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Louis

Louis DeWitt Ribbens Update Page

Latest journal entry

April 13, 2017

I wanted to wait until Louis had his follow-up with his cardiology team before I updated his page in detail. What a long three month wait it has been! At first, I kept thinking, "Gosh, I can't wait three months. I need to know how his heart is healing RIGHT AWAY." But the more time we spent outside of the hospital, doing family things in our own home, I began to dread the cardiology visit. It felt like we had hit the reset button and now things were going how they were "supposed" to be going...normal, even. I was afraid of all the unknown, the complications you can't predict when it comes to Congenital Heart Disease.

Louis had his routine 6 month check up with his pediatrician where they noticed a hydronephrosis diagnosis had gone several months without any follow-up. I had to google it. Hydronephrosis is basic swelling of the kidneys. Louis had a kidney ultrasound when he was just a few days old and it was explained to us that it's pretty normal for the kidneys to be working a bit of overtime given his abnormal heart anatomy. So no big deal, especially in the grand scheme of things, while awaiting his corrective heart surgery.

Fast forward, the pediatrician orders a follow-up ultrasound to be sure his kidney function has returned to normal, just to check it off the To-Do List. We soon learned that Louis has several kidney stones in both kidneys and some thickening tissue in his ureters (the duct that passes urine from the kidney to the bladder). More googling. Generally speaking, kidney stones are most commonly genetic and/or diet related. In Louis' case, it is neither. More invasive testing, which though interesting was pretty stressful and seemingly inconclusive. Louis had a procedure called a VCUG or a Voiding Cystourethrogram; this injects dye through a catheter to fill the bladder and check for any abnormalities. We were looking to see that there was no re-flux of fluid from the bladder back in to the kidney, and there wasn't. Louis' urinary tract anatomy is normal. 

(Is he going to read this as a teenager and be peeved at me for putting his urinary tract anatomy on the internet? At least there aren't any photos? Although x-rays are always cool and with Louis' you can see his pacemaker and the wires attached to his heart so, DOUBLE cool.) 

We spoke with a nephrologist (a kidney specialist) and we have concluded that Louis' kidney stones are a result of his lengthy hospital stay. During his time in the PICU, he was heavily sedated and to monitor his in/out take of fluids he was also on a diuretic called Lasix. Lasix helps to move the fluid in your tissues and blood so a person who is sedated doesn't remain bloated. It was especially important for Louis because his heart did not need to be handling extra fluid as it was already working so hard. Lasix often leaves behind some calcium, creating kidney stones. His kidney stones are 1-2mm in size. They do not seem to bother him, nor is he passing them. Sometimes in infants, kidney stones just do nothing. They just hang out in the kidney and sort of go away as the child grows. We will hurry up and wait, and continue to check in with his nephrologist every other month. If things stay the same, we will continue this course of nothing. If he shows signs that there's more thickening tissue or the kidney stones are growing in quantity or size, then there will be intervention. I do not know what type of interventions would be used on a baby. I will cross that bridge if/when we get to it. 

Louis' cardiologist had nothing much to say, which is great. We are weening from one heart medication, and raising the dose of another heart medication. We will spend the next few months playing with the right dosage to find a balance that works for Louis. Louis' pacemaker is still doing it's job. I'll recap a little; He is in complete heart block which means the top part of his heart is not talking to the bottom part. His atrium is pumping blood to the ventricles but it takes several pumps to fill the ventricles. In a normal heart, it's a 1:1 ratio where your atrium pumps once and your ventricle fills once, every time. It is still unclear if his heart will recover or if there's a lifelong need for a pacemaker. We must give it more time.

Because Louis has his coronary crisis that led us to emergent heart surgery, his doctor would like to schedule an exploratory heart catheter sometime in late summer. He has had a few heart caths before. The surgeon goes through a main artery in his groin/thigh, and snakes a camera up to his heart to get a look at the muscle and veins. We want to make sure everything is working properly and this is the only way to see his coronary arteries clearly. Usually, they would wait for the heart patient to show signs that something isn't working properly, but for Louis it is too dangerous to wait for such a thing. The heart cath seems like the best option for us because if there is a problem, they would be able to resolve it right away, since it's a sedated procedure and they would be in an operating room. 

 

Louis is so sweet. He is gaining weight, trying new foods, growing stronger, and exploring his surroundings everyday. He is patient, and curious. He loves when we surprise him, and he loves to give kisses. It's so hard no to worry, because I don't know what I don't know. This is life-long care for heart defects. We are learning together. I still have days where I am brought to my knees in awe of all Louis has sustained and survived and then I am beside myself when he falls asleep in my arms, or he smiles at me, or I catch him doing something new for the first time and he is thriving. 

We are humbled everyday. We spend everyday in love, and in gratitude, and in awe of our sweet baby Louis. Here's to knowing more strength in the passed 7 months, than I have ever known in my 30 years.