Ella has been a bit fussy on and off, likely teething. Last night, she still woke up several times coughing and requiring something to drink.

It has been tough for the last several months to not get sleep each night. Honestly, I always thought that it was temporary, that we would get past it. But she has been this way for months, week after week. It is tough to deal with many life situations without sleep.

I’ve been praying all week about the next steps for Ella…

If you look back to why Ella has a fluid issue, it all started when Dr. Kays removed her ECMO cannulas. It caused her Superior Vena Cava (SVC) to collapse and completely occlude, resulting in SVC Syndrome. They tried ballooning the vein right after it occurred, but the procedure was not successful. The chylothorax (build up of lymphatic fluid around the lung) was most likely a complication of the SVC syndrome. When major blood vessels near the heart have blood clots, it can also restrict the flow of lymphatic fluid because much of the lymphatic fluid eventually drains into the large blood vessels. The backup of lymphatic fluid then causes chylothorax.

So we spent weeks and weeks in the NICU trying to resolve the chylothorax. Eventually with time, Ella’s body compensated by building a network of collateral veins to carry the lymphatic fluid throughout her body. When Ella went to the heart catheter lab at the Children’s Hospital in Denver last October, they verified that her SVC is completely occluded and noted the network of veins that she has developed. If you look at Ella’s chest, you can see the freeway of veins running around. And although her body has compensated, it is not an efficient system. This is why she still requires so much diuretic to minimize her fluids.

Trying to open her SVC was an option presented to us back in October, but after lots of thought and prayer, we opted to hold off. Along with Dr. Abman (her pulmonologist), we learned that her left ventricle is more narrow and that Captopril is an effective medicine for Ella’s heart. Captopril helps to make diuretics more effective, so we were able to switch to Aldactazide, which is a thiazide-diuretic versus Bumex which is a loop diuretic. This was an important discovery because the loop diuretics were causing damage to her kidneys. Loop diuretics also carry a higher incidence of hearing loss.

When we left the hospital in October, we were hopeful that Captopril and Aldaztazide would be the combo that would keep her fluid issues in check. We wanted to try to manage her fluids with medicines and not take unnecessary risk with another procedure.

Over the past few months, we’ve discovered that these 2 medicines together are not the perfect combo – she still needs Bumex to stay dry. Thankfully, she no longer requires mega doses of Bumex every day, but just a strong dose once every 2 weeks. Just this past week, we started to require a higher dosage of Bumex plus in a shorter time frame than 2 weeks. Also, the effect of Bumex has diminished – it used to put her in a good place fairly quickly. Yet, she had a larger dose the past few days and we still had to take her to the ER because she was requiring 2 liters of oxygen!

At this point, none of the doctors have a good, long term solution. All of them are hopeful that she will simply out grow the fluid issue. As I have been seeking God and His will this week, I am feeling prompted that maybe Ella needs to have the procedure done to see if they can open up her SVC.

As I was researching this morning, I found an excellent article on SVC syndrome that was published by the University of Boston. It highlighted that as ECMO and other methods of saving babies are becoming more common, they are seeing more SVC syndrome in the pediatric population. Approximately, 10% of all ECMO babies get some form of SVC syndrome (either partial occlusion or complete occlusion of the vein). They recommend ballooning the vein or if not successful, then placing a stent. The outcomes have been favorable with no morbidity associated. The only downside is that re-intervention is highest in those that have this procedure done under 5 years of age.

The past months have been so hard emotionally. We have several issues with Ella that do not seem to be improving much. The fluid issue is one. Another concern we are praying about is a follow-up GI study. Ella is retching just as hard and frequently as when she re-herniated and needed surgery last summer. It has been 4 months since surgery and it has not improved. Retching has to be one of the worst things to watch your child endure, multiple times per day.

As we contact surgeons and specialists this week, please join us in praying for the best choices for Ella to be made evident. We certainly do not want to have her undergo any unnecessary procedures, but are feeling prompted that we need to try something else to see if we can improve her health situation.

Galatians 5:25 (NLT)
Since we are living by the Spirit, let us follow the Spirit’s leading in every part of our lives.