So we finally got to talk to the Cardi0-Thorasic surgeon and our ENT today, at the same time, too, which was nice. It was not the conversation I envisioned having.
Here’s things the way I understand them- they think that she has something called a Vascular Ring around her trachea. It’s where part of the aorta is too close to the windpipe. That much we knew.
However (don’t you LOVE the “however” in a medical situation?), the thing that has them confused, and the reason they haven’t committed to anything yet, is that every other time this has happened, it’s associated with an abnormally placed aorta. When that happens, the correction is slightly easier to accomplish. He was convinced that something had been missed in her echos in the past, but her echo this afternoon was perfect. He used the term “undocumented” a couple times, which is great (right up there with the “impressive” comment from the anesthesiologist regarding the obstruction to start with).
So, the end-all of our conversation is that they know what they’re going to try, but they’re not convinced it’s going to work. The ENT and the Cardio are going to be in there together. They’ll do a bronchoscope, lift the aorta, and see if it makes a difference. If it does, they’ll stitch it to the back of her chest, and things should get better. We haven’t explored the “if it doesn’t” possibility. Piper’s been warned that she’s not allowed to go there.
The absolutely, bar-none, yuckiest, worst and most nasty part of it all is that, in order to do the repair, they’ll have to completely open her chest and break her sternum. It really threw me a curve ball. They had talked about going in between her ribs or something, but that’s not an option. I’m pretty much horrified at the moment at the prospect of it all. It really came as a complete shock. I figured it was a relatively small procedure, not major surgery.
The cardio said that he’s really not wanting to go in there and do it under these circumstances, because we don’t really know what the outcome will be. They’re nervous about not “knowing”, and also doing it all to her when she’ll have been intubated 3 times in 5 days. However, he also feels like the other two stenoses are results of this, and that by clearing this, it may correct all the issues that are going on in her airway.
So, I guess that we’ll just pray that it goes smoothly and as planned, and works, that she does well with the anesthesia, and that we can go home by the end of the week next week.
It’s been a long day. I’m going to make Luke stay at the hospital tonight so I can go home and get a little sleep. And pick up some clothes and food for the next few days. Hopefully this weekend can be fun for Piper; we’re going to try and keep her moving, build up her strength again after being NPO for two and half days, and make the days go by quickly. So, all the fun we’ll be having should surely lead to some cute pictures. For now, how stinking cute is she???
Oh my goodness, I am beside myself at this turn of events for you guys this week.
ReplyDeleteOpen her chest, break her sternum, oh Piper. YIKES!
We will keep praying for our Piper pal and for you and Luke too!
Aimee I really hope things go well and Piper gets better. I am so sorry that it is going to be such an invasive procedure. I'm praying for you all! And to answer your question: She is sooo stinkin CUTE! Love this picture.
ReplyDeleteAll our love to Princess Piper, our favorite niece! Love you so much - Justin, Rachel and Belle
ReplyDeleteP.S. As soon as you are all healed we are going for ice cream to celebrate!
Piper is in our prayers!!! When is the surgery scheduled for?
ReplyDeleteOh, BROTHER. We'll "yikes" right along with you. My chest STILL hurts when I think of LC and Jace's procedures.
ReplyDeleteWe're be cheering you on like crazy (and you KNOW we can do crazy) and anxiously awaiting the results of Monday's procedures.
Isn't this the 2nd time she's coordinated a hospital stay in conjunction with one of the squibs? Tell her we'll agree to staying out of there if SHE will...
Oh Aimee, you must feel like someone just punched you in the stomach. My heart and prayers go out to you. Luckily, Piper is one of the biggest rock stars and will get through this with a smile on her face and a hug for her mama!
ReplyDeleteSeriously, Piper, did you really think you needed a scar to match Max's? What some people will do for love ;)
Praying for little Piper...I really don't like that she has to go through all of this. You are right though, she does look really cute, despite how much trouble her anatomy is giving the Dr's!
ReplyDeleteShe is a cutie! Piper is in my prayers through all of this!!
ReplyDeleteletting you know we are thinking of you, Luke and Piper...Piper is a strong little CoOkIE...smiles
ReplyDeletewow, your poor girl! :( it's like this came out of nowhere. i pray everything goes smoothly and her hospital stay is short and sweet.
ReplyDeleteYou are in our prayers constantly! We are so surprised by this change of events. Please let us know if there is anything we can do for you.
ReplyDelete