Ella did better last night.

She was still up a lot of the night, but it seemed like it was due to retching on her own secretions. Thankfully, it was not due to food. She had a continuous feed of Alimentum 20 calorie from 11pm – 2am. They stopped the food at 2am because they scheduled to have her thyroid and adrenal glands tested for hormone levels. One of the pulmonologists on the team thought that if her hormone levels were out of whack in any way, maybe it could be a contributing factor to her higher heart rate.

Speaking of heart rate, the increase in sildenafil has seemed to cushion her high heart rate. It is still higher than her baseline heart rate but not quite as high as a few days ago. Also, her own secretions have been worse the past few days. We are not sure if she is more wet or another possibility: sildenafil can cause phlegm production and that medicine has been increased for a few days too.

The Care Conference went well this afternoon. After discussing everything, this is our new plan of action. We are interested in the procedure that Dr. Fagan discussed last week about opening up her SVC. However, we decided that we want to hold off for right now. We want to try and maximize the use of her medicines; we are trying to achieve just the right balance. And everyone agrees that we have made progress and we are close. If we go through another major procedure, it is going to put us back significantly. On the other hand, if we try to get the perfect balance with meds and are unable to get the results we need, then we might have to proceed with the procedure.

We also decided to leave her sildenafil at the current dose, although we can increase it if we think it will be beneficial. Instead, we decided to increase the captopril to 1.25mg per kilo, three times per day. If you remember, we are convinced that the captopril was a huge factor in her increased heart rate. Since we experienced slightly lower heart rates over the past few days, we are going to increase the captopril. The captopril works in symphony with the sildenafil for effectiveness but also works together with diuretics to increase the effects. We will just need to watch her heart rate and blood pressures to make sure it is a therapeutic dose and works well with the other combination of meds.

And even though captopril has caused a high heart rate, we know it has benefited Ella a lot. Her BUN was 9 this morning. In the past, she would have been experiencing major pulmonary edema and respiratory distress. And for most of the day, she behaved more like herself. She was smiley a lot of the time.

Another factor is assessing her fluid status: they took another chest xray late this afternoon. Surprisingly, it looked the same or maybe even slightly better. Yet she has not had any Bumex or other loop diuretics (e.g. Lasix) since last Sunday. Instead, we increased the Aldaztazide to 1mg/kilo, three times per day. It is a blessing that we have not touched the Bumex for 3 days. We are trying our best to not use it. We realize that we still might have to, but if it is going to be part of Ella’s regimen, maybe it will be the type of med that is only used when we sense that she is fluid overloaded.

Ella has been having lots of food issues. She is not even able to tolerate Alimentum 26 calorie like she was before the nissen surgery 4 weeks ago. At the Care Conference, we decided to try a new formula (sounds like “Aloe-sure”). She is on a continuous feed right now and has been tolerating it.

Everyone at the Care Conference agreed that we simply want to get her meds and clinical signs down to a science whereby we can discuss via phone and titrate the meds, if needed. Yippee – they want to help us get home!

By the end of the day, we did find out that Ella might be having a problem creating enough cortisol (adrenal gland). The normal cortisol range is 5-25 ug/dl. She is at 0.62. The most likely cause: she took prednisolone which is a steroid; steroids can suppress the body’s natural ability to manufacture cortisol even for a time after taking them. The treatment requires an IV line plus a separate poke all within a few minutes. We did not take any action tonight. Yuck, not looking forward to that part.

We will see what the next few days brings as we tweak meds more. I’m hoping that we get closer to the optimum regimen for the Bun.

Also, I’m literally falling asleep as I type this, so I am going to crawl into bed and hope that Ella sleeps tonight!