Two Days, Two Trips

Warning... This is a bit long. A lot going on!

Whew, what a weird 72 hours. I can't believe all that has happened. Not only to Ruthie Rue but to the SLCH CICU.
Thursday started with a bit a of bump. Ruthie still had a little infection from her broviac iv and her stomach had become descended over night. They stopped feeds around 5 am and began thinking what to do next. In rounds, the gross of doctors and nurses decided three things needed to be done.
1. We needed a stool culture to rule out a gut infection.(Ruthie had been vomiting, having diarrhea, and had been descended. Then the vomiting and diarrhea stopped suddenly).
2. We needed to remove her broviac because it caused the infection that started on Monday and now had a crack in it. (They had started a peripheral iv over night.)
3. We needed to go to radiology to meet with a GI doctor to check for mal-rotation of her intestines. Mal- rotation is a congenial intestines defect that would allow her stomach to flip on itself. This in turn would require another surgery (Her xray showed that her NJ was weirdly placed and that her intestines were pushed over a bit.)

Dr. Ghandi removed her broviac around 8:30 am. Ruthie was not too pleases with this decision, but she seemed to settle down a bit. We finally got her to sleep and then radiology called saying "If its' gonna be today, its gonna be now." So ROAD TRIP! Well hallway trip. Ruthie's eyes popped wide open once we hit the elevator for our ride to radiology. She was so happy to see different things.
On the way to radiology, Ruthie decided she needed to kindly provide her stool sample. FUN FUN! Luckily, Josh remembered a diaper. WAY TO GO! So after a quick diaper change, they injected dye into her stomach and intestines to see her blood flow. Both set of images looked good. No signs of mal- rotation!
So before 11:30 am, Ruthie had checked off everything off her list! However, Ruthie was still rather fussy. We had tried Tylenol and orajel. We tried holding her. We tried rocking her. He tried leaving her alone.
Josh, once again, jumped in and made a save. Ruthie's right leg was rather swollen. Her name badge was almost popping off. We called in a nurse and within minutes her busted IV was taken out. We propped Ruthie's foot and waited for the IV team to arrive to place a new IV in her arm. Ruthie took it like a champ and rested comfy for part of the afternoon.
Rounds that night lead to feeds being started again, every 6 hours increasing by 5 mils and an idea of rest.

Friday started rather quiet. When I got there Ruthie was sleeping. She had a pretty quiet night, but she desated around 5 am. She was placed on oxygen through nasal cannula. During rounds, they discussed how they need to figure out why her levels were lower and why she needed O2. After a bit of discussion, it was decided that they needed to run a few labs, start monitoring her head and lower body blood flow, get a chest xray and then discuss adding diuretics or another heart medicine . They also were thinking about an echo. The xray looked like we needed to start diuretics to move some of the fluid around the lungs away. They hoped this in turn would bring up her stats. It sounded good to me.
About an hour later, things changed a bit. Dr. Sharkey (Cardiology attending) wanted to schedule a heart cath for next week. She wanted to know actual numbers and to see the Sano shunt. An echo would not give them "real" answers. I agreed and she planned on diuretics until then. Dr. Oren (CICU attending) came in a little later saying he wanted a central line put in instead of a PICC. As he looked for placement, Dr. Sharkey returned and they decided since he wanted a central line and a new NJ and she wanted a cath, that they would do EVERYTHING that day.
Within a few hours, I was signing consistent forms and we were talking to the anesthesiologist about her intubation and sedation plans. At 11 am, Ruthie was in their hands and we were off to lunch.
By 2pm, Ruthie was wheeled back into her CICU room still paralyzed and intubated. Dr. Balzer added two stints to her Sano shunt during the cath and her NJ and central line were placed. The pressures in her RA were higher than her last cath. This basically means we made the right call back in January to change our path towards heart transplant. Her pressures are much too high for the Glenn and it wouldn't have been a good recovery.

So, around 4pm, Ruthie was extubated. She was very relieved when the tube came out. She had the cutest look of, Whew! on her face.

She is currently doing well. She is on O2 still, but we are working on weening it off. She is starting feeds increasing 5 mils a hour until her goal of 30 mils an hour. She is also well rested after 10 hours of sleep last night.

Now we wait.
And while we wait, we thank God for the 3 miracles that happened in 48 hours in our unit.

Thursday afternoon, a baby girl received a heart from Barnes. This happened a day before she was to be placed on the Berlin heart. AMAZING. She is now pretty and pink and so active. It makes me have so much hope. I am so happy for her parents. I am so pleased that God has granted them a second chance.

Friday night, another little girl received her heart. Once again Dr. Ghandi, did the transplant. She is currently recovering next door to us.

Friday morning, as the little girl was wheeled into the unit, a little boy (Nolin) was wheeled to the OR for his new heart. Nolin had been waiting a month longer than us. We were thrilled to watch him go to the OR. I was crying. We have been saying since day one that Nolin deserves his heart before Ruth. And once he gets his, we can focus on getting ours. It is only fair that Nolin get his first. WELL, AMEN!
Dr. Ghandi amazes me. Three heart transplants in 48 hours. WOW! GOD IS GOOD!

We are so thankful for God. We know that miracles are his handy work. He does marvelous things.
Thank you God for being our rock and for showing us signs of peace, hope and joy.

Please keep all of those babies in your prayers. Pray for all the heart babies. Pray for Ruthie. Pray for the families. Pray for donations.

Thank you!