Today was the tipping point where Ella started to do a bit worse clinically. Fortunately, the doctors took note too.

This means that the increase in Bumex to 1.5mg twice per day, is not doing the trick to keep her dry. Her BUN yesterday was 19; it has not gotten better. And if anything, she sounds more wet today.

It started with 2:30am wake up call. Ella was having so many secretions that it was tough for her to breathe. Finally after suctioning her, she was able to go back to sleep. The trend continued the entire day where she required suctioning multiple times. Each time was a major episode where she desaturated and required blow by oxygen. She HATES being suctioned and literally turns her purple-blue color.

She was coughing a lot too and you could just hear her congestion and overall challenge with breathing. It was a tough day for me and Josh. It is so hard to watch her be miserable and not be able to do anything to help her. When you are around it constantly, it starts to wear on your emotions.

The plan today was to give her an increase in diuretics. I proposed giving an extra dose of Bumex. But we found out that she is already at the max dosage for her weight. She doesn’t have an IV right now, so we can’t give IV Lasix. The pulmonologist, Dr. Wagner suggested an oral dose of Lasix. As we have explained to multiple professionals at the hospital, Ella does not tend to respond to Lasix given orally.

For those of you that have followed our story for months, Dr. Kays had a tough time transitioning her from IV Lasix to oral Lasix back in the NICU. It was one of the mysteries that kept her in the NICU. Her body never responded the way we needed it to when administering Lasix orally. Since Bumex is also a loop diuretic and is 40x stronger than Lasix, we switched and started giving her that one. And once we left the NICU, we had to go back to the hospital 4 days later since we didn’t even have the perfect dosage of Bumex. This is a classic issue for Ella and the dosage can change as she grows, gains weight and her volume of fluid/food changes. It is a constant balancing act.

In any case, Dr. Wagner stated that the reason Lasix orally did not work for Ella is because likely it was underdosed. Most commonly, hospitals or doctors will double the dose. Apparently, even doubling the dose does not have the same impact as IV Lasix. The true conversion is 7x, but he admitted most medical professionals are not comfortable increasing it that much because it sounds like it is too much. In that vein, he recommended giving her a 4x concentration amount. Although we had this sense that it would likely not work, we conceded. There are times when we can tell them something about Ella that we believe to be true. The reality: we might be incorrect or as long as it is not harmful to Ella, it is better to let them try and learn by their own experience rather than parents trying to convince medical professionals of a truth about our baby girl.

Finally, it was 3pm and we had not heard anything about receiving the dose of oral Lasix. Keep in mind that we have had multiple episodes with Ella today and she is having a tough time. So the sooner we can get the oral Lasix experiment started, the better she might feel. She always responds better when she dries out.

When we went to inquire, we learned that they wanted to give her the 4x concentration of oral Lasix, but wanted to space it out into two doses. This is where we decided to put on foot down on the issue. Our prior experience has shown that Ella does better with a blast of diuretic, a strong dose. This is one of the reasons that IV Lasix probably works well. It sends the message loud and clear to her kidneys to clear out.

After talking it over, we convinced them to at least try and place the 4x concentration into one dose and not 2 doses spread out. Again, if we already have experience showing that 2x concentration is not enough, why do the exact same thing and not gain any ground? Ella is not feeling well and we need to take steps in the right direction. This is especially important over the next 2 days. The weekends are always tougher to get clear direction and decisions for care.

We tried the dose of oral Lasix on an empty stomach to help improve its effectiveness (again, based on what we already know with Ella), and she only peed a total of 135 between 4:20pm – 9pm. We had a feeling that it would not give us a huge jump. Her urine output is evidence of it. The only last chance of it being effective: does it give a boost to the effectiveness of Bumex? Not likely. If it turns out that it is not shown to make a huge difference, we’re hoping that they believe us from this point forward on the use of oral Lasix.

We have noticed that the steroids have helped when she is asleep. She will saturate 100 and have a heart rate of 115, which is definitely promising. I just wish that she was not still on 2 liters. And of course, as soon as she wakes up, she has all kinds of issues breathing.

The other reality: the doctors can’t differentiate her symptoms. It is tough to tell how much of this scenario is being caused by the hiatal hernia. They don’t feel that they will have an accurate picture until after surgery. Maybe this hiatal hernia is just causing more respiratory problems than we think.

We still think that regardless of the surgery, that she is too wet. Her symptoms line up with what we have seen multiple times. But time will tell the true story.

We are not sure what the plan of attack will be tomorrow. We are going to request that we no longer try oral Lasix. Since we have hit the maximum on Bumex, there is a different diuretic that they can try (tends to cause more electrolyte problems) or we can try for another IV and give more Lasix. Even though IV placement is horrible, I think we are leaning more towards that solution simply because we know it will work. It is scary to introduce another diuretic into the whole mix. The other reality: they could limit her intake of food for this time which they have not done up till now. It is not a perfect long term solution but in the short term, it could help dry her out in preparation for surgery and they could reassess post surgery.

Josh ran home to go into our crawl space and grab a blow up mattress. We’re not sure if they still work, but we have to try something different. Sleep the past four nights has been rough since they do not have a good set up for 2 parents to sleep in the room. We’re hopeful that one of the air mattresses will work, so we can catch some good sleep tonight. We need it badly!

Please pray that Ella will feel better (today was a rough day for her and her parents) and that the doctors will be given wisdom and insight to know the next best steps. Also, that we can catch much needed sleep tonight in our hospital room (all three of us). And as always, that we will continue to seek Him and His will for our lives. We’re not sure what He has planned or what all of this means, but we desire to trust Him and rest in the truth that His plan is always best.

Proverbs 16:20
Whoever gives heed to instruction prospers,
and blessed is he who trusts in the LORD.