California Here We Come - Journey #3

To update the happenings of where Jason left off, I will back up to Sierra's appointment April 22nd.  Sierra had her check up and was admitted to the hospital directly from her clinic appointment.  She was hospitalized from the 22nd -25th.  During this admission, she was given IV lasix and her weight, input (how much liquid she drank) and output (how much she peed) were monitored very closely.  Along with daily blood draws that were checking her kidney function and how they handled being hit with the strong diuretics.  We explained (politely) to the doctors that they could admit us, but we had to be home by May 2nd for prom.  Sierra had been looking forward to prom for weeks.  She was going "stag" but was very excited to be dressed up and feel pretty.  They agreed to do what they could do to make sure she was home by then.  They held to their end of the bargain and we were released the morning of the 25th in time to make a flight back home to Oregon.  She was discharged with a heart monitor that she will wear for 30 days to capture any of her dizzy episodes that she may have.

As we were leaving the hospital and hurrying to the airport, we received the devastating news that Sierra's BEST (BFF) friend Lauren, had passed away.  We love this girl deeply and will miss her immensly.  She and Sierra are so much alike.  They are both loving and caring.  Not much for the drama of highschool teenagers, level headed and easy going.  Needless to say, our week at home was very rough for Sierra and all of us.  She started feeling nauseous, weak and tired.  She was very pale with her eyes sunk in.  Take the loss of her friend, hit her with large doses of diuretics, fluid restriction of 2L, and a heart monitor you get the perfect storm. She hardly ate Mon-Wed started feeling better on Thursday and then attended the funeral on Friday to bid Lauren a final farewell.  Saturday the 1st, she was pale again, tired and nauseous, but pulled herself for the prom that night. She looked stunning!!  Had a great time at prom, but on returning vomited throughout the night.  Felt crummy Sunday and Monday.  Her kidney levels were increasing, meaning that they were not crazy about the diuretics she was on.  Monday, May 4,  we talked with the docs here at Stanford and they told us the news that we were not surprised to hear.  It was time for us to come to California where we would stay until transplant. 

Tuesday, May 5, Sierra and I left our home for the 3rd time,  for a heart transplant, not knowing when we will return. we started holding one of her diuretics.  She looked and felt better as we were driving Tuesday and even ate well.  By our appointment Wednesday, she was wondering why she was here and had to clean out her locker at school.  She looked and acted great and had color in her face.  Dr. Bernstein explained to us, that this is how diastolic heart failure works.  There is a lot of small adjusting periods.  Too much diuretics and she feels cruddy, too little diruetics and she retains water and feels cruddy.  The goal is to find the right balance. So, there will be lots of adjusting periods.  She can (for now) stay out of the hospital.  She will have blood draws and weight checks 3 x week along with clinic appointments every Wednesday.  If she starts feeling crummy or her heart monitor picks up ANY arrythmias she will be admitted until transplant.  Hopefully we can keep the right balance going and keep her out of the hospital.

Just and FYI, our kids have had dilated cardiomyopathy (elarging of the heart), this affects the squeeze of the heart.  To help fix this, they have medications that help the heart squeeze harder and when those don't work, then they have devices such as the Berlin that Lindsey was on to help.  Sierra has coronary artery disease of her transplanted heart.  This is caused diastolic heart failure, which affects the relaxation of the heart.  For this there is no extra medicine to help it or devices to place them on.  It is just the adjusting of diuretics.  When her kidneys say ouch after increasing the diuretics, you have to go down on them, narrowing your window of adjustment.  This is a new experience for us as we haven't experienced this type of heart failure yet.  We have a huge learning curve, and are surprised by how serious the doctors take her mildest symptoms.  It makes me nervous of the seriousness of her condition. 

So, again, I leave Jason with watering our 260 acres, keeping up with his accounting job, juggling being the single parent and attending all the actvities the kids have at the last month of school and carrying out his calling in the bishopric.  Sierra and I go to the hospital to school, hang out in the afternoon and sleep in (a little) in the mornings.  We have an AMAZING community and support system at home who are helping immensly and an amazing support system here in Palo Alto.  We feel so blessed and are so fortunate to be surrounded by so many wonderful people.

Sierra getting ready for prom. The final product.

 

 

Darby and Peyton who helped her get ready and did an awesome job on her hair.

 

 

 

Our farewell party Monday night with the cousins.  Lots of red, puffy eyes.

 

 

Sierra and I leaving Oregon.