The Murphy Family

Children’s Day 3

I feel like I have so much to update, since yesterday afternoon and today. WOW what a long day it has been. Many decisions have been made,and I feel like if ONE MORE PERSON COMES IN TO TALK TO US…I MAY LOOSE IT! I’m DONE, I’m tired, I am sick of hearing all the speculation. I WANT ANSWERS and no one seems to have any. I want to go back to this past weekend of cookouts, and visiting with family, running through the sprinkler and blowing bubbles with BOTH my babies! I feel like everything has changed, in a matter of days. New doctors, new nurses, new meds, new plans. For the 1st time I feel like a heart mom and not just a mom. We have been so blessed that Kate has been so well, that although I always knew this was a possibility, I never really was a typical heart mom.

So yesterday we met with and decided with GI and the team (transplant team, from this point forward when I refer to the team its the transplant team) that we would put an NG tube (feeding tube from her nose to her tummy) as a test to see if her stomach could handle the feeds before, surgically placing a G tube. The reason for the feeding tube, is to see if we can get Kate to pack on some pounds, with additional calories. Basically, it would be impossible for us to actual feed Kate the amount of calories we think she would need to actual see a weight gain. (Kate’s heart is working so hard it is burning calories so fast that she needs rocket fuel) Ideally, the plan would be to give Kate 3 months to try and gain weight, before listing her.

Kate was not a fan of having the NG tube inserted, however I am happy to report that once it was in she didn’t seem to mind one bit. I was very surprised at her non reaction. I had guessed she would have in pulled out within the hour. (very thankful she did not) Kathryn tolerated her feeds just fine.

We met with the team this morning to discuss the next step, which in their mind was placement of the G tube. Mike and I weren’t completely sold on that idea. We really wanted a better feel of when they wanted to place Kate on the list, and what needed to happen before doing that. I also am a bit doubtful that increasing her calories will help her gain weight. We have been on a high cal diet including pedisure supplements and haven’t seen a change. Mike and I went back and fourth with the team and it was decided that since Kate was tolerating the NG tube, we would leave it in and run the feeds at night while she sleeps to see if she gains any weight, we will do that for the next 3-4 weeks and then make a decision. If it works we will then consider having a more permanent G tube placed. We all agreed that this was a good compromise for right now.

We spent the rest of day working on the logistics of getting discharged. OH MY WORD! What a process. Mike and I spent a lot of the day being educated on the transplant process, learning how to do Katy’s feeds, new meds etc. etc.

Finally at 5:30 pm we were ready to be DISCHARGED!

Looking forward to getting back to “normal”l…well finding our new “normal”

Mike and I can not thank you enough for all your prayers, and kind words. They have really gotten us through the past couple days. We have a long journey ahead of us and are so thankful for your love and support.