Part One: https://www.cougarboard.com/board/message.html?id=26207094

Part Two: https://www.cougarboard.com/board/message.html?id=26213437

Part Three: https://www.cougarboard.com/board/message.html?id=26218593

Part Four: https://www.cougarboard.com/board/message.html?id=26228386

Part Five: https://www.cougarboard.com/board/message.html?id=26234374

Part Six: https://www.cougarboard.com/board/message.html?id=26241845

It’s the middle of 2017 and now we had a three-year-old with a mechanical heart valve, a donor valve, and who required blood thinners and regular monitoring to ensure her INR is within range.

Here’s the funny thing about INR - lots of things can impact how quickly your blood clots. To make matters worse, Warfarin is a volatile drug. Lots of things can impact its effectiveness, either diminishing it or enhancing it. Things like diet, temperature, other medications (ibuprofen + Warfarin is a no-no), or if your child gets sick.

Managing INR is problematic and complicated, It requires a lot of vigilance and regular testing. If your child’s INR is too low, you run the risk of a blood clot. If her INR gets too high, you run the risk of an uncontrolled bleed. Yippee!

We’ve dealt with both. And with accidentally skipping a dose or giving the wrong dose (whoops!). And with our youngest child stealing and eating a dose (quick call to poison control).

I told you that replacing valves was not ideal.

The process of managing our daughter’s INR involved regular trips to a nearby hospital with a lab for a blood draw. The frequency of these trips was largely determined by test results. If she was in range, we went longer between blood draws. If she was not in range, my wife consulted with the Coumadin nurses from PCH and adjusted the dose. We’d then take her in for a blood draw the following week to see the impact of the dosing adjustments.

A quick note about the Coumadin nurses: they are an amazing team of nurses who manage the anticoagulant care of all the kids who have been treated at PCH who need blood thinners. This is provided as a free service and it is, literally, life saving. The nurses don’t get enough credit. In our family, they are rock stars.

With this routine, our sweet little girl got lots and lots of pokes. She was more often than not a good sport about this, but what little kid loves getting a needle stuck in their arm?

I believe it was sometime in 2017 or maybe early 2018 when our daughter started displaying a rather alarming symptom whenever she got sick — she started vomiting...and vomiting...and vomiting. It would happen every 10-20 minutes except when sleeping. Even if she had nothing left in her stomach to vomit, up would come mucus and bile.

And eventually, blood.

You might think you’d easily recognize blood in vomit, but at least in our daughter’s case, it didn’t appear red in color. It looked like flecks of old rust. It was dark brown.

An entire year would pass with great results from follow-up visits and echos. The donor and mechanical valves were doing well. We finally seemed to be settling into greater stability. FINALLY!!!!

We were tired of taking our daughter to the hospital for blood draws, so my wife did some research and found a home INR test kit. A bonus was that this home test required a finger poke and only a drop or two of blood, much more palatable for our daughter than a blood draw at a lab. What we didn’t know at the time was that the machine we got wasn’t terribly accurate. My wife was diligent with home testing. She would also on occasion do a home test and then take our daughter to get a blood draw and compare the results to help “calibrate” our home machine. She would then work with the Coumadin nurses to figure out the dosing protocol.

While we didn’t have any surgeries or other major emergencies for that year, our daughter’s INR was erratic, so getting the dosing right was a stressful challenge. I’m sure I don’t know half of what my wife was feeling and managing.

In July 2018, our daughter caught a bug and started her weird vomiting routine. After a few days, my wife did a home INR test and got an error message. Apparently, our daughter’s INR was too high for the machine to measure. Alarmed, my wife took our sick little girl to the nearby hospital for a blood draw.

When the lab draws the blood and runs the INR test, the results are forwarded to the Coumadin nurses at PCH, who then call my wife to tell her the results and talk about any dosing changes.

The Coumadin nurse got the results of this latest test and called my wife in a panic. Our daughter’s INR was too high to measure. She had effectively lost the ability to clot. We were told to take her to the ER at PCH. Right freaking now.

OK then.

As a reminder, our daughter’s INR range was supposed to be between 2.5 - 3.5. The higher the number, the longer it takes for the blood to clot. She was measuring at over 11. She was in danger of an internal hemorrhage.

The team at PCH treated our daughter with vitamin K, which is a key element used in several of the body’s mechanisms to clot blood. The only problem with this approach is that vitamin K lasts in the body for a long time and it swung the scales so that now our daughter’s INR was too low. This was addressed by administering a different anticoagulant, Lovenox.

We were discharged after a few days with a prescription for Lovenox. A medical delivery service arrived at our home with a month’s worth of pre-loaded Lovenox syringes. We’d be giving our daughter shots every day for a while (until the extra vitamin K left her system). We learned that if we iced the area on her leg before we gave her the shot that it would reduce the pain and the bruising. Kids on blood thinners bruise easily and a lot (in fact, I’m surprised someone hasn’t called Child Protection Services on us given how often our daughter is running around with legs and arms covered in bruises).

Frustrated with constantly adjusting our daughter’s dosing (and the higher-than-ideal frequency of testing required to monitor each adjustment), my wife found a different machine to use for home testing. She was convinced the machine we had was too volatile and ultimately inaccurate. And she was right. Turns out that an entire batch of their testing strips was recalled because of accuracy issues.

That made us angry. How on earth can you provide a crappy machine that people are using to make dosing decisions?

Thankfully, once we made the switch to the new machine, our daughter’s INR has been significantly more stable. This means she needs less frequent testing and much less futzing with the dosing protocol..

We watch her closely now when she gets sick and test her for any INR issues so we can catch them early before they become severe.

This is why I took my daughter to the ER at Primary Children’s Hospital a few weeks ago (which I posted about here: https://www.cougarboard.com/board/message.html?id=26180368). She got sick and did her vomiting thing which started showing significant amounts of blood. Her INR home test came in at 6.8 (anything above 4.9 is considered severe). That and her fever that kept coming and going were enough to send us to the ER on a Saturday night.

It’s been a wild ride, to say the least. And the ride will get even wilder when she outgrows the donor and mechanical valves that are now 4 years old. She’s much larger now than she was 4 years ago. We don’t know when she will start showing signs that the valves are too small, but I can’t imagine it will be too much longer.

Our daughter’s next cardiac exam (including an echo) is in August. We will know more then.

I think I’ll take some time to put together a final post (Part 8) regarding some of the things I’ve learned through this...adventure...and then call it good for now.

Thanks for reading.

NYC