Nathan’s Story

Site created on December 8, 2006

Welcome to Nathan's CaringBridge site!

Nathan was born November 16, 2006. 

In December 2006, he underwent open heart surgery to try and correct his heart murmur, which was later diagnosed as aortic stenosis. 

In 2008, he had an artificial valve put in to replace his aortic valve. 

In April 2012, Nathan had his artificial valve replaced with a human heart valve, which took him off of blood thinners. After that surgery, Nathan's heart did not come out of "heart block" which meant the top and bottom chambers of his heart were not speaking to each other. So a week after his surgery, he had a pacemaker installed. 

In November 2019, it was discovered that Nathan is growing (like kids do) and his valve was getting too small. So January 2020, Nathan had a Ross procedure performed. It was a difficult and long surgery for both Nathan and the surgeon, but they made it. Nathan also had a new pacemaker put in during that hospital stay, which was placed in his right shoulder. 

In May 2021, Nathan underwent a heart catheterization to try an uncover why he was retaining so much fluid and why he just wasn't recovering from the January 2020 surgery. His heart was very sick and so he was started on milrinone, which we could luckily administer at home. 

In December 2021, we went to the Mayo to have his milrinone dose possibly increased as Nathan was getting more tired as the days went on. They decided to admit him and he was put as 1a status on the transplant list.

On January 13th, 2022 Nathan received the miraculous gift of a new heart from a beautiful donor. He also received something call a Nuss bar, which is attached to his ribs and helps his chest keep it's shape as it heals. 

Thank you for your prayers and support!

Newest Update

Journal entry by Mary Ruhland

The past week was spent in Rochester for Nathan's two-year appointments.

Monday was a DAY. Nine appointments full of information, blood draws, xrays, echos, blood sugar, and much more. We are happy to report that Nathan's numbers have all stayed the same or improved. What an incredible relief!

Tuesday was Nathan's heart cath, which typically takes all day. Show up early, get prepped, the actual heart cath itself doesn't take very long, but it takes Nathan a looooong time to wake up from the anesthesia. Dr. Ameduri was pleased with what she saw and there really was no change from last year's cath info to this year's. Yet another blessing and relief. 

Wednesday there were only two appointments. One with dermatology so they could check Nathan for skin cancer and address the mole on his face, and one with Dr. Ameduri to give us the rundown on the heart cath and what to expect in the coming months. Dr. Ameduri had the results from the heart cath biopsy and was very happy with what she saw. Nathan's heart has actually improved since last year's biopsy. Blessedly, no sign of rejection, his heart is more relaxed and is squeezing better, and his coronary artery looks great. Freaking yay!!!! We'll come back to see the Mayo peeps in a few months, with local blood draws to continue.

Thursday was only ONE appointment, mid-afternoon. I tried to call and see if it could be moved earlier, but the doctor only has openings in the afternoon. It was a visit about Nathan's nuss bar though, so it was important to meet up. Dr. Wiegel was pleased with the shape of Nathan's chest, considering how concave it was prior to his transplant. The bar will have to stay in a little longer than 3 years possibly, but for now they will monitor it and when it's time, it's a relatively simple removal process, one night in the hospital. 

For now, Nathan's action items are: test blood sugar in the morning and two hours after his last meal of the day, just to monitor. He also needs to breathe deeper more often and drink more fluids (a constant battle). And use a special shampoo to combat the scalp becoming more scaly (a side effect from one of his meds). Nathan is also allowed to stop taking a couple meds, going down a bit on one, and adding a bit more sirolimus to his regimen. It's all a balancing act but considering how well his appointments went this week, the Mayo and Nathan are doing a pretty good job making it work.

As a side note, we are still using the funds that were raised for Nathan at his fundraiser. We have not exhausted them yet! Which is awesome because one of his meds today was $765. A bit of a sticker shock! It all works out though because once we've met the deductible, it will be covered 100%. 

Showering gratefulness on the Mayo staff, our friends and family, and COTA. Mwah!

Love,
Mary, Brian, Nathan, Ellie, and Queenah

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If you are interested and feel called to help, you can donate to COTA in honor of Nathan, to assist with transplant-related expenses. Please visit: https://cota.org/campaigns/COTAforBraveheartNathan

 

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