Day 9 looking at Day 10!

Tomorrow, Monday, Feb. 1st, Ruthie is having a liver biopsy. After speaking to the hemotalogist, Dr. Cantor (the main heart transplant guy... or director if you will) decided our next step is to biopsy the liver. The hemotalogist seem to believe that the blood clotting issues stem from the liver, since the liver is in charge of making the proteins needed to clot. So onto the liver. We have the GI doctors/ team involved now and they are planning on a biopsy tomorrow early morning. Unfortunately, we will not have results for a few days and that seems to be one of the hardest things about this. Its already hard to watch her have to go through so much, and then we have to wait on results. (Sigh) But we know these things must be done if we want to be on the transplant list. AND WE DO! We want to be on that list so bad!!

So since Jan 22nd, we have had a heart cath, a MRI, an open lung biopsy, MANY MANY blood labs drawn and now a liver biopsy. I can not imagine being in Ruth's shoes. So many procedures and so much sedation and pain meds. WOW! She is such a fighter. She really seems to be taking it all well. I mean she is not back to herself completely yet, but she sure is a champ! Each day as we enter her CICU home, she is a bit happier, a bit more awake, a bit more like her "normal" self. Today has been the best here yet. Ruthie is playing and smiling. She still isn't eating on her own yet, but they put in a NG tube so FINALLY she is able to get something in that belly. It has been about 10 days since she has really eaten well. Although, she is still on a upward slope, battling the whole way, we can see the top. We are almost there. The answers we have been seeking are almost in reach. ALMOST! But as for Ruthie, she is as snug as a bug in a rug right now. She is back to cat napping, instead of sleeping, and she is back to being so stinking cute. It is awesome to have that back:)It can really lift your spirts. Even though there is still so much ahead, her quirky, fun attitude has helped me focus on the now.

I hope to post pictures soon. I just need to go buy some more batteries for the camera so I can take some current picture and then download them all. Hopefully tonight will be quiet enough that I can at least upload the pictures at home and then play around with things tomorrow. But we shall see. No promises right now.

We are praying for our heart babies non stop. If you have a minute, try to keep Derrick (who is home and getting back in the swing of things), Lorenzo (who is having open heart surgery on Tuesday and has been in the hospital for 3 weeks), Cameron (who is home and awaiting the next step), Jacob (who is getting to be a big baby in Kathy's belly, Maggie (who is post fontan and doing great) and all the heart angels and living miracles in your prayers. These families are amazingly supportive of our Ruthie. It is wonderful to have the support, even when they are fighting their own battles.

Thank you for praying and for thinking about Ruthie. She really appreciates her cheering section. She doesn't want to let anyone down and thus far she hasn't:) (And honestly I don't think she ever really could).

HEART HUGS!!!
Laura

Holding on

Unfortunately, this update is not really informative. We havent spoken to the hemotalogist yet so we do not have any more information at this point. Just still waiting and praying that they can at least put their finger on the issue. Any information (good or bad) would be nice to hear. Just a plan!

On a lighter and exciting note,
Ruth has been exubated! The tube is gone and she is doing much better. She seems to be a whole new baby now that the icky tube is gone. She is still on nasal cannulas at 40% and level 6.
Besides exubation, there really hasnt been much of a change today medically. Ruthie is more awake and not so cranky:) AND she ate a whole 20 mils (a little more than a half ounce) which is exciting since she hasnt been given any food since 12:30 am Wednesday morning. I think that as we work on her feedings that she will become more and more aware and happy.

Right now she is resting and being very calm. HUGE difference from last night. We havent had to give her any morphine since her exubation. We are pretty excited because she had to be given 4 doses last night in order to calm her enough that she could rest. So no morphine seems like a good deal to me.

I dont feel like I say this enough, THANK YOU! THANK YOU! THANK YOU, for all your prayers and support. It is really helpful to have so much compassion expressed. I feel the love and I feel the prayers working.

We hope to know more about the blood tests soon. However, some of these tests are extensive and it may take a few days for the results to come back and then for the hemotalogy team to analyize it all. So we are waiting. Waiting on an answer. Waiting on a plan. Just waiting. But while we wait, we take in each moment and enjoy what we have now. We are on a road trip and on every road trip, there are detours, bumps and stop signs. Right now I feel as though we are just at a yeild.

PLEASE pray for Ruthie, along with all of the heart babies. God is in control and as long as we believe and have faith, everything will be okay. Whether or not we like the "okay" that occurs is another story. But it will all be okay.

HEART HUGS!

LAURA