Today definitely didn't go quite as we had planned. During the night last night, Ella spiked a small fever and her heart rate increased. Her hemoglobin also dropped so they had to start a transfusion early this morning. Needless to say, I got very little sleep. When Ella woke up, she seemed about the same as the last few days. Not a lot of energy, didn't want to sit up very much and was just kind of hanging out. She would just lay in her crib and watch her DVD player and occasionally kind of sit up for a few minutes but never seemed very comfortable. We still weren't sure if she was sore from the bone marrow biopsy or if the chemo was making her feel blah or what. They wanted to do another echocardiogram of her heart to see if the fluid was better, the same or worse. It appeared to be about the same. They have been watching this extra fluid around her heart for the last few days. They wanted to see if it got worse or if it might get better with the chemo. They were deciding between going in and trying to drain it under sedation or waiting until they do the surgery to put her broviac line in her chest because then they would have her under general sedation. But they weren't going to be able to do the broviac placement until after the chemo is done which won't be until thursday night. The cardiologist, anesthesiologist and oncologist spent some time coming up with a game plan and decided that they should do something about it today because if the fluid build up got worse all of a sudden, it could become an emergency situation. So they moved her up to the PICU and got everything set up in the room. The doctor started the sedation and as soon as she started to go to la la land, they asked us to leave. He had told us that IF she had any breathing problems, they may have to intubate her but he hoped not. Joe, myself and my friend Amy went out to the waiting room to wait. About 10 minutes later the oncologist came out to tell us that when they started to put the needle in to drain her heart fluid, she started to stir and her blood pressure and breathing started to slow down. They didn't want to take any chances so decided to intubate her (put a breathing tube down her throat) so they had complete control of her body. The rest of the procedure went smoothly, however, they had a lot more fluid come out than they expected and it was mostly blood. It was DEFINITELY the right call to do the procedure immediately. They decided to leave the chest tube in overnight to see if it continues to drain. If it appears to have stopped by morning they will hopefully remove the tube. They also are leaving her intubated until morning so they can keep her heavily sedated so she won't mess with the tubes. She appears to be very stable but it is hard seeing her basically paralyzed and asleep. Thankfully she has two nurses all to herself tonight who will watch her every bleep on the monitors. They did restart the chemo once they got her all stabilized. They stopped the chemo during the procedure so that will put us a few hours behind in our 96 hour infusion. They will send the blood off to pathology to see if they can determine what the cause of the fluid build up is. I took pictures of her today but this computer doesn't have a way for me to download them so you won't be able to get the full effect of what I am talking about until I get home to my computer. Because Ella would be sleeping all night and had such terrific nursing care, I decided to come over to the Ronald McDonald House for the night and get a good night's rest. The house is 3 blocks away from CHOC and we will now have a room until she leaves the hospital which will be so nice for my husband on his work days.
Whew....that was a long winded post but I wanted to get it all written down tonight so that everyone can continue to pray for her. I hope it makes sense as I am mixed up and confused at this point in the day. Again, I am beyond amazed and appreciative of the support everyone has been giving us. Thank you so much!!!
The end of the 2017-2018 School Year
3 weeks ago