Over the past 6 weeks....

We have been on quite a roller coaster over the past 6 weeks. Ruth has gone from planning on the Glenn procedure to being listed for a heart transplant. She has endured a heart cath, a lung biopsy, a liver biopsy, a sedated MRI, numerous ultrasounds, countless x-rays and echoes and of course PICC lines, Art lines, Central lines, a Foley cath, NG suction, NJ feeding and I am sure I am missing things. However, throughout it all she has been a trooper. She has finally recovered from all the poking and prodding and is in the "upswing of things", per say. She only has one central line in called a double broviac IV that is located in her chest. She is on a handful of IV meds that help her stay comfortable while she is waiting. She still has her NJ in for feedings, which by the way she is now at 30 mils an hour... so for those who don't want to do the math that is 24 ounces of 24 calorie formula a day!!. WAY TO GO RUTH! Ruthie is on the ventilator still, but her vent settings have changed. She is tolerating being on Volume support instead of Pressure support. Her doctors last week said that her moving to Volume support was a huge MILESTONE for her! YAY! She is currently anywhere from 25% to 35% O2 on the vent and her o2 sats have been from 68-85.
Besides some medical tweaking, Ruthie has not had any major issues. She is sitting up in her bouncy seat and sometimes in her boppy. She is starting to smile more and more each day. She is even giving some of her favorite nurses smiles. They are pretty heart melting. Some of her nurses will stop by (even on days they don't have her) to visit and to get one of those amazing grins.
And on an even better note, she is now able to wear clothes again!!! The doctors feel that there is really nothing to do but wait and since she is so "stable" we can dress her up! WOO HOO! It is so nice to see her in clothes again. Ruthie is pretty excited that she is back into clothes too. What girl wouldn't be? No longer just laying there naked and on display.
So all and all, things are going well. Ruthie is truly holding her own. She is resting up and becoming stronger each and every day. Everyone (nurses, doctors, family) can't believe how well she is doing. They keep saying that the stronger she is now, the better she will do during and after the transplant. So let's get big, strong and happy:) Check, check, and a BIG check on happy!
Now we just wait. I am once again hear the words Dr. Huddleson spoke after we were listed, "This is the most frustrating time". Amen to that! Amen! Waiting is so hard, so demanding, so confusing, so emotional. We just hurry up and wait. But if waiting is what we must do in order for Ruthie not only to get a heart, but the BEST, most suitable, heart for her, then we will wait as patiently as we can.
I am not going to lie, it isn't easy waiting. Every morning, I wake up a little disappointed that I slept through the night without a "heart transplant" phone call. Every time we go to rounds, I am holding my breath thinking maybe today they will say, "Okay, so the plans for the day are to get Ruthie new heart". Just hoping and praying every time Dr. Cantar or Dr. Huddleson walk by that this is the time they walk into the room and tell us, "Lets get going!"
But alas, I really do not have any complaints. I love SLCH! I love the staff! I love the nurses, the doctors, the techs, the respiratory team. I am amazed at the amount of compassion people show to one another within these walls. Everyday there is another miracle being performed. But at the same time, everyday there is another angel being called home. It is such a heart-filled intense place.
We have an amazing support group of family and friends. They are there to visit, to talk to, to cry to and with, and to call at a moments' notice when I feel overwhelmed. I appreciate all of our family members that have made this journey so much more bearable. You never realize how many people care until you hit those tough times. Well we have had our tough times, and the support has been tremendous. It is truly amazing! Our friends and family are the glue that hold us together.
Ruthie is so blessed to have each and everyone of your in her life. She is receiving so much love, support and best of all prayers. And these prayers are being answered. We prayed that Ruthie would be listed and that happened. We prayed that she would become stronger and healthier for her transplant and that has happened. Now we are praying that we have the strength to wait. We pray that God will grant us courage, strength and patience. We pray for the family who will eventually turn into Ruth's donating family. We pray for their comfort and peace. We pray that God will guide them throughout their struggles. We pray that each family that is in such a life changing situation will be guided to donation. We pray.
So between praying and waiting, we are still here. We are still ready to fight. We are still ready to wait. We are here for the ride. We know that God's timing is perfect and that His will is what we need to follow. He has a plan for each one of us and we just hope that whatever His plan is for us, especially Ruthie, that we can handle the outcome. We pray and then we turn our lives over to Him.

Sorry about the long wait for another posting. And sorry this posting is forever long. I am going to focus more on blogging again now that I feel like we are at a standstill.

Thank you to everyone!
God Bless!

Laura