Thursday, June 03, 2010

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.

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McKay Family said...

Glad you are home and that Katy is tolerating the NG tube. New normals are never easy at first.

mommara said...

Praying for your sweet baby girl and family.

Nel said...

Home is the best place of all! Glad you are all there:)

Kristyna said...

Im glad you all got to go home! Justin, Logan, Mason and I are all thinking of you! We love you all tons!! We will be sending our great thoughts your way everyday. I hope Katy girl gains that weigh. XO The Murphys of Lowell!

Lennie Weese said...

I am praying for Kate and you guys. It was so scary when they first let me out of the hospital with IV medication, I was so scared to do something wrong and I was so tired I didn't think I could actually do it. It does get better and it does get easier! I also lost a lot of weight pre-transplant, and have gained some back after the transplant.
Make sure to get some "me" time to clear your head.
I make blankets for (it gives hand made blankets to ill children), I would like to make one fore Kate, what are her favorite colors or things?

Anonymous said...

Hey I found your blog and read this about the gtube. I have cystic fibrosis. I had to get a gtube lasst year. I HATED the idea. I was already drinking supplements and on a high cal diet and it wasn't working so why? Well I got my gtube and I LOVE IT! I have put on 20lbs. KEPT it on. I do the feeds at night, eat normal during the day. I get about 1500 cals at night (3, 500cal cans) Some mornings I felt nauseous at first. Try and get her to eat bread, it helps. Also I started out not so hungry until around noon (which is normal) I got used to it after a while.

Also if you get one, go with the AMT brand. The connectors are WAY better. They don't leak as bad as the mickey stuff does.

If you have ANY questions please email me at

I would love to talk to you about it b/c I knwo how big of a decision it is -and how life changing it feels.