Mornings seem to be the roughest

Yesterday, we came in ready for Ruth's liver biopsy. The plan was 9am start time, so we arrived at 6:15 in order to be here for CICU morning rounds and to spend time with Ruthie Rue before she was sedated. Well, unfortunately when you have plans, God laughs and says, "Oh, my child. I hold all the plans. I am in control". And that he is every bit of true. So yesterday morning, we spent from 6:30 am to 10:30 am trying to prepare for a liver biopsy that should have taken place at 9am. Since Ruthie has been here for 10 days, she has received many pokes and sticks for blood draws and IVs. Knowing that, it makes the morning we went through yesterday a little more understandable, but not easy. Two nurses, two transport team members, a doctor and 8-10 sticks later, we had another IV access. Whew! In order for the liver biopsy to take place we needed two IV accesses. One for her heart medicine (the PICC line) and one for all the blood products Ruthie needed (i.e. platelets, creo, and Fresh Frozen Plasma). Ruthie needs those products because her clotting factors and times are a bit low. The doctors wanted to make sure that clotting would not be a problem since they would not be able to physically see a bleed (being a non invasive or "open" biopsy). So by 11 am, the ultra sound (to locate exactly where they wanted to stick the needle) was finsihed and Ruthie was starting to get sleepy from the sedation medication. 30 minutes later we were back in the room with her and her biopsy was complete.
The rest of our day went well. Ruthie slept most the day. She was able to be put on contineous feeds (10 mil an hour) and did not need any pain medication.
At evening rounds in the CICU, Dr. Cantor (the heart transplant BIG WIG) stopped by to tell us that we will have an answer to all of this on Wednesday. YAY! We will know exactly what are next steps will be on WEDNESDAY! Oh so exciting, but oh so scary. But having an answer is what we want. Knowing what path we will be on, helps. Or at least I think it will help. So now we are just waiting on Wednesday.

Today, started with much more excitement than yesterday. Although we had a rotating door of people trying to get IV access, I would trade yesterday for today easily. Today as we entered Childrens, I received a phone call. The CICU doctor was calling to tell me that Ruthie was fine, but that her heart rate had climbed significantly and that they were in the process of setting up the defibrillator to shock her heart into a normal beat. I quikcly informed the doctor that we were at the front desk getting our CICU nametags and that we would be there ASAP.
When we enter the Ruth's room, her heart rate was at 225. WOW! I hava never seen her heart beating that fast. So many doctors were there talking and watching. It is a bit unsettling to walk into your child's room and see all this going on, especially when we expected to be moved to 7 West today.
After a quick echo to check for blood clots, we were escorted out of the room and Ruth was given sedation meds for the defibrillation. After what seemed like a LIFETIME, the doctor came into the Consult Room we were guided to and said it all went as planned. Walking back into Ruth's room, we saw a heart rate of 140 and O2 at 75. What great numbers.
Right now we are just letting Ruth rest. The doctors are keeping a close eye on this fiesty girl. Apparently she wasnt ready for 7 West. She made that perfectly clear this morning.

We hope that today is extremely quiet and that Ruth keeps eating. They should be starting her feeds again shortly. So now we are back to waiting.

PRAY for Cameron (who is having a heart cath soon), Lorenzo (who is having open heart surgery today), Derrick (who is trying a fat free diet at home post- glenn), Jacob (who is kicking his momma all the time and is preparing to make his entrance) and Maggie (who is post-fontan and looking at O2s at 90%). PRAY hard for all those heart families. Also please pray for Ruthie. Tomorrow is a BIG BIG day. I hope we hear what we want, but at the same time I know whatever we hear we will handle.

BIG BIG prayers!

Heart hugs!

Laura