Ella slept a bit better last night. She did not start her retching until 4:30am. By 6am, I was up with her.

It was tougher to sleep in the ICU because it isn’t totally dark. But it is nice to have such close monitoring of Ella; the nurse is literally behind the glass watching her the whole night. This did make it a bit easier to disconnect and focus on trying to sleep.

By mid-morning, Ella’s color was not great. Her heart rate was between 175-190 while she was just laying in her crib. She was breathing fast at 78 breaths per minute. Her secretions seemed to be increased slightly over yesterday. Everything just felt like she was too wet. Maybe not a ton, but enough to cause us concern.

We called in the nurses and then the docs to assess her and told them about our concerns. They agreed and decided to chase her fluid with a dose of Bumex. Within 2 hours, she peed 340 grams of urine. That is a significant amount. It sure seems like whatever amount of diuretic that she has been on in the past few days is not enough to sustain her.

After the Bumex, it seemed like Ella became herself. She was smiling and laughing. Clinically, her color looked better. We’re hoping that we can figure out why she is so fluid sensitive. The procedure tomorrow should provide some answers.

On that note, we have been confirmed for 11am for the procedure. The heart catheter procedure is invasive. For that reason, we are not excited about it. But we are hopeful that it will provide more answers.

When they did the echo 3 weeks ago, they saw a borderline case for left ventricle dysfunction. Their theory is that her left ventricle is small, narrow and stiff; it doesn’t pump blood as effective as it should. This is what Captopril helps correct. That seemed fine except once the Captopril was on board and they started to decrease the diuretics, her heart rate became fast. In the past, she only had a high heart rate if she was fluid overloaded.

Ella has been on sildenafil for months (opens the vessels and allows for more oxygenation) and although not common, they wondered if the sildenafil interacting with the Captopril was causing the high heart rate. So when they weaned her sildenafil over this last weekend, then her saturations started to suffer and she needed more oxygen. Rather than just increase the sildenafil back, they had an echocardiogram done.

The echocardiogram made the doctors nervous – that is why we’re in the PICU. It showed that along with her left ventricle issue, that there is evidence of tricuspid regurgitation. This means that some blood leaks backward into the right atrium, increasing the volume of blood there and resulting in less blood being pumped through the heart and to the body.

When I did some research online, I noted in a forum that one doctor told a patient that the best way to manage tricuspid regurgitation is with diuretics. This makes me wonder. Has Ella always had tricuspid regurgitation but with the massive amounts of diuretics, it was being masked or managed? I still think that sildenafil makes a huge difference for her. But the echo the other day is also the first one where she has not been on massive amounts of diuretics.

One thing is for sure: her dose of massive diuretics started to not be effective any more. That is why we came to the hospital in the first place. But, it does seem like a lot of variables including her meds have changed over the past few weeks. And when she has had a high heart rate these past few weeks, we have not heard the possibility that maybe she needs more diuretic. Food for thought…

To prepare for the heart catheter procedure tomorrow, they did an ultrasound to look for access points. They decided that her right leg looked optimal. Ella does not have a great history with access points. We’re just praying that the procedure goes smoothly with no complications.

Lord Jesus, please protect our baby girl. As she prepares for this procedure, please wrap her in your love. We know that you will be with all the doctors. We pray for wisdom and discernment. Lord, our desire is that they would learn about Ella and her anatomy so well that this knowledge would give us huge strides in her care. We praise you and thank you for where you’ve brought us and for where you are taking us as each day passes. We trust in your plan for Ella. May we continue to seek you through the highs and the lows. In Jesus’ Name, Amen.