Yesterday, after Poppy’s quiet night in the ICU the EEG preliminary results told us that there were no active seizures occurring during the EEG. She was really starting to perk up, and I was really thinking they would send us home, as they had exhausted every test that could be done in MT and she looked so good.
However, I should know better, I should know Poppy better than to ‘plan’ on going home. It turned out that one of her lab results became concerning enough for her pediatrician to feel it was in her best interest to be transported to Seattle Children’s.
This lab test is a test that the Transplant team monitors every month, as it can be a decent indicator for heart failure. It’s called a BNP. There are two different ways to run this lab. There is an ‘actual’ BNP (which is how Seattle Children’s runs it), or a proBNP (which is how MT runs it). When we are in Seattle for labs, her ‘actual’ BNP is always phenomenal, ranging from 50-80-really good for someone with a heart transplant. When we do labs in Bozeman, her proBNP is usually in the 300s. Still good, but the problem is, you can’t compare an actual BNP to a proBNP, as they are run differently. You can obviously compare an actual to actual and pro to pro.
So…all that being said. Poppy’s typical proBNP in Bozeman on a monthly basis is in the 300s and that is acceptable. The other morning in the ER in Bozeman, it was 900. Yesterday morning in the ICU in Bozeman it was 2064!! This was alarming to everyone. Dr. Daniels decided it was best for her to be transported to Seattle to be throughly checked out by the specialty teams who know her best.
As shocked as I was to hear about this lab result, they had prepared us for this possibility of being shipped out the day we took her to the ER. Poppy has never had a life flight before. Before she was even born, all the doctors told us to just accept that it would happen at some point, it’s just the way of how things go when you’ve got a complex medical history and you live in a state with no children’s hospital. We’ve been incredibly blessed and fortunate to have avoided one this far. And the fact that she is stable made it a whole lot less stressful than it could have been.
We arrived Seattle around 7:00pm Seattle time. The life flight guys were great. What a blessing they are. Poppy then proceeded to get poked and prodded again. Sooo hard to watch 😞 after such a long day, but I mean, that’s why we are here, right? – to figure out what happened the other morning and be sure it isn’t heart related somehow.
She got fresh labs, nasal swab (she’s got a cold), and EKG. She will get an echo today to look at her heart. We just have to be patient and see what they say at rounds.
Can I just say my sweet girl is such a trooper. I mean, she is so brave and so strong. She obviously gets upset when she has to get poked, but she’s smiling 5 minutes later. She is totally covered in grace and it’s obvious. Life is not easy for her. There are so many times I find myself pleading…please Lord, can she just have one thing that comes easy to her? Please? Just one thing? 😩 It’s so easy for me to watch how she struggles and just hurt for her. But when I take a step back and look at what does come easy to her, she smiles. There was a long time when she was very sick with shunt revision after shunt revision where she had no expression. But now her smile comes so easy and so often for her. It is truly a gift- the thing that comes easy to her, is something we take for granted and definitely don’t do enough of in our world. Her smile is pure joy, in the midst of the challenges in her life, she has pure honest joy. She works so hard to do everything and she’s joyous. God’s grace overwhelms her. How convicting…how inspiring to be her momma. Humbling.
And Crosby…he is amazing. He is such a sweet servant hearted boy. He is such a sweetheart and a giver. He is exceptional when it comes to constantly having his routine shift when these things happen. But he’s social and happy to be a helper, he is such a blessing. God continues to teach me so much through my kids. It’s so cool ❤️ It’s truly an honor to be their momma.
Brad and Crosby are on their way out today, and we can’t wait to see them!! When you’ve had the luxury of not being admitted for a long stretch, it really hits hard when stuff like this happens. We miss our boys 😞 Praying for safe travels. Praying for answers and explanations. Thank you all so much for keeping us in your prayers ❤️ The outpouring of love and prayers truly means so much to us. ❤️