Blessings and Burdens

I want to update on the positive side of things first.  I don't want an awesome blessing to be lost by the garbage that happened today.  Hope was taken down to the OR at 4 pm and had her liver biopsy and varices treatment.  She did very well, and came back without oxygen and was stable.  Hope was able to come back to the ICE unit and did not have to go to PICU.  That was a blessing.  Hope's liver biopsy was successful, and we should receive some results in the next few days.  She had to stay on bed rest for 4 hours after the procedure and I wasn't able to hold her.  Being so late in the day, the doctor called up to give me a report as he headed home to his family after finishing with Hope.  Once again, the varices were so small that he did not need to treat them!  Praise the Lord that these varices have been so much better than anyone ever expected them to be.

I talked to another specialist this morning and had a couple more stop by, when I was in the meeting with the transplant team.  That meeting was the worst meeting I've ever had with a doctor.  I've had some pretty awful meetings where we are given horrible news, but I have never felt so angry.  I will say that much of the transplant team is away and this should not represent who they are, as it was just one person being rude and disrespectful.  The cardiologist that attended the meeting is one that Shawn and I grew to respect and value over our time in Edmonton.  I believe that trust is earned and once it is broken, it is extremely hard to repair.  Today I lost a lot of respect and trust for this man.

The doctor came in and asked me how I felt about everything.  I shared Shawn and my concerns that everyone would continue to wonder what to do for Hope for the next few months and that no one would make a decision and we would be stuck in limbo land forever.  He began talking about why transplant might not be good for Hope, and why we needed to consider how Hope felt about having to go through all these surgeries and the fact that she might not want to try anymore.  He basically shared that parents fight for children, but maybe that child no longer wants to fight.  He said that we could move on if we lost Hope and a lot of other rude and inappropriate things.  It was not until the end of the meeting that he informed me that these were all his opinions and in no way reflected the thoughts or decisions of the transplant team as a whole.  It would have been helpful for him to lead with that.  I sat through a meeting that was absolutely taking away all hope of a future for Hope, and fought for her life, her value and her right to receive care.  I did so with the belief that this doctor spoke on behalf of his team.  If he wanted to share his personal opinions, which I could care less about, he could have done that with me privately in a more appropriate setting.  Using a professional medical meeting as a soap box to share your personal opinions, that do not reflect my own, was inappropriate and uncalled for.  It was also completely unfair to me as I was not expecting it and was alone.

The synopsis of the meeting is that we don't have any more information than we did before we arrived. The team is away at a conference and a decision will not be made until next week.  Most of our testing and assessments have been completed and tomorrow I will begin pushing for a transfer back to Calgary.  I would especially like to get back after what happened today.  I'm frustrated with the constant changing of Hope's care and would like to have ONE hospital that cares for her so I'm not told two different things all the time.

Tonight after leaving the hospital, I tried to run around and get some things done while I was alone and did not have the opportunity to spend time with Shawn and Sadie anyway.  After 30 minutes I had a terrible migraine, felt exhausted, overwhelmed and burnt out.  I'm now back at the apartment and planning to head to bed early.  I want to go home.  I want my family around me again and I don't want them to change everything about Hope's care, just to send us back and have it all changed once again.  Please pray that I can return to Calgary tomorrow or on Friday at the latest.  I'm absolutely done.