Jan 29, 2014 | Natalie's Life
This will be fairly short, but we’ll give a more detailed update later this evening.
Natalie has made it out of surgery, and she did really well. They made the adjustments to the pulmonary artery & aorta, tightened the PA bands, and took down the wall between the left & right atrium. They are going to keep the breastbone separated for now, just in case they need to loosen the PA bands. It will depend on how her oxygen saturation looks in the next couple of days. She is recovering now, and we’ll be able to see her in an hour or so.
She is going to be taken to the ICU, and will remain there for several days. She will be kept asleep while her body adjusts, but we will at least be able to see her and sit in the room with her. I’m guessing she will be kept in a coma for at least four days.
Like I said, this is pretty short. We’ll update later when we get up in the room with her. I’ll have Heidi update then, she’s a little more wordy than I am. Thank you everyone who has been praying and thinking about Natalie and us. We’re very thankful.
Jan 28, 2014 | Natalie's Life
Hi everyone,
It’s been an extremely long day, but we’re finally back to the room. The meeting with the surgeon went well, and it looks like we have a plan for Natalie.
As we said yesterday, her pressures were up and her current anatomy isn’t going to work. They have a surgery date scheduled tomorrow, and we’ll take Natalie over at 7:00 am. Dr. delNido will be doing an open-heart procedure to get the atrial pressures and her lung pressures to go down. Right now, some of the pressures are so high that she isn’t even a candidate for a transplant or any other procedure. They will join the pulmonary artery and aorta in order to shunt blood and lessen the lung pressures. They will also put a band on the pulmonary artery. They will keep her in a coma for several days after the surgery in order to keep all the pressures down as her body adjusts to this new anatomy.
This will be done in order to get her to a place where we will have some options. The transplant is still an option, but obviously that would be done as a last resort. We will monitor for a few months after the surgery to see how she is adjusting, and how her heart is doing. If all is well, there is a good chance that Dr. delNido could do another procedure to make the right side of her heart do a majority of the work while keeping her left side operating and helping the right side. This would be optimal since she’d be able to keep her heart and would have a much better quality of life than she would if she has a transplant.
This was just a quick overview of what they’ll be doing. Heidi and I will update as we learn more, and to let everyone know how each step along the way is going. Thank you again for the prayers, we appreciate them very much.
Jan 27, 2014 | Natalie's Life
Hi everyone,
The good news is that Natalie made it through her catheter procedure today and is doing well. She’s discharged from the hospital and we’re all back at the room trying to get some rest. She REALLY needs some sleep, but other than that, she is doing fine.
The bad news is that her pressures haven’t gotten better, in fact they’ve gotten worse. This means that her current heart configuration will not work. We are meeting with her surgeon, Dr. delNido, tomorrow. We will discuss whether he thinks he can intervene surgically in order to repair her heart. If he doesn’t think he can do anything further, then we will have to come home and list her for a heart transplant.
We really won’t know much until after we meet with him, so we’ll update with more detail tomorrow evening. We just wanted to give a quick update, as we know many of our friends and family are worried and are following the situation. We’re very thankful for that, by the way.
We appreciate the continued prayers, we really do appreciate it. If you could, pray for Natalie, but also pray for wisdom for us so that we may make the correct decision for Natalie. Again, we’ll update tomorrow when we know what the final decision will be.
Jan 16, 2014 | Natalie's Life
Hello everyone. We thought we’d get an update out here for those who want to know a little more about what’s going on with Natalie. We update Facebook, but there’s only so much you can do on there.
Heidi and Natalie are on their way back from Minneapolis after a 10 day adventure. This all started on Saturday Jan. 4, when Natalie started vomiting and couldn’t keep anything down. We tried what we could, but nothing improved by Sunday. Our cardiologist told us to bring her in to the hospital, so we did that day. She stayed in the hospital in Bismarck until Thursday, and the doctor sent her via air ambulance to Minneapolis where they had more resources to get her better. They adjusted feeds, and tried several different things to get her vomiting under control, which they finally accomplished. The belief is that she probably caught some kind of virus, which was exacerbated by what she already has going on with her heart.
So, at long last, they get to come home, thankfully. It’s been a long week without them here as I drove to Minneapolis over the weekend, but had to be back for work this week.
Through all of this, it was decided by the cardiologists & surgeons that it would be better for us to go to Boston sooner, rather than waiting for our existing appointment at the end of February. We’re flying to Boston on January 25, and they’ll be doing another cath (catheter procedure where they go through the femoral artery in Natalie’s leg to go into the heart) on January 27th. What they find in the cath will dictate what happens from there. Basically, there are three possible scenarios. 1) they find that her pressures have improved and she’s doing well, and they don’t need to adjust anything. Then we could come home. 2) they feel her pressures are better, but they feel that they need to intervene surgically to further improve her heart functioning. 3) her pressures are worse or haven’t improved, and we need to list Natalie for a heart transplant.
Obviously, we’re praying for scenario 1, and we definitely don’t want it to be scenario 3. If it is scenario 2, they already have a surgery scheduled for Wednesday, January 29th. We really don’t know a lot until they perform the cath on January 27th. We will update here as the date gets closer, and when we have more information to pass along. Right now, it’s more waiting and unknowns. We pray that Natalie doesn’t need a heart transplant, but it’s still a possibility.
We want to thank everyone for the continued prayers and well wishes, we’re blessed to have the friends and family we have in our lives.
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