Thursday, June 17, 2010

Another Long Day at Children’s

I am shocked at how emotionally draining these days are for not only myself, but for Mike as well. We are both just totally overwhelmed and wiped out for the first hour or so of being home. We need to decompress, and love on our babies!

Mike and I headed in to Children’s at 9AM this morning. Awesome Auntie Krissie was able to rework her schedule and care for K & P such a huge relief.

Mike and I met with the transplant nurse coordinator to do some transplant teaching…basically goes over transplant before, during and after.

After that we met with the transplant social worker, basically she does an evaluation on us to see where we are emotionally, financially etc. etc.

All of these things are things that need to be done before Katy can be listed. There is a big ole list of people we need to meet with; 3 sessions of education, nutrition, pharmacy, social work, infectious diseases, genetic people, home health people etc.

Then there is a whole list of testing that needs to be done on Kathryn; blood work ( oh my word…the blood work) abdominal ultrasound, upper GI, Kidney function tests, did I mention the blood work…my poor baby girl thankfully she doesn’t have my veins and is usually a pretty good stick.

Basically, we are just about done with the pre transplant work up… we still need to meet with the pharmacist, infectious diseases, and nutrition (again) and Kate needs to have some more blood work done and the kidney function test.

So after all our meetings this morning, we ran home to pick Kate up to head back to Children’s for our appointment with GI. I was really hoping that GI would give us some clear cut facts and help us make the decision on the G tube. He did not. He was wishy washy as well and not sure that the results would definitely outweigh the risk pre transplant, although it was his opinion that it would be helpful post transplant.

So, at this point I am 95% sure we will not be going the G tube route. I know that it is a great solutions for most heart babies… I just don’t feel it is the right choice for Kate. So unless, the transplant surgeon can convince us otherwise it looks like we will stay G tube free for now. (Not ruling it out completely)

Again, as always thank you so much for your love and support!!


1 comment:

Lennie Weese said...

I know what you mean about draining. Sometimes just getting my blood drawn makes me exhausted. Sometimes on my big hospital day we bring an extra person just to drive us home because we are so tired. I have even been at the hospital and not had appoinments-for support group and such and it is just draining. I think there is something in the air. But after this is all done Katy will be listed!!!!