Felt So Fine

Felt So Fine

Thursday, May 31, 2012

Cardiac Biopsy: 1-1-0-0

If you read the title of this post and already know what it means then either I am very impressed or very sorry.

Spencer had another biopsy today. It's been 8 weeks since his last one and this one was kind of a big deal. He's been off of the steroids for a month now. We knew that the results would be a real indicator of how his body is handling the new heart without so much anti-rejection medication. The transplant nurse called about an hour ago to tell us that his biopsy came back absolutely clean!

ZERO REJECTION!! 

Today is Matt's birthday. That phone call was the best present ever!

Wednesday, May 30, 2012

Hospital Journal: There's No Place Like Home

I sat on the couch-turned-bed, looking out the window, as the clock ticked it's way to midnight. I glanced over at Spencer, asleep in his bed, and whispered "Happy New Year, my sweet boy!" The Salt Lake Valley was all lit up as I enjoyed my own personal fireworks show from the 3rd floor of the hospital. It was still so hard to believe that we had been living here in this building for three months now. It was harder still to believe how very sick my son had been, and now, how very healthy he was becoming. Most unbelievable to me though, was that with that stroke of the clock, we had finally reached the day that I had been hoping and praying for the entire three months. We were going home!

My list of ways that Primary Children's is amazing got longer and longer everyday. Even after we were home I was able to add to that list because I realized jut how perfectly they had prepared us for discharge. It was quite daunting to think of bringing Spencer home without one of his nurses right there to answer our questions, but they taught us so well. They turned much of his care--specifically his meds and dressing changes--over to us the last several days so that when we were home it was all very familiar. In fact, I felt so comfortable with things by discharge day that it was hard to be patient with all of the last minute instruction that had to be done. I was ready to go!!

Santa had somehow managed to fit this little 4-wheeler through the hospital chimney, so Spencer was able to decline the offer of a wheelchair ride to the car. He had his own wheels!

Uncle Shaun and cousin Andrew, from Virginia, happened to fly in to SLC that day. It was so great to see them and get a surrogate hug from my sister. They helped us with cars, driving mine home, so that Matt and I could ride together in one car with Spencer.
Here he is, out the front door! His shirt was a gift from another cousin, Cooper, who has a matching scar on his chest. It says, "Chicks Dig Scars".

We turned the corner onto our street and the sight that was before us reduced me to a crying mess. Our whole neighborhood as well as many family members were in front of our house, lining both sides of the street, clapping and cheering and crying right along with us. We rolled down the windows and drove through the crowd and under the welcome home banner made by his sisters, and right into the garage.

Matt and Spencer wisely stayed back from the crowd, but I had to get a hug from each and every one of them. It was an incredible moment.  It truly took the prayers, love, and effort of everyone there, as well as hundreds--maybe even thousands--of others to get our little man home. I'm so glad that they were able to experience the joy of that day with us!

Wednesday, May 23, 2012

Hospital Journal: In and Out

Spencer's room.

I'm not really sure how I feel about PCMC: CICU-Bed 10. It is a place of nightmares. I lived the worst moments of my life in that little room. However, it is also a place of miracles. It is sacred ground.

I guess if I have to pick, I would have to say that I love that room. It became home to us. We were asked occasionally, if the unit was fairly empty, if we would like to switch rooms. The one next to us has two windows. "No thanks." The room around the corner has a toilet. "Really. No thanks."  I'm actually not superstitious, at all. But I started to feel like Bed 10 was lucky, and I just plain didn't want to move.

Here is a picture of Spencer's room. This is when he was on ECMO. Now, it wasn't quite this busy for the entire three months. As a matter-of-fact, about a week after this picture was taken they put the sliding glass doors back in place so that we could close them. I think we probably made the CICU staff crazy because we would sit out at their desk to work on our laptop or make phone calls, but for a time there just simply wasn't anywhere for us in Spencer's room.


I felt a real urgency to get pictures of Spencer's hung up in his room. I wanted to make sure that the staff knew what a sweet, happy, active, handsome little boy he was.

One of the views from Spencer's bed.


This isn't the best view of his room, but it gives you an idea of the little corner that I took possession of. Early on, one of the nurses mentioned another family who had lived on the CICU and had hung curtains in the room. My initial thought was, "That's crazy." But it was like a little nagging idea that got bigger and bigger until I thought that hanging curtains was the most brilliant idea I'd ever heard. I spent hours mapping out the room in my head until one Saturday I announced that we were moving the bed so that he would be able to see out the window and that I was bringing in a bookshelf, a lamp and curtains. It was AWESOME! Spencer could turn toward the window--and away from the door and the staff--and see toys and books and items from home.  The lamplight in the evening gave it such a cozy feel. It was just right to snuggle up on the bed with him and read stories. That little corner also gave Matt and me a place to sit where we didn't feel like we were constantly in the way of our nurses.

You can see that we didn't hesitate to add our own personal touches to the walls. It made for quite the chore when it was time to leave this room.

Another view of his corner, along with his Christmas tree and the paper chain counting down to Christmas.


Although we spent the majority of our time in that room, we did take the occasional outing around the hospital.  The Spiderman statue was a favorite.



We also took him outside a few times to the Angel Garden. We were so glad for the mild Fall weather.


We became very familiar with the entire PICU from all the laps that we did. Wheelchair, bike, walker--it didn't matter--he just liked to go.


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He loved this fish tank and we spent a good deal of time here.  We still do, as this is the waiting room for same-day surgery when he has his biopsies.

Riding his bike outside about a week after transplant.

So you can see we had lots of options. Whether we felt like a lively night out or a quiet evening in, we were content. :) 

Sunday, May 20, 2012

Hospital Journal: Christmas

Just a few more posts left in my "Hospital Journal". Here is Christmas:

The first week in the hospital when we learned just how serious this was and what it was going to take to get Spencer home, I thought through the next few months to come and knew that it was not unrealistic to assume that we would spend Christmas in the hospital. With Christmas still 11 weeks away it was an overwhelming thought.

I'm sure that it will come as no shock to anyone that this Christmas was very special for us. Our little Spencer-man had received his new heart just nine days previous and was doing SO well. The doctors were actually talking about a date to send us home. We had been blessed with such love and comfort from our Heavenly Father and the Christmas season just seemed to magnify that.

Primary Children's Medical Center is a beautiful place to be in December. Thanks to donations from the Festival of the Trees, there are beautiful, creative, fun Christmas trees throughout the building. One of Spencer's favorites was the Snoopy Tree downstairs near the front entrance. This is Spencer and me getting a closer look at the tree located around the corner from his room.



Every year we have a family Christmas party with Matt's mom, his brothers and their families. The cousins all draw names with each other and then exchange gifts at the party. This year Spencer was given the task of drawing all the names. Everyone was so great to accommodate us, making the drive to SLC so we could hold the party in the same conference room where we ate Thanksgiving dinner. Here is Spencer with the cousin exchange list.

Santa surprised us one afternoon shortly after Spencer's transplant. He asked if Spencer had been a good boy this year and also asked what Spencer would like for Christmas. "A nerf gun".

I went home and brought the girls to SLC on the 23rd. Some very kind neighbors had arranged for a hotel for us so that we could be together at Christmas. By this time we had moved off of the CICU and upstairs to a bigger, more private room. On Christmas Eve we spent the afternoon in Spencer's room doing some crafts...

...and decorating a gingerbread house.

We were SO grateful for the bigger room where we could just have fun together.

On Christmas morning, the girls and I made our way to the hospital, where Spencer and Matt had slept right through Santa's visit, to find that we had been very spoiled by Santa and family and some wonderful friends.

Claire

Corinne

Nicole

Paige

Spencer

Pretty-Princess Claire has worn this dress nearly everyday since Christmas. It was picked out very specifically for her by Spencer.

Spencer opening his castle--which he later said was his favorite present.

This conference room was just becoming a little too familiar to us. We were SO thankful to the hospital though for letting us use it so many times.

Here are Corinne and Claire enjoying a lazy morning-after-Christmas in the hotel room.

The hotel staff was aware of our situation, so they decorated our room for us. The girls were amazed when we opened the door for the first time and saw snowflakes and a tree. There were also lights on the balcony, scented pine cones by the fireplace, Nat King Cole singing from a CD player, candy canes and cookies on the table, board games, coloring books and Christmas movies in the living room, and even cold cereal and milk for breakfast. I was so touched by their kindness. The days leading up to Christmas we were all sort of bummed at not being home and together for Christmas. The girls kept saying, "It just doesn't feel like Christmas this year." But walking into this hotel room was just magical for us as "the true spirit of Christmas" was displayed in full!

Here we are on the afternoon of the 26th after walking to the sky bridge together. It was really difficult to drive away that day, taking the girls home, after being together for three days straight.

Wednesday, May 9, 2012

Happy 12th!!

Whether I like it or not, my children just keep getting older! Our sweet Corinne turned twelve last week which means that she is in Young Womens now at church. She was both nervous and excited to graduate from Primary and go in with the older girls, but she adapted quickly. It doesn't hurt that her best friend will join her in two more weeks.

She had some friends over for a party and they had lots of happy, squeal-y, fun! Claire, Spencer, Paige and Matt were the waiters for the "crazy dinner", and after several courses of strange combinations the girls all eventually ordered something to satisfy their bellies.

Here is Corinne opening cards and presents from friends:
Blowing out candles on her "chocolate chip cookie dough brownies". (Yep! They are as evil as they sound.)

~ ~ ~ ~ ~

The next day was her actual birthday and here she is opening presents while her siblings stand ready to assist.
Her checkerboard cake:

Visible proof that she really is twelve. Who else would squirm like that when confronted with such attention? But wow! What a great set of lungs she's got! We love you, Rinnie Tin Tin!! 
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