Sept 30, Sunday, Fun on the Deer Hunt

7:30 pm. Stacy here
Lindsey has had a great couple of days. She is eating and drinking enough that they are cutting her feeds in half. They will run the feeds for 5 hours at night and watch her weight for the next few days. If she continues to gain weight, then they will stop them all together. She had a run of PVC's in a row, but no v-tach. She is acting great and wanting to only play cards most of the day. She has taught most of the nurses how to play Nertz or Wacky 6.  Today the supervisor opened the physical therapy kitchen and allowed us to go down and make cookies and use the oven.  It was fun and Lindsey really enjoyed it!

Jason, Sierra, and Megan had a great time at deer camp. Jason got a little shooting in, but didn't kill anything.  That's okay, they just go for the fun anyway. (He is actually grateful he didn't hit it so he wouldn't have to pack it out).  Sierra was riding on the rope swing and it broke while she was in mid air. She landed square on her tail bone end and it is really sore.  This morning, Megan was riding on a horse bare back and another horse started kicking the horse Megan was on. Unfortunately, Megan received one of the kicks square in her arm and she went flying.  Luckily, neither of them have any broken bones, just some good bruises and good stories to tell.  Justin (Jason's brother) did get a deer in goat basin so he was camp king. There are always fun stories to tell after deer camp, no matter what the outcome is. Lindsey was sure missed!

Sierra and Megan will be back to Cali tonight and Jason will return on Tuesday. Unless we give him a reason to come back earlier.  Thank you Josh for seeing the girls to the airport! We really appreciate it.

 Coming up with a Plan

 Kalli, Landon, and Roper into the Blackberries. They were good!

Lindsey as always with us.
 

 Lindsey going for dip

 Coming out of the canyon and we are pooped!

 The cousins with Lindsey in the middle

 Beebee gun shooting.  Kids love to shoot cans

Taken it easy in camp with Jake, Justin, Nick, Josh, Grandpa and Lindsey.
That's the kids outhouse in the far left.  It was to small for the big boys, we had to make our own.

Sept 28, Day 101, Nothing Yet

Stacy here.
Well apparently Day 101 was not THEE day.  Lindsey is still doing awesome! She ate well today, even more than yesterday.  The doctors are going to slowly try and wean her from her feeds. They have a calculation that they do to subtract whatever fluid she drinks from the feeds they run at night.  So far, she has gone from having the feeds 18 hours to now running 10 hours. This is all great news. She is maintaining her weight, if not gaining.  She is in ideal position physically for a transplant. However, she did have a small run of fast beats. Technically they couldn't call it v-tach but it was on the boarder. So I am sure they will be watching her closely. The episode she had did not affect her in any way or the Berlin filling.

Jason, Sierra and Megan left today for the "Big" Oregon deer hunt. They made it to home fine. I sure hope they have a good time. I sure miss being home to have our "wives home with the kids that are too young night." This is probably the only time I hope the heart doesn't come. Jason will be out of service and unable to reach.  I am willing to have her get her heart without him though. All I can say is he better get the largest buck to have ever been pulled out of Imnaha!

Gage, Hunter, Lindsey and I get to hang out all day tomorrow. We have big plans, long walks, the play room and a movie night. It will be fun! My mom comes on Sunday, as well as the girls. Tonight we celebrated Wyatt's birthday in the Sobrato room. Another great party with "all the gang." Lots of fun and lots of noise! Good times. Happy #3 Wyatt! Thank you for coming to the hospital to celebrate it so Lindsey could be there.

Sept 27, DAY 100 & Doing the Roger Rabbit

No official party for Day 100.  But you do get a sense that we may have reached a sort of 'Right of Passage' so to speak. Maybe, just maybe, we have done out time and we are getting close.   Who knows, it's just a feeling.

 Kids all went to school. Lindsey continuing to stay strong. I got some work done. Still no V-tach. Eating together as family in the Sabroto Room. All good stuff. They have adjusted her feeds to encourage her to eat more. She ate a bit today, but still not enough without the feeding tube. Still getting poked at least 2 times a day, mostly for anti-clot medicine. She is pretty tough.

On her walks she likes to take her ipod with her to play music.  Tonight Lindsey was listening to the '90s music Ace of Base and the nurse, Riza, taught her the 'Roger Rabbit' and 'The Running Man'.  They were having a good time.  I will have to get a video clip of it. 

Megan, Sierra and I are leaving early in the morning to catch a plane home.  This weekend is the annual deer hunt, a family tradition that goes back to my early childhood. We have gone to this same place since 1981. We all feel horrible that Lindsey can't go, but she understands and this will be good for Sierra and Megan to be involved in a deep family tradition.  We are going to take lots of pictures and video for our Princess and call her as often as we can.  Stacy isn't crazy about it, but will have help from ladies in the ward and her mom will be flying in.

Speaking of traditions, Stacy is already planning her Halloween party in October.  We are going to go all out to make this as fun as possible.  Some of Lindsey's favorite nurses are coming up with good ideas.

With our luck, we will get the 'call' this weekend.  What a great problem to have! 

Judy, Lindsey rotates that soft pink blanket with 3 other blankets.  We have to steel that thing away to wash it every so often.  Sometimes her feed tube leaks out over the blanket.

Thanks again for your comments and letting us know who you are. They are a strength to us.

Sept 26, So far so good

8:20 pm
It's been 38 hours since her last V-tach episode.  They gave her some extra fluid last night to see if that will help.  So far so good.  She does seem to be retaining some fluid, you can see it in her cheeks. Still a big balancing act with that child.  They have increased her tube feeds to give a little more 'volumn' in her blood.  All Dr. Rosenthal's idea, and so far seems to be working.

She is still acting great.  Been going on 40 minute walks sometimes kicking a bouncy ball, sometimes out to the fountain, but each time we try to come up with different ways to walk the same ole halls.  So far security hasn't kicked us out, haha.

Stacy stayed here with our Princess last night, maybe she is the good luck to keep the alarms at bay. This morning before Stacy could go home to clean up, Steve Young and his wife were here for a fund raiser for the 'Forever Young' playroom.  They took some pictures of Lindsey and Steve talking, and a few close ups of Stacy.  She was pretty embarrassed.  You can see the clip at

http://abclocal.go.com/kgo/story?section=news/sports/pro/football&id=8826007

Ben and Angel were here for his 3 month checkup. Last time he was here, Lindsey was still pre-Berlin. Crazy.  Anyway, it is always good to see them.  We will see them again in 3 months, this time hopefully post transplant.

Lindsey Skyped with her 3rd grade class in Oregon. Sometimes she didn't know what to say, but it was definitely a highlight of her day! Thanks Molly, you did great!

No school today for anyone, so Lindsey has had quite a bit of sibling time today.

 Steve and Lindsey in the 'Forever Young Zone' playroom.  Just down the hall from her room.

 On a walk through the CVICU. (Just passing through to make sure a room is available for transplant).  This time Dr. Axelrod fell victim to the Princess' request for push ups.

Dr's Hollander, ? (great doc just can't remember his name), Axelrod, and Ashwin.

Hangin' out at the center fountain

 Sierra and Ben, 'Heart' buddies since 2006.

 Stacy and Angel

Another game of Nerts

Sept 25, Brainstorming the 15 beat V-tach

What a trooper. She was in a good mood for both of her pokes last night.  I was tired and cranky for both pokes.
At 6:00 am, she had a 15 beat V-tach at a heart rate of about 160. That has everyone's attention.  They rounded early this morning to discuss Lindsey's arrhythmia's, and frankly the jury is split.  Thank goodness she still feels and acts good, her vad is still filling however it was a bit sluggish during the 10 seconds of V-tach (irregular heart beats).  They admitted, it is very uncommon to have someone on a Berlin and have these irregular heart beats.  So now they are brain storming for options and have included us in that brain storm (which felt kinda weird).  Some options they are considering is a cardiac catheritazation, she had this just before she was put on the list. Basically it is a biopsy of the right side to look inside the heart, take some measurements, possibily get some answers, or just rule out any possible causes.
Other options include additional oral or IV medicines.  We told the team we will fight to keep her on the 3rd floor, until she shows signs of sickness or vad issues, we think she should stay here. They are trying to rule out whether this problem is being caused by the right side of the heart or if it is something else (whatever that is).  However, if it is not the right side of the heart, then that rules out some treatments that they might try, that would not be necessary, one of them being an IV medication she would have to go to the CVICU to be started on.  Thus, we are leaning a little more to the cathiterization to rule out unecessary treatments and get some answers.  These rhythms are slowly starting to get a little longer and more frequent.  Thus the more concerning part for all of the doctors.

She did get the shots changed.  They are now at 3:00 in the afternoon and morning, with a blood draw at 7:00 am and pm.  She almost sleeps through the shots, so we are a lot more happier with these times. So, all in all, Lindsey is still doing well.  She is acting great and is back to her little "bossy" and "motherly" self.  ESPECIALLY when it comes to Hunter.  It's a love - hate relationship. Thank you all for your words of encouragement.  Also, for the many thoughtful fundraisers in Lindsey's behalf.

Sept 24, Hunters #6 Birthday

Same ole same ole for Lindsey.  Basically doing great, just watching the crazy beats.  A bit sleepy after her late night of Wacky 6 with her nurse.

Hunter was pretty excited about his #6 birthday.  Had his favorite breakfast this morning, Stacy took cupcakes to his school, and had a party in the Sabroto room at the hospital for him. The pictures will tell all. 

Megan had her 2nd volleyball game this evening, They won but it wasn't pretty.

Just found out tonight she has to get a blood thinner shot at 1:00 am then a blood draw at 5:00 am to test the level. Really?  Sometimes I think the young new doctors get wrapped up looking at the numbers and following the protocol they forget about the patient.  I have fought this one pretty hard for a 3:00 am shot and 7:00 blood draw, but no. grrrr.  So if you are out there not sleeping well tonight just think about getting 2 pokes along with hourly vad checks and monitoring.  Ya know, she is so dang tough she will probably sleep through most if it.   Really I can't complain.  When I look back at pictures from July 4, she is doing wonderful.   

 

 

 

 Lindsey and Chloe.  Chloe finally came back from ICU and has been on the Berlin for about 6 weeks.

 

 

Sept 23, Sunday, Wacky 6

Very little to report. She is acting great and still has the pvc's and V-tachs.  A few Dr's still think she should be in the ICU for IV treatment and observation, but her heart failure doctors still have us here.  If they do have us go down they will have to give Stacy and I a dang good reason why.

Had a nice lazy Sunday, church, walk outside, ate in the Sabroto room, and played Wacky 6 as a family with Denise, our nurse.  It was pretty wild.  We have some really good nurses taking care of Lindsey.  She seems to have the same 9-10 nurses (Kim, Nicole, Shanon, Heather, Denise, Marisa, Cristine, Jen, Patrice, and someone else) and they all take an interest in Lindsey. I think she has taught each one how to play Wacky 6.  Even tonight when I got here at 10:00 she and Cristine were giggling it up with the cards.  I had to break up the party and put Lindsey to bed.

Lindsey was able to Skype with her primary class at church. She sure enjoyed that.  We all enjoyed that.  Next up is Mrs Molly Smith and her 3rd grade class.

Most of her pvc's and V-tachs (the dangerous ones) happen at night.  Here is a good night.

Sept 22, Ward Party

11:40 pm
Another par day for Lindsey. Doctors still flirting with sending her to the CVICU with all the pvc's, and V-tach's, but not today.  She is still having the crazy heart beats, but is also feeling the VAD well, good attitude, and took several good walks (which is why she is still on 3 West).

Sierra had her friend, Nori, over to the RMH for a little birthday party. Nori is a good friend from church who also goes to Jordan.

 Had fun skyping today.  That sure lifts Lindsey's spirits.

We were very impressed and humbled by Aunt Bonnie's story regarding a donor family in Utah. I can't imagine how tough that must have been.  What a tough situation to be in. 

We went to the church party tonight.  That was fun to mingle and get to know some of the ward members.  But when we are both away from Lindsey it is hard to really relax and let go.  Always wondering how she is doing. Is her VAD filling? How is the RV function? Any V-tach's? Are they sending her to the ICU?  Did she go on a walk? How is her tummy feeling? Any fevers?  Any clots?  Any of the other stuff? It is really hard to not worry and just have faith.  We HAVE to be positive and upbeat around her! I honestly don't know how Lindsey can be in such good spirits sometimes.  I know I have said this before, but she NEVER gets a break from this stuff.  Dragging around the Berlin, the pokes, the monitors and alarms, the tube in her nose, the constant inching of the cannula sites, the hourly checks, the burden of eating, it never goes away.  Sometimes I am so impressed with her attitude.  If she wants me to stay here with her, then dadgumit I'm going to stay.  Like we all say now, 'We are one day closer'. I just pray Lindsey can hang on in such good physical and emotional strength until the Lord has prepared the donor family.

I still can't thank you enough for your sincere prayers, thoughts, concern, love and support.  It is definitely a strength to Stacy and I.

Sept 21, For now, she stays.

9:30 pm
First of all, we still don't know how to adequately thank our friends back home in Oregon, family and friends in Cache Valley, and friends everywhere else.  We enjoy and gain strength from every letter and posting to our blog.  The continued generosity is still very over whelming.  It is such a support to Stacy and I and the kids to have the family and friends we do.  We long for the day when we can return to our home in Eastern Oregon. Thank you very much for your sincere prayers, comments, love, gifts, and support.

So we had quite a scary roller coaster this morning. Of course the Berlin alarm went off several times last night. That's what I get for mentioning it last night. At 7:12 this morning she had a small run of the V-Tach, which are irregular fast heart beats.  These are the dangerous ones.

At first they told us Lindsey needed to go back down to the CVICU, start a picc line and start the IV Milrinone.  This is the heavy duty IV med that helps with the squeeze of the heart.  There were a lot of tears and emotion in our room.  Lindsey knew what that meant and didn't want to go. It really broke my heart.   Remember we are 'only' concerned (yah right) with the right side of her heart (RV), the left side is supported by the Berlin. The RV's job is to receive blood from the body and pump it to the lungs and then to the left side where the Berlin pushes it on from there. If the RV fails then the lungs don't get blood and the Berlin VAD pump doesn't 'fill' with blood.  That is why they check hourly to see if the VAD is filling.

Later this morning Doctors Yeh and Ashwin, heart failure doctors, came by to discuss all this with us. Since Lindsey looks and acts so good, meaning she is walking and exercising, breathing okay, keeping food down, no tummy aches or fevers, no swelling in her feet, they don't see the need to pull her off the 3rd floor, start a picc line (subject to infection and fevers) and start her on a heavy IV medicine. 

So for now, she stays. Back to school, PT, etc. They will watch and monitor the pvc's, pump alarms and v-tach's.  We support Lindsey and pray for her strength, the Dr's wisdom, and the donor family.  We were all very relieved to be staying!  But this just shows us how fragile this situation is. It really wouldn't take much for her to end up in the CVICU on a 2nd Berlin pump to support the right side. May the Lord bless the Drs with wisdom.

Hi! lyndi, how ar you doing are you haveing fun ther. I miss you Bingham family alote.

Sept 20, Thursday, Sierra's birthday

Kept pretty busy today on Sierra's birthday.  Stacy made waffles for Sierra's birthday breakfast. She then volunteered at Hunters school and went shopping.  I took Lindsey to school then I went back to the RMH to do some work. After school Lindsey went to PT. In PT she did push-up exercises and played Just Dance on the wii. The therapists say they rarely have a patient on the Berlin as active as Lindsey is.  That is great! I got some good tax work done then took Megan to her first volleyball game against JL Middle school. She did awesome, had some good serves and hit the ball a few times.  The team is big so she will have to work for playing time. She is up for the challenge.

This evening we had a birthday party in the Sobroto room on 3 West.  We invited 3 other families who we have met and who have kids with heart issues/failure.  The Sobroto room was rockin' with 11 kids playing and blowing off steam.

Can't complain about Lindsey.  Whatever med and pump adjustments were made and/or whoever out there has been praying for her, must have paid off. Her Berlin hasn't alarmed for over 24 hour, her VAD has been filling (for the most part) and her PVC's aren't extreme (definitely still there though) . Having said that, hopefully tonight will be just as good.  Thank you for your prayers!

Last night I had my ear plugs in sleeping. When I finally woke up at 1:20am to Lindsey yelling at me, she was unplugged, out of bed, and trying to push her Berlin into the bathroom doing the 'potty dance'.  She chewed me out for not waking up when she needed help going to the bathroom.  So the ear plugs really work, what can I say (at least that is my excuse).

9:37pm. Right now she is itching to go on a walk.  She has unplugged herself and prepared the portable monitor for the walk.  She has checked the leads and turned on the monitor. Her mask is on and "Dad, I'm ready to go". Later 

Our teenager in her new outfit

 Birthday Breakfast

Megan's first game

 Dr Ashwin doing 20 pushups. If Lindsey has to do them in PT, then the Doctors have to as well.

 Stacy all fired up about the Safeway cake for sierra. We had candles but couldn't light them in the hospital.

 

 The Sobroto Room

 Some of Hunter's friends

 Time for Bed!