One Hour At A Time

This is how we had to live life today, just one hour at a time. As most of you know things can change so quickly when you are in the hospital. At one minute the decision was made to do a heart cath., the next minute they are thinking she is not stable enough for a cath. and want to put her on a machine called an ECHMO Machine to give her heart a rest. The ECHMO is a heart/lung machine that would do all the work for Mallory and give her heart a rest. It was discussed, and discussed and discussed and the final decision was made to wait it out. The ECHMO machine has big risks associated with it and would require surgery again so they wanted to wait and see if Mallory could start bringing her blood pressure up by just adjusting the settings on her pacemaker.

The pacer adjustments were made and we waited. Labs were drawn and sent, and we waited. We were told she is in "graft failure" which is very different from rejection. The right side of her heart still was not working as well as it should. Labs came back, things are looking the same. We waited some more. More blood was drawn for labs, we waited. Labs came back, there is a little improvement. This is what the day consisted of . All this time they had the ECHMO machine primed and ready in her room. We all figured since the machine was there in the room and ready to go, she wouldn't need it. :)

During all of this waiting Mallory decided to start running a fever again. They decided to put a cooling blanket on her again to bring it down and it worked. As the day progressed her blood gasses continued to get better little by little. She is a very strong little girl! She was constantly throwing the docotors for a loop. :)

Scott is spending the night with her this evening and he sent me "home" to get some sleep. When I left the hospital she was keeping her blood pressure where they wanted it and her blood gasses continued to be good, and they had started backing off on some of her medications, just a little bit at a time. The goal for this night is to keep things as is. No big changes, just little baby steps and most likely give her some blood products sometime in the night.

Tomorrow the new Cardiac ICU is opening. It is beautiful!! The founder of Build A Bear Workshop is from St. Louis and she donated the money for the new CICU. I have toured it and picked out Mallory's room already. I was joking with her nurse today about the comment that one of Mallorys doctors made, saying she would probably be on of the last kiddo's moved tomorrow because they want to make shure she is stable. Her nurse and I decided she would be the last one moved so we could make shure they knew where to plug everything in! :)

We also met Rev. Hal today. He is wonderful! He gave Mallory a little tree frog and explained that it stands for Families Relying On God. It's in her hospital bed with her as a reminder to her and us of how much we need God right now. Not that we could forget.

Thanks again for all the encouraging words from everyone!! We are SO blessed to have such a support system at home and all over the state of Nebraska.