Dec 30, Day 194, Playing with cousins

Ya know, it is weird. We seem to be living the same day over and over, but yet we have something interesting (or not) every day. First of all, thank you for all the nice birthday wishes. We all enjoy reading and interacting with all the nice messages. Thanks again for your support.

All of us went to church today. After the 1st hour, Aunt Tara and Michone went back to stay with Lindsey, per Lindsey's request. After church we spent the day as usual, play room, Sobrato room, Lindsey's room, walks, but this time it was with ALL the kids (our 5 plus 5 cousins). That brings a lot of excitement to 3 West, Room 3241. Those 4 boys LOVE to fight/wrestle.

So the way we are working it is Tara stays in the small motor home they brought with Michone, Ashley, Sierra, Megan and Kalli. Stacy is in the RMH with the 4 boys, Landon, Ryan, Hunter and Gage. I am here with our Princess. We will have 5 sad kids when their cousins have to pull out.

Tomorrow morning we have the usual weekly blood draws and dressing changes. Oh how she loves Monday mornings.

Girls playing a 'Clean' game of Monopoly in the Sobrato Room

The fight

 Now every one is joining in. I joined to play referee.  You can't see, but Stacy and the nurse were right behind Linds.

 Lindsey and Sergio. He is a 3 year old on a double Berlin. He has been waiting several months.

Dec 29, Happy Birthday Girl

Wow, what a day. We had activities and parties most of the day.  Kim was her nurse today, and once again the nurses did a great job letting us stay out of her room and out doing activities.

She seemed to be back to her good ole' self today. No real signs of nauseous, tummy aches, or abdominal pain. That's all good. Before I get into today, I need to clean up a few 'loose ends'. (Remember this is my way of 'dumping' the activities, stress, emotion and moving on).

Yesterday we gave away our last marshmallow shooter. When we were out in the LPCH Atrium shooting the marshmallows to the 2nd and 3rd floor window seals (that was fun), we saw a mother and 2 kids watching us from inside. We motioned for them to come outside and we gave them our last 2 guns. That seems to really make their day and our kids felt good about bringing a smile to the 2 kids. I now believe every kid in this hospital that we are aware of now has a gun. This was just another good moment I didn't want to forget.

This morning we asked the doctor about the 'offers' they have received in Lindsey's behalf.  They said there have been several, but again they are waiting for the 'perfect' heart because of how stable Lindsey is. The reasons they declined the past offers include; two offers were too far away, one offer was from Texas and another from Pennsylvania, (they like to be within 4 hour of the operating room, around 1500 miles max) 2 other offers were hearts not in perfect condition, other transplant centers had declined the organ and so did we. (one was a motorcycle wreck, and the other he didn't say). So basically as long as she stays stable, they are holding out for the 'perfect' heart.

Now on to Lindsey's day. Sadie was invited over and stayed most of the day. She really made it feel special to Lindsey. We were all very impressed how comfortable she was with Lindsey and how good she made her feel. Thanks Sadie! From 11:30am until 8:00pm there were things going on. They made balloon animals, played games in the Sobrato Room, made funky braclets, then to the play room, back to the Sobrato room at 4:30 for a party with Chloe, Annalyce, and Shaambak's families. Played the wii, ate pizza cake and ice cream, had dress up pictures, and opened presents. After they all went home, we skyped with Stacy's family in Utah. That was sure fun to see all her Utah relatives. Finally, Tara Bingham (my brother Josh's wife) and their 5 kids showed up from Idaho for the weekend. Now we have a really party going on. Take our 5 plus their 5 equals a LOT of kids and 4 WILD BOYS!

I admit, today would have been a fun day to receive thee offer, but it didn't so we need to move on. It will happen when it happens. The Lord has a plan, the donor is being prepared, Lindsey has received a blessing and is stable.  I trust in the Lord and in the blessing we have received.

Sadie and Lindsey getting started

Her morning walk around the 2nd floor to invite some kids to the party

Some card game. They were all laughing pretty hard

Now to the braclets

 Let the party begin

 This is a neat picture you won't see everyday. You have 3 transplants, Chloe, Sierra and Annalyce. And you have 2 kids on the Berlin, Shaambak and Lindsey. All brave strong kids in their own way. This may have been Shaambak's 1st time to the 3rd floor. He has had one rough go!

 Dress up time

 Annalyce, Sadie, and Lindsey

 Nurse Kim and Linds

 This is funny, you have Gage, Laden, and Noah (Chloe's brothers).  We hear them all the time through the wall at the RMH. Funny little boys!

Noah, Chloe's oldest brother
 

Annalyce and ? She is the older sister of of a 2 year old on a Berlin waiting for a heart in the CVICU.

(She told me her name, but I can't remember)

  

Dec 28, Doing much Better!

Stacy here
I get to update the blog tonight.  Jason slept at the RMH last night and slept so well that I thought he should have another night to get caught up on the sleep he lost the night before.  Lindsey also slept very well. She slept all night and woke up in a VERY good mood this morning.  She had her favorite nurse Shannon and her pain was at a 3-4 (out of 10).  Lindsey acted much better too.  She was her spunky little self again.  Thank you for your prayers and concern. Hard to believe those prayers don't help!

We went to the fountain this morning (Lucile Packard fountain not Stanford), and played with the marshmallow shooters and bubbles.  It was a little cool outside, but the fresh air felt great.  She was allowed to go to the playroom today.  Yesterday she couldn't because they wanted to make sure she didn't have anything contagious or infectious.  After the playroom, it was time for the inevitable... REPLACE THE FEEDING TUBE.  It is really funny how she suddenly finds every excuse in the world to put off these procedures.  I don't blame her, I would too.  This time the experience was much better.  It took two tries, the first try was with the tube barely in but not advancing down her nose.  The tube sat in the back of her nose for almost an hour.  The nurse would try to advance it, but it kept hitting something blocking it from going to the back of her throat.  Shannon would stop and wait until Lindsey told her it was okay to try again (which could really take awhile).  But, it just would not advance.  A second nurse, Tracy, came and tried, but could not get it to advance either.  They went for a smaller size and it slid right in.  We were very happy when it was over, Lindsey especially. 

Lindsey is very excited for her birthday tomorrow.  It appears that she will be 9 years old when she receives her transplant.  That would be a wonderful present for her!  Jason was asking the doctors if there have been any 'offers' that they couldn't take or has there truly been nothing.  They admitted that there have been at least a few that they could not take.  As Dr. Hollander said," Lindsey is very stable, which allows us to be more picky about the heart she gets." We do want the "perfect" heart for Lindsey and are willing to wait for that heart.  We are grateful that she is in a situation that they can be picky.  Sometimes if the patient is really in the need for a transplant, they will accept some that will work, but are not ideal.  So, we will, as patiently as possible, wait for that "perfect" heart.

 Shannon, Tracy and her mother helping Linds relax through the feeding tube. Not an easy thing to do.

 Greater love hath no nurse than this.

Dec 27, No answers

Still a pewny day for Little Miss Lindsey Lou. We were up a lot last night with abdominal pain.  It was like the good ole' times when we had a lot of the big docs here addressing issues with the team. Brought back all kinds of warm fuzzy feelings, with her all curled up on the bed. So here is where we stand.

They did a number of tests on her including blood draws, x-ray (KUB), urine analysis, abdominal ultrasound, heart monitors, iv fluids, dressing change, and a variety of pain meds. She has not had any fevers or diarrhea or any kind of appetite.  Thank goodness the pain meds have worked.  This morning her pain level was a 10 with 10 being the worse, now it is at a 7, but she is over there playing games and arguing with Hunter.

The team has brain stormed and tried to identify everything it could be. Then used the above tests and analysis to narrow the possibilities.  Right now they are leaning towards infection issues relating to the cannula site. It doesn't look any better and even has an odor to it. The surgeon, Dr Katz Maeda, will be here in the morning (Friday) to look at the cannula sites. They have also mentioned it might be an appendicitis, which would be very bad. Everyone is hoping it is something that will resolve itself or manageable, but they continue to aggressively pursue it.

It was a rough day for the rest of the kids. I have work I have to get to and Stacy was needed here with Lindsey.  That leaves the kids in Lindsey's room all day. Stacy and I are so sick of electronic devices, but there comes a point (after 7 months to be exact) that you just....have to keep going.

Tonight after work, Stacy was telling me how hard this has been not getting the transplant by Christmas.  She really felt deeply, as did I, that it was going to happen by now. We have to be so careful, Lindsey and rest of the crew can pick up on the smallest attitude changes in us, and then they feed on it. If we are down, they are down, but if we are up, then they can keep going.  Sometimes it is really hard to keep that kind of energy up all the time, always trying to be happy and positive. But we can, we must.

Chloe went home to the Ronald McDonald House today.  It was 3 weeks yesterday that she received her transplant.  She has had one biopsy and it was a 1A.  She is doing very well.

Dec 26, Wednesday, A Lousy Day

She has had one lousy day. Definitely not like Christmas day!  Felt nauseous all morning and finally threw up her feeding tube at around noon. Hasn't felt good at all. No fevers or diarrhea...yet, and no one else is feeling sick, so we are not sure why. She perked up a little bit but hasn't eaten anything and has drank very little. We dragged her on 2 short walks but didn't seem to help. Tonight around 8:00 she tried to take her night meds and threw them all up.

So now it's 10:30 pm, they have started an IV to keep her fluids up. If she gets too dehydrated, it affects how well the Berlin empties and fills, and that is a big deal. They are NOT going to put in the feed tube tonight for obvious reasons (throw it back up). Hopefully giving her more time off the feeds will help her tummy to settle down. The IV is there to keep her fluids up.

Boys went to Hansens (thanks Michelle) and I had a tax appointment with a potential new client. Other than that we have just been here with Lindsey.  These days are not fun at all. Stacy did a great job comforting our Princess.

Now it is after 11pm, she has just retaken her anti-clotting meds.  She still feels nauseous.  Hopefully they will stay down and she can sleep this off. This is hoping for a good night.

Dec 25, Day 189, Merry Christmas

Really was a nice Christmas day. We did our usual Christmas morning routine.  Get up, cleaned up, breakfast eaten, before we open any presents. We had Stacy's traditional orange rolls and hot chocolate in the Sobrato Room, then to Lindsey's 'cave' to begin the destruction. As always we (I) like to take our time opening presents to enjoy the experience as long as possible. This time it had a twist, at 9:30, the echo lady came by for Lindsey's echo.  We pushed her off until 11:00, but she was back and wanted to get the echo done now. She was there to do her job, not a lot of Christmas spirit there. Our nurse, English Tracy, told her to back off and wait while we opened up a trail for her to get to Lindsey's bedside with the echo machine. It was just a routine echo, nothing major. We didn't let it bother us.

After opening and playing with the gifts, we had a Christmas dinner in the Sobrato Room with Chloe's family, and Annalys' family.  Nice to have lots of kids around. The Rowe's brought over a honey glazed ham and stayed to visit a bit. Very nice of them.

This evening we were able to skype with our family back in Oregon, and Stacy was able to visit with her family as well.  Love to hear about the cruddy weather and snow back home.

Mike and Linda Wright also came over for a visit. It was very nice talking with them while the kids played with there toys. Mike is the one who came over and read to Sierra, Megan and Lindsey 6 years ago. They are sure good people.

Stacy went home with the kids and a load of 'stuff' and I am here with our Princess. The kids all had a good day and that is what matters. As for me, words can not express how badly I want to sleep at the RMH with my wife..... But not yet.

Tomorrow I have some work to do, and Stacy has the daunting task of cleaning this cave out. It has been nothing but trails all day.  All good fun stuff, but narrow trails none the less.

 I won't lie, we were all hoping today would be the day. Even Lindsey said she is ready, but the donor family is not and we respect that.

 Sandy Cummings updated her NBC blog post. Below is a link to what she wrote. It was very kind.

http://insidedateline.nbcnews.com/_news/2012/12/24/16125774-lindsey-lous-christmas-wish?lite

 Christmas breakfast in the Sobrato Room

 Destruction has begun

 We 'might' be TRUE BLUE AGGIES!!

 Christmas dinner from some very nice people in the ward.

 Just Dance 4

 Annalys and Lindsey.

Dec 24, Day 188, Christmas Eve

11:40 pm.
Started off a bit sluggish but finished with a bang. Stacy and I both worried that today might be a tough day to get through. The traditions we have back home go deep and we thought of it often today.  We were also thinking the transplant would have happened by now. I know we shouldn't think like that.

Since I can remember, on Christmas Eve, the Bingham families along with Stephens, Thompsons, and anyone else would go up to 'The Little Alps' to go tubing. It was and still is a great way to spend Christmas Eve. The kids loved it and when they got cold and tired, then the 'big boys' would build an awesome jump and go off it until it was too dark or someone got hurt.  This year the 'record' for the longest jump was 34 feet, held by one of the Stephens boys. It's a good thing we weren't there.

Anyway, Justin kept me up to speed on the activities and we did our own thing here. This morning was slow, and Lindsey even had a bit of a melt down. Same ole thing, she hates it here and wants out. You can only do so many crafts and games.  (I really don't blame her)  At around 1:00 Santa and his helpers came by. He was handing out gifts and they were singing in the hallways. Then at 2:00 we really got things going. Some of my awesome cousins sent marshmallow shooters made out of pvc tubing. Our nurse was great and took the time to let us play.  We went down to the LPCH Atrium and we had a marshmallow 'snowball' fight. It was a great little battle field with places to hide and attack. It was really fun to just 'have fun'.  All of the kids loved it. We gave out other shooters to other hospital kids and they headed out to give them a try.

After the battle, around 5:00 we went to the Sobrato Room for Stacy's pinata party. Another tradition that goes way back in her family. We had a couple of other families with us and we all had a good time. Lindsey had made the pinata in PT and 'Shella' was ready for a good woopin'. All the kids were able to take a couple of good cracks at her. We also had homemade chili and cornbread.  No one got clocked with the pinata stick so it must have been a success.  BIG thanks to our nurse Denise and the charge nurse Tracy.  They really went out of their way to keep Lindsey out of her room and with her family and friends doing activities. Thanks!

This evening we spent time reading from Luke chapter 2 and talking about the birth of our Savior.  This is a special time of year.   We are blessed and waiting that special day.  God still hears our prayers.

Lindsey is finally asleep, so I can finish up here and go to bed. Santa will be here soon and I need to find my little cot.

 Sierra had just shot Denise, the Nurse, as she was taking the picture.

  Just because

 Justin's pictures from back home (never did show these to the kids)

I think that is Colby.

 The battle goes on

This is Annalees, she is 6 years old and received a tranplant a couple of weeks ago. She has become one our dear little friends.

Noah getting ready. Layden right smack in the way.  They are older brothers to Chloe who also recieved a heart.