Ella had a fever last night, but it finally broke early this morning. As her mom, I stayed up pretty much all night to oversee the management of her care. Right off the top, I will say that we have been impressed with the staff at CHOC. They are doing a good job of taking their expertise and listening to us as her parents that know Ella, to come up with a plan.

Last night was the first night post surgery with the night crew and people that don’t have Ella experience. We did our best to warn them about her sensitivity to fluids and that they may want to consider giving diuretic in the OR or shortly thereafter to maintain her fluid status. The surgical team is worried and does not want to give diuretic because they need to make sure that her intravascular system is not too dry. Yet, we know that if you go too long and let her get too wet, you will have lots of other issues to deal with besides her surgery recovery.

It has only been about 20 hours since surgery and they have started to learn to listen to her parents and the Denver docs input. Overnight, the docs were a bit too aggressive in trying to wean her and give her fluids. I was suspect, but wanted to let them get a feel for her and her responses. I did put my foot down when the overnight doc wanted to cease her nitric oxide. Since we were admitted, they stopped giving her sildenafil which she normally takes to control her pulmonary hypertension (they didn’t want to put anything in her guts and sildenafil is not available via IV). So, they opted to manage her pulmonary hypertension with the nitric oxide. Last night, the doc wanted to cease the nitric oxide because “she looked good”. I was adamant and won that battle.

Her urine output has been low. This is not surprising because she usually requires diuretic every day to keep her dry. At this point, they had not given her any diuretic. Like they would treat a normal case, they suspected that she was not peeing because she was too dry. I highly doubted that she was too dry, but wanted to give them the freedom to manage her. So, they gave her two boluses of fluid to try and encourage urine output. As I expected, no true urine output. After advocating, they gave a half dose of lasix via IV (which Ella usually likes), and she gave out 300ccs of urine! This was before they took another chest xray. Then at 5:30am, they took another chest xray. Josh and I both took a look along with the docs – I think it worried them a bit. She is very wet.

This was their first introduction to Ella and her fluid sensitivities. I called her pulmonologist in Denver, who is amazing and always makes himself available, and he gave his cell phone so that the docs at CHOC could consult with him on her fluid sensitivity and the best plan for management if needed. But before I gave them the number, the new doc in charge for the day in the PICU was already putting the pieces together which was impressive. She increased her nitric oxide, increased the ventilator settings (which had been weaned with the overnight crew), increased orders for sedation, and ordered a full dose of diuretic once every 6 hours. She mentioned a lasix IV drip. We explained that Ella tends to respond to bolus lasix better (hitting her kidneys all at once in short boluses versus a drip gives more urine output). She took in our input and changed the order which is so appreciated.

The head of cardilogy came by for a visit. He has been incredibly valuable in managing the heart and lung issues pre-surgery, surgery and post-surgery. He is the one that decided to give her nitric oxide for her pulmonary hypertension, after consulting Ella’s Denver docs. This morning, he also added Milrinone, which is a medicine that they give a lot of times to kids with a weakened heart. It will simply supplement the nitric oxide and help her heart and lungs function together. Ella has not been on this before (to our knowledge), so it will be interesting to see her response.

They consulted hematology because they want to make sure that her blood clots enough for her new abdominal scar to heal but not so much that it impacts her SVC from clotting off. So, they noted from her earlier labs that her AT3 (Antithrombin 3) count was low. This is a protein in everyone’s blood that naturally helps with clotting. Hers was 116 before surgery. This morning, it was in the 60s. They want to see it maintain 100+ throughout today, so they gave her a dose and will monitor with labs. Tomorrow, the surgical team has given the “ok” to start Ella back on a heparin drip to make sure that the SVC is not impacted.

The surgeon did come by and confirm that yesterday went very well, but her intestines were so tense and dilated, it would not have been too much time before they burst. Initially, we were just told that they would not burst but that the tissue would just die. She reiterated that her intestines would have burst which would have been deadly for Ella. Wow, how the Lord takes care of and protects this little girl…it is truly amazing.

Today’s goal is a day of rest for Ella and reducing the amount of fluid in her lungs while her abdominal scar heals. Thanks for all the love and support.

p.s. As a side note (for those of you that don’t know), when we post an update for the first time each day, you will receive an email. But as we update throughout each day, you will not receive another email. So, you’ll need to just check back every so often to see if there has been another update.

Proverbs 3:5-6 (NIV)
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will make your paths straight.