Today was a long day and another tough one for me, emotionally. What's not tough about watching your sick baby in serious condition? There were some ups and downs and some moments of real sadness, but I'm trying hard to not be discouraged and to remain hopeful and optimistic because I believe that is what is best for Clara and also what is best for me. So I'm not going to detail all the medical stuff from the day. I'll just share some of the good things that happened and then a few things for you to continue to pray for in the hours and days ahead.
Things we're thankful for:
- They made some adjustments on her ventilator and have increased tidal volumes so that the nitric oxide is getting to her lungs better now. Hopefully it will do its job!
- They changed her entire ECMO circuit today, so she's got all fresh tubes and blood and oxygenator. It's like getting your car serviced. Brand spankin' new.
- The BIG goal for today was diuresis (pulling off some fluids). After consulting with the cardiologists they feel that the best way to treat her pulmonary hypertension (better than drugs or anything else) is to get her lungs to open up. They won't open up while they're soaking wet with fluid, so pulling that fluid off was the top priority. They're taking it slowly because she seems very sensitive to Lasix, the drug that does this. (Remember when she got "too dry" before surgery on the Lasix?) She had good urine output today and it looks like diuresing is going well, so far.
- By the end of the day today, her blood gases were looking like they're moving in the right direction.
- We started milk today! Just a wee bit, but we're excited that she's finally getting some of the good stuff!
- Her urine was very bloody this morning and we were concerned for awhile that it might be infection or renal-related, but it's clearing up a lot after changing the circuit, so we think maybe it was just the ECMO pump and not Clara!
Things to pray for:
- Continuing to get fluid off so those lungs can open up. Yesterday, I mentioned that we felt like this was a dog chasing its tail. Well, yesterday we were focusing on the PPHN (Pulmonary Hypertension) with drugs, but today we're going at it by a different angle - pull that fluid off so that the lungs can just do their job. Yesterday's philosophy didn't seem very successful, so pray that today's is! Get the fluid down, the lungs open up, the PPHN goes away and everything starts improving from there.... that's what we want to see! Pray that Clara will tolerate the diuresing and most of all that the PPHN will resolve!
- Today's echocardiogram showed some right heart dysfunction/failure. The right side of her heart is under a lot of strain due to the PPHN and it's causing damage to the right ventricle. We've started her on a new drug for this too, hoping to keep any further damage from happening (or slow it down) until we can get the PPHN under control. Pray that her heart will be protected!
This afternoon I was reading to Clara from the book of Bible stories that my mom and dad gave her on the day she was born. We read the story of David and Goliath (1 Samuel 17). I told Clara that I believed she could be like David. She may be small, and there may be some people who don't believe in her, but she is brave and courageous and I know she can be a fighter. I told her that her "Goliath" was this pulmonary hypertension and I want for her to load her slingshot and knock it down. I want for all of us to believe that God is on our side and that this battle is His. Let's allow Him to work through the medical staff and drugs and treatments to take down this giant.
"All those gathered here will know that it is not by sword or spear [or medicine or doctors' power] that the LORD saves; for the battle is the LORD’s, and he will give all of you into our hands." 1 Samuel 17:47
We are thankful for so much and continue to seek hope, faith and endurance for the road ahead. Discouragement comes easily, but we are striving to stay grounded in what we know is Truth - God is in control of this battle. He's the one who can take down Goliath. We'll watch and wait.