Tomorrow is Jax echo and cardiology appointment. This appointment has my head pounding. This echo will tell if Jax pulmonary hypertension is still high. If not, then we go back to pulmonology and try to find out whats up with Jax lungs. If it is still PH, then we are probably talking about another trip to the cath lab, something I was hoping to avoid this year. One thing that has me a little worried is most people I know don't drop their sats when their pressures are higher, so I'm worried that this is just a progression of lung disease. Not helping matters, yesterday I pulled out Jax medical binder to update it. It hasn't been updated since his last hospital stay in February. When I opened it there was a bright blue paper in the front pocket.
A closer look reveals what it is.
This paper was given to my by the palliative care team in February. After every single medical personal asking me if Jax was a DNR, we decided this was something that needed to be discussed. We sat down with the PICU attending, the palliative care team (which consists of a doctor, nurse, an NP, and social worker) and me and Ray. I can't make any specific plans until a situation presents itself, and it was decided that we would still put full code. Meaning that if me and Ray are not there, CPR would continue until we could get there. I must have stuck this paper in his folder and forgot about it.
We know that Jax time on this earth is limited, that's why we live everyday to the fullest. I just hate being reminded of that time and time again. And his cardiologist is good at reminding me! Why do I stick with him you ask? Here's why... he specializes in PH, so even if I saw another cardiologist, they would send me back to him anyway. Plus all the cardiologists in this clinic have the same mindset and do the same things. So until we move, we live with it.
So fingers crossed for a good appointment tomorrow, and hopefully some answers, and a plan!
Jax playing with his doggy from his buddy Phoenix...ok, so Carter put the doggy in Jax arms, but we could pretend!
1 month ago
29 comments:
Good luck with the Cardiology appt. Love the cute dog in his arms and the swimming pics below.
My heart just breaks every time i read your posts. In situations like this it is so hard to see God's will and to know what to do. I hope and pray you and your husband are able to discern together. And I hope that although Jax can't show it, I hope he is happy.
Crossing our fingers!!
What time did you want to do bows Wednesday?
Good luck with Jax and Cardiology tomorrow. I will keep you guys in my prayers. I hope that you feel good about the appointment when you are done and know where to go from here.
I love the picture of Jax! He is sooo adorable!
Praying the appointment goes well tomorrow and that you get some answers and solutions.....but good and easy ones!
Love Jax hugging on his puppy dog! So cute! Hugs!!!
Aawww, look at Jax with the puppy! So cute. :)
I hope the appointment gives you some answers. It's almost always worse not knowing, and imagining the worst. I hope it's good news.
Praying for a great appt tomorrow and lots of answers to all your questions.
Love the puppy & Jax pics, too cute!
Oh Lacey...(((hugs))) Extra prayers for you tomorrow. I hope they have some good answers to help you understand how to best take care of Jax, you do an amazing job and are a fantastic mother!
lacey - thinking about you tomorrow and we said extra prayers for jaxson tonight. even when we are praying with the girls before bed if we "shorten" the prayers but just saying actual prayers and not naming people specifically anne remembers and prays for jaxson (you should hear how she says his name - it is very cute) let us know how it goes!!!
Oh my heart is with you... we too have had lots of conversations about the blue paper... so tender... good luck with your appointment!
Praying for you guys!!!
Good luck tomorrow. I hope it's a good appointment and not a waste of time.
I hate the DNR question. We get it every single time we go to the hospital. I look them straight in the eye and say "full code." I'm just not ready yet.
Prayers for a great appointment~ Jax is such a cutie! Love those chubby cheeks~
tears in my eyes, praying for you and jax, he is strong, you are amazing. praying you get good results.
Oh I am so hoping that the appointment goes well for you and you get some good news. That must be very difficult to have that paper and to hear it from the cardi. That was one of the first things pallative set up for my mom. It was a sore spot to have it brought up all the time...so we just stuck it in the binder. Hang in there and sending you hugs and prayers. Praying for some miracles.
good luck tomorrow, we will be praying that you here good news
Oh we will be praying for some good news at the appointment tomorrow. Thinking of you all!!
You have me nervous. I started to read halfway through for some reason, and thought that something horrible had happened. UGH! But I love the dog, and love that you two are friends. I had no idea!
Awwe jeesh Lacey. You had to do it didn't you. You had to make me cry.
Never met you. Never met Jaxson. But ... you both are in my heart. Give him kisses on his cute chubby cheeks from us here in Seattle. We are praying for you and for sweet Jax. Keep us posted on the appt.
Sending love and prayers for tomorrow.I'll check in later in the day.
I hope the appointment went better than expected, I am sure it must be over right now when I am writing this. Oh Lacey I can't imagine what it must feel like having to deal with decisions like DNR, unimaginably painful and my heart aches just reading your post. I pray you get some answers and solutions today at your appointment.
Anyway on to happier things, Jax looks absolutely adorable with that pup, o.k. so you put it in his arms but that doesn't take away any of the cuteness. Beautiful pictures of a beautiful little boy. How I wish I could come over and hug him! Well cyber hugs are being sent nonetheless. Hope he can feel them xxx
Good luck today Jax!!!
Peace be with you Lacey, before, during, and after today's appointment.
Cardiology appointments are the absolute worst.
Absolute worst.
Day can be a bit of an Eeyore. Boy, do I know that.
I have a friend who wants me to take Parker to Boston and get him looked at there. She swears by Boston.
Even Colorado is doing some amazing stuff with kids and PH.
Is Jax on Simvastatin? Ask Day about it.
And....re: yardsales Give me a call. I'll tell ya all about 'em!
hugs~
Oh good luck. I'm hoping and praying for you that everything turns out okay. The pictures of jax with the doggy are adorable. I'm sure he loves the soft texture against his skin!
Good luck tomorrow. Thinking of you and sweet Jax!
gOOd ViBEs to you all...we will be thinking of you...Kim n Maddie
I have been praying the cardiology appt went well today. Looking forward to an update.
You sweet mama ~ you've really had quite a load to carry, especially lately. I have been catching up on your blog and I just want to give you a big hug and a plate of cookies!
Isn't it amazing to know you have so many prayers & support for your family and cute Jax?
Also, I have some stuff for Makayla's yard sale. Please email me!
Love, xoxo, Bree
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