach.  So far chemo round three has been going OK as far as Clayton goes.  He has been urinating good in order to flush out the chemo and we have easily been able to combat his nausea with meds.   Here is where the knots come in:  Dealing with the doctors and nurse practitioners has been a bit of a pain this month here at USACW.
The first issue was TPNs (IV nutrition); the doctors here are in favor of them, the doctors in Birmingham prefer methods that use the gut and we agree with the doctors in Birmingham because TPNs can cause liver problems with prolonged use so we would rather steer clear.  Unfortunately, some of the professionals here have not been eager to accommodate our wishes.  Bottom line: we are the parents and they have to respect our wishes, disagreeing with us on the issue has only made things more difficult for everyone.
Aside from that, there have been some issues that ALL could have easily been avoided and saved everyone the stress and frustration that was caused.  However, these issues were not avoided and therefore it has made for an extremely stressful few days.  I am not a medical professional, so if I am aware that certain things could have been anticipated and prepared for in advance to avoid the situations we encountered, then I am confident that the medical professionals are also aware of this.
After some of the hoopla today, the doctor at the time mentioned that they work as a team and like to be appreciated, so let me reassure you doctor I do appreciate our doctors and medical teams more than you know.  HOWEVER, when mistakes that can be avoided continue to happen I am going to take the necessary steps to try and resolve them and prevent them from occurring in the future.  Advocating for my son is my top priority.  The fewer mistakes, the more I appreciate you and the supporting staff.  That said,

Dr. Crews-USACW- You are AMAZING.  You are a wonderful human being and a great doctor and we are so thankful for everything you did for us in the beginning of this ordeal.
Dr. Imran-USACW-  I feel very fortunate that you diagnosed Clayton.  We have not seen you as much as some of the other doctors, and look forward to seeing you again soon.
Dr. Siddiqui-USACW-  I have enjoyed having you on our service through the majority of our time spent in the hospital at USACW.   I have trusted in your care and was impressed as I watched your bedside manner grow with Clayton.  I am not sure why things have been so rocky this month, but I am looking forward to things improving once again.
Dr. Beall-USACW- We feel so fortunate to have you on our team!  You have made sure we know to contact you anytime if we ever need anything and you have lived up to that and for that we are so thankful.  We will see you again soon as well.
Dr. Terry-Mobile,AL- You are a great doctor who cares about his patients and is attentive to their needs.  Our history with you goes back to the days when I was pregnant and you have been a solid force in our lives ever since.
The Bone Marrow Transplant Unit-Children's B'ham- We are so impressed with Rookie, Melissa and Pamela and feel so safe knowing they will be part of the team looking out for us.  See y'all soon!

There are definitely more people worth mentioning, but I'm tired so for now that'll do.

2 comments:

  1. I am so glad he is peeing all the meds out! Way to go Clayton!!!!!!!!
    I pray the doctors and you can see eye to eye the rest of the way! I know Doctors know a lot, but they can't compete with a Mothers wishes and intuition:) stay strong and voice your opinions! You arevan amazing mother!

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    Replies
    1. Thank You! That is so true, us mommas know our babies better than anyone!

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