Last night, Ella was exhausted but she would not go to sleep. At 1:30am, I pulled the trigger and we gave her Benadryl via IV. It was fast acting – she was asleep in 10 minutes. So, last night provided a solid 5.5 hours for me. Even better, we were able to keep the room quiet enough and assessing from doctors to a minimum in the morning too – Ella did not wake till 11:30am.

Before we went to sleep last night, the resident could tell that Ella was getting fluid positive and wanted to dose Lasix again. I was fine with this plan, but she also wanted labs (the earlier attempt for labs via the IV did not work). When really trying to figure out why she wanted the labs, it became apparent that she was concerned that her potassium was too low (it was low ont he last blood draw). After talking through it, I requested that she chase the Lasix with another dose of potassium. Since we were giving the dose PO (via her g-tube), Ella’s body would take what it needed and pee off the rest. Also, I convinced her to hold off on placing the order for the labs. I knew that we would likely need labs today, but I wanted to have the day team write the order and make sure they did not want to pull anything else.

When the day crew came on, Ella was still fluid positive. The midnight dose of Lasix did not do much. So the goal during rounds: cluster as much as we can with a blood draw today and always chase the Lasix with potassium supplements. More importantly, unless there is a really good reason, not even discuss another set of labs until Monday. One thing that made things so much nicer: even the crew that was rounding, knew Ella specifically and respected our input. Sure enough, they implemented all our suggestions. In addition, they gave her a larger dose of Lasix and Potassium and that seemed to do the trick for Ella’s body. She peed like crazy throughout the day and is even or a little negative this evening. That is a good way to go into the night.

We tried using the valium less today too. One reason we were able: Ella did not wake until 11:30am and then we tried to hold off giving it until the afternoon. We knew that we needed a blood draw and wanted to give the valium 15 minutes prior to try and help the event not be as traumatic. Sure enough, it worked. Drawing the labs was still a challenge with Ella’s veins but with the valium on board, she did very well. We got the labs back and her potassium was 4.0 – which is great. And her inflammatory markers showed slightly elevated, but they expect to see this right after surgery. They did this extra test of the inflammatory markers because Ella was getting low grade fevers intermittently throughout the day and they wanted to make sure that they were not missing something.

Overall, Ella had a good day. Although I think because we used less pain killers, she seemed a bit more fussy at times. In fact, she was still dealing with intermittent bouts of pain which appear to be GI related. Fast acting, sharp, cramping pains where she draws her knees to her chest. It seems like her bowels might be trying to move things through, but it is causing pain. So throughout the day, we were doing our best to console her when nurses or doctors walked in the room or she was experiencing pain. Unfortunately, she passed out a total of 4 times. Once at 1:30am before she went to bed and 3 different times throughout the day.

Since Ella has not passed gas or had a bowel movement, there is going to be discussion on rounds tomorrow of being a bit more aggressive to see if they can jump start her system. Ella has not had any food since last Tuesday and so they really want to start giving her food for nutrients, but they won’t do that unless she passes gas or has a bowel movement.

We still have the foley catheter in place although I will likely be requesting that it be removed tomorrow. During the times when Ella was feeling well, she decided that she wanted to try sitting up. It was a little challenging for her at first, but she would push through the pain and once was in an upright position, liked staying there. One time this afternoon, she seemed to not be moving so we took advantage and gave her a sponge bath. I really want the foley catheter out because I can tell that she is starting to become more active and wants to move around. Also, there were times today that I think she wanted me to pick her up and console her. It makes it tough to do that when it’s still in place.

We still have challenges ahead, but overall Ella is making great progress. Thank you so much for all the support and prayers.

Lamentations 3:25 (NIV)
The LORD is good to those whose hope is in Him,
to the one who seeks Him