Latest update, March 31

Hi everyone,

Sorry it’s been so long since we’ve updated, but we didn’t have many answers to share yet.

Over the past couple months, Natalie has recovered from her surgery, tried to wean off the medications, and battled the flu and pneumonia. There have been some successes, but also some setbacks.

Natalie was in a tough spot in January. She was in a position where her current heart anatomy wasn’t going to be able to support her. Unfortunately, her lung pressures were such that she wasn’t a candidate for transplant, either. She was at such high risk that they would not have been able to perform the surgery. Basically, we were without options.

Dr. delNido looked at the case, and came up with a surgery that he could perform. The surgery that he came up with and performed in January was a transitional surgery to get Natalie to a better spot. They were hopeful that her heart would recover and be able to function properly, and also that her lung pressures would go down. Over the past month, it has become apparent that her heart is not going to be able to support her. Fortunately, the surgery did reduce the lung pressures to where she is eligible for transplant and would be considered “low risk.”

So, it looks like we’re going to list Natalie for a heart transplant. This is obviously not the scenario we were hoping and praying for, but it’s better than what we were looking at in January. We will be able to have the transplant done in Minneapolis, so we’ll be closer to home. For now, they’ll be working on getting Natalie and Heidi out of Boston and over to Minneapolis.

Natalie hasn’t been sleeping well (or at all) since weaning off the Adavan, and she spiked a fever a couple of times. So, they transferred her back to ICU on Sunday. She just started sleeping today, so we think she’s finally over the wean.

The goal for right now is to get Natalie in a better spot so they can transfer her to Minneapolis. We think that if they can get her medications figured out, then hopefully they can transfer to Minneapolis by the end of this week or possibly next week.

Going forward, once they’re in Minneapolis, they will do some testing to make sure she’s ready for transplant. They’ll also work on getting her stabilized enough to be able to come back home while we wait for a heart to come available. Then, we’ll hopefully all be home together.

So, we wish we had better news to share, but this is where we are right now. Thank you all again for all the prayers and support throughout all of this, we are very thankful to have the family and friends we have. Heidi said to make sure to mention thank you for all the texts and messages she gets, it really helps a lot as they’re living away from home.

Heidi will give a more detailed update sometime later in the week. Thanks again, and God bless.