Labor Day Weekend

It’s another day here in St. Joseph’s hospital. Lilly did ok through the weekend. Here is how the weekend went….
Saturday:
Saturday morning Lilly’s central line that was in her wrist stopped working. They decided to put in another PIC line. Unfortunately due to her swelling it was not possible to put one in. So they decide to use her neck line that was put in when they did the coart surgery. Unfortunately this line stopped working towards the evening hours and was leaking the medicine down Lilly’s back. They tried again to put in a PIC line but were still not able to. So we had to settle for an IV in the head. It was heart wrenching because they were not able to give Lilly any pain medicine so she was in a lot of pain. We stayed late into the evening talking to her, holding her hand and rubbing her head. While we were by her bedside she reached up and touched her daddy’s face. It was a precious moment.
Sunday:
We arrived in the late afternoon and noticed that Lilly was more swollen then the previous day. The good news was they were starting to come down on the ventilator support. They told us that their goal was to remove the ventilator Monday am.
Monday:
In order for the team to remove the ventilator they need to run several tests to make sure that Lilly was ready to do it on her own. Unfortunately these test provided several negative results. During Lilly’s echo they noticed that Lilly’s heart was having a harder time pumping and there appeared to be extra fluid around the heart. They also noticed something on her liver. They ran a test on the liver but we do not have the results yet. They ran a blood test which showed that Lilly’s heart is in heart failure. They think this is due to the extra fluid she is retaining. Because of these results we had to go back up on the ventilator settings and decided for Lilly’s sake we would not push to remove the ventilator.
Tuesday
This am they did an xray and discovered a large amount of fluid surrounding Lilly’s left lung. In order to help her lung, heart, and everything else it was recommended that she have chest tubes reinserted into her chest to drain the fluid. They put the chest tube back in at 2pm this afternoon. We also had to put her on higher ventilation mode to help her breathe. Because Lilly’s body is swollen she has a hard time maintaining IV lines. They will be putting another central line into her body either today or tomorrow. In order to do this it’s another trip back to the OR. During all this fun we had the pleasure of meeting Mark Reynolds of the Diamondbacks. He was visiting patients on our floor. He came into the room and I got to visit with him and his wife about Lilly. He gave her an autograph picture and cute stuffed puppy. Lilly slept through the entire visit. Chance of a lifetime Lil and you slept!!!!!
Although it seemed we played the one step forward three steps back game this weekend we are grateful that Heavenly Father has given us another day with her. We continue to pray that Lilly will get stronger and be able to jump the hurdles she is facing.
Thank you for your support and prayers.