Three tickets for the Roller Coaster please

Our newest journey begins. Mallory had a pretty good night. We got a call this morning at 2:45am saying that Mallory's blood pressure was "soft", which means lower than they wanted to see. She was doing fine but they did an ECHO to just take a look at the heart. The left side was working well and the right side was working o.k. They increased her sedation and also used a medicine to paralyze her so she could stay still and not work against the machines.

At 6:00am I called to find out how things were going. Things were much the same, blood pressure was up but she was running a fever of 105 degrees. When Mallory would move around her blood pressure would go down, and when she was not moving her pressure was where they wanted it. They told us to go back to bed for awhile because the doctors were going to do rounds and she is sedated and wouldn't even know if we were there. At this point we could sleep for just a bit longer and got up and ready and went to the hospital anyway. :)

The doctors ruled out any infection as the cause of the fever. They are thinking it's a "cardiac fever", which means the trauma of surgery is causing the fever, or it could be a side effect of one othe medications they are using. Wouldn't you know it, Mallory couldn't be a simple transplant. Due to her first two surgeries her anatomy is different and Dr. Huddleston had to do extra work on her PA before he could sew the new heart in. Our goal is to keep her stabilized and get the fever down. They are going to use a cooling blanket to help with that.

One of Mallory's medications is a form of Viagra!! It has been shown to help in cases of Pulmonary Hypertension. Scott was wondering if we could take any unsed Rx home with us-just in case he would need it in the future. HA HA! You have to find some kind of humor in these things or it would be a VERY long day! :)

All day long Mallory's blood pressure went up and down. They have tried numerous ways to get it under control. At 6:20pm the doctors decided we needed one more ECHO to make sure things were still looking good on the inside. One thing we all need to remember is the first 24 to 48 hours is the most critical. We also need to remember that Mallory's lungs are not used to having so much blood running through them, and they need time to rest and learn what to do with this new anatomy.

The ECHO showed there had not been a significant change since yesterday. The left side is still working very well and the right side still needs time to learn how to act. It's a waiting game. At this point in the evening (9pm) we are back to the same point we were at this morning. It reminds me of the childrens board game "Chutes and Ladders". One minute you are on the top, and the next you are back at the same starting point.

One good thing is her fever has gone down significantly. Instead of being 105 she is around 99.4 degrees. At this point we were instructed to go home and eat, drink water and sleep. Jackie her night nurse will call if there is any change at all, and we can call her any time. She will be awake all night, and Mallory is her only kiddo for the night. We will start fresh again in the morning.

We would like to thank everyone again for all the wonderful messages you have left. We want you all to know that while Mallory is in the PICU we are not allowed to even have our cell phones turned on when we are in her room. This will change when she is moved to "the floor", out of the PICU. Thanks for all the love and support I will continue to update in the evenings. God bless you all !!

Wendy and Scott