July 31, 'Enduring to the End'

11:30pm.
Hopefully the 'excitement' is behind us and we now 'Enduring to the End'. If you are thrill seeker and looking for drama, you're not going to get it here, at least not today.  She seems to be really stabilizing.  Each day a little stronger.  Still not eating, but they have gone up on her feeding tube and her tummy is tolerating it well.  They continue to make small adjustments to her blood thinner, but nothing major.

Lindsey's field trip today was to the gift shop on the 1st floor to spend her tooth fairy money.  She bought some cute earrings.

They did switch out the Berlin Heart for another one.  The battery was getting low enough they didn't want to take any chances.  There was a lot of people in here for the switch and Lindsey was getting nervous (so was I), but they were just here to watch.  It was just like switching an air compressor hose, even Adam Kerns could have done it. 

Enjoyed visiting with Shawn and Trista. Shawn had his biopsy today and did great.

We (mostly Stacy) is trying to figure out school for the kids, birthday for Megan, and other stuff. I am probably going home this weekend with Sierra and other kids.  Sierra has trek next week and we want to get her home for that.

I asked Jen, one of the transplant LPN's more about the transplant process. How the donor is identified, how this hospital is contacted, and the actual transplant process. Very interesting.  When it's not so late I will share it sometime.  Give you something to look forward to.

Chin hair is getting ugly but not braiding it.... yet.

 Field Trip at the gift shop

 Switching out the Berlin for a fresh one.  The old one gets shipped to Texas for servicing.

Thanks for the shirts!  

July 30, A little baseball on the 3rd Floor

10:00 pm.
There really isn't a whole lot to report these days. Rounds are very short with no real changes made. They are adjusting Lindsey's blood thinner medicine a little bit. Her blood count is slowly coming back up from 21 to 26. We will take that. She is getting stronger and stronger. Today she played baseball with her brothers and sisters for physical therapy. Of course, it was using a beach ball and plastic bat. We were really missing our spacious front yard that we play baseball in. This worked though.

 Jason slept with Lindsey last night and it is my turn tonight. Sunday she lost another tooth and so she put it under her pillow tonight. She is going to make this hospitalization work to her benefit. Maybe they will let her have an outing to the gift shop with what the tooth fairy brings her. Here is to a restful night for everyone!! The wireless connection is not working so well on Jason's computer. So, hopefully I can add pictures of the family playing baseball tomorrow.

July 29, A Lazy Sunday

11:15 pm.
A great lazy Sunday. All of us except Lindsey went to Church, then enjoyed the day together here at LPCH.

Lindsey continues to improve her strength, energy, appetite and attitude. Hunter had the brilliant idea of no electronic devices on Sunday, no ipads, ipods, kindle, or other gaming devices.  He wishes he could have taken that back. All day they have wanted to play with their toys but mom has held the line. Somehow they survived.

Had the first Sunday meal together since May in the Day Room down the hall. We had lasagna and salad. The people here in Palo Alto have been so kind to us in providing meals. It was so neat to eat around the table together and pretend we were in Oregon.  Lindsey even took a few bites. 

Had a fun treat tonight when Trista and Shawn Stockwell came in from Alaska.  Shawn was waiting for a heart the same time Sierra was.  He received his heart 4 years ago.  He is here for annual testing and treatment.  We sure love those guys. 

We are getting to know Kade and Stephanie Thomas from Adrain more every day.  At best they are going to be here a month with their baby Tristen.  She is still in the ICU on the vent. They seem to be handling the stress very well.

All in all, we are in the best spot we could be.  She is doing well and is ready for a transplant.  Once the perfect heart is prepared, she will be ready. It's been 39 days coming, but now we are ready to shave...

July 28, Day 38 on the list

8:45 pm.
Happy to report it was a very boring day. We like those. Lindsey made 4 laps on each of her walks.  She walked long enough to run the battery down on the Berlin.  She actually can't walk much longer than 4 laps because the Berlin needs to be plugged in.  That's a great problem to have.  The nurse said that most Berlin patience never get to that point. The only noise in Lindsey's room is Hunter and Gage.  The monitor is silent, no alarms going off, just the hum of the Berlin pump and the soft squeak of the feeding tube.  She looks and acts great.  Her attitude is much better, and she gets around on her own.  Her appetite is slowly coming back, up to 5 bites of food for the day.

Sierra came home from camp today.  She said it was "very fun". That's about all we can get out of her.  She must be growing up.  It is so nice to be all together. 

Stephanie and Kade's baby, Tristin, is still in the CVICU.  Their baby, who was born the same time Lindsey went on the list, has Hypoplastic Left Heart Syndrome and is still on the vent.  The baby has lost 2 pounds since birth and need to gain some of it back.  They have become good friends and we are sure pulling for their baby.

  

July 27, Time to bake

8:10 pm.
Lindsey is officially off all IV's! The only thing she took with her on her walk earlier today was her Berlin. That's unbelievable.  They stop her feedings through her tube for 4 hours a day. Mostly when she goes for walks so she is FREE of all IV poles. Today for physical therapy she made our family recipe of chocolate chip cookies. It is their tricky way of working on upper body strength. She nibbled on a little brown sugar and ate a chocolate chip and saved the rest for everyone else (so nice of her). We are getting better and better about sticking to her schedule. It helps a lot to have some order in her day.

 Jason and the kids just arrived After a 13 hour drive. Everything was great until the last hour with traffic, potty breaks and 'Are we there yet?'. We are ecstatic to see them. Jason brought some chard with him from our garden. They couldn't believe how much Lindsey has improved over the last 6 days. Amazing how 'at home' you feel when we are together. Maybe Sierra returns tomorrow and once again we will be all together. We have really missed her. All in all, things are amazingly well. I am so late on my update because we have been busy reading a book and enjoying the peaceful time. Sorry!

July 26, Day 36 On the 3 West

11:20 am, Thursday
Doing great! A whole bunch of people at rounds this morning. The CVICU team was signing off to the 3 West team. We are now in our nice 3 West Room 3241. We are really excited to be up here. We don't have to leave for report, we can eat with her in her room and (her favorite) we can sleep with her in her room. She was able to get rid of several lines this morning. Now all she is hooked up to is her heparin drip and her feeding tube. She actually was able to put a real shirt on today. She will probably be off the heparin in a couple of days, leaving just the feeding tube and Berlin. Every day her mood gets a little better.

Upon leaving the CVICU, it is hopefully the only time we will say, "Hope to see you soon." Meaning, the next time we see them will be with her new heart, not complications. We are really ready for our family to be back and missing them terribly! We are definitely more equipped to handle everyone in this bigger room. Also, with Lindsey going to the playroom, now all the kids can go together.

Small set back. After the transfusions she had a few weeks ago, they re-run the anti-body test to see what her levels are.  They came back positive meaning now they will need to test the donor heart for the same thing.  Before she was negative and the donor possibilities were wide open, now they will have to be a bit more selective on the type of donor.  In the past, Sierra has had a few complications with the anti-body rejection.

We haven't had any news from Sierra at transplant camp, but I am sure she is having a ball!! Looking forward to seeing her on Saturday.

 Dr Bernstein (Heart Failure Dr) and Dr. 'Katz' Meada.

 Katz is the Surgeon who has done all the work on Lindsey and Gage and will do the transplant

 She took 1 bite, which was quickly captured on camera

Bernstein and his girl.

She is there! 3W Room 3241

 

July 25, Answers to prayers...1 day away from 3 West

1:20 pm, Wednesday.
Lindsey is still doing amazing! Two teams rounded on her this morning, the CVICU Team and 3 West team. A total of 11 people standing outside her door. They round together so everyone is on the same page for her care. They started report with talking about whether to continue the medicine to help her sleep or not. Dr. Bernstein interrupted and said, "Isn't this great that she is doing so well, that we start off worrying about her waking up a few times during the night." That says a lot about how well she is doing.

They are going to take her off her morphine. They have been slowly weaning her off of it. Little bit by little bit she hasn't been needing it as much. Their goal is to be entirely off the morphine by tomorrow. That is two more tubes off of her. The plan is upstairs to the 3rd floor (3 West) tomorrow.

Lindsey lost her tooth yesterday. She woke up this morning and the tooth fairy had come! Apparently they pay a little more for teeth in the hospital. We were greatly relieved that the fairy found her. Sometimes her sisters have had to write notes to remind the tooth fairy. We also had a fun visit from our friend Art the Clown.  We met Art six years ago at the RMH.  He is a retired dentist who loves to go around and bring smiles to children. Lindsey really enjoyed that. Now it is back up to the gym for physical therapy.

Art the Clown.

Notice the daily schedule her mother and nurses came up with to help give her a routine.

We are starting to see her cute personality come out now and then, but she is still pretty cranky and fights the walks.  On her morning walk she made it 2 laps around, but not without kicking and screaming.


Daddy here. I have thought a lot about prayer, hope and faith lately (go figure).  When we think the lord doesn't hear and answer prayers consider the prayers that have been answered so far. Everyone of these items we have specifically prayed for and we know many others of all faiths have done the same.
1- She would survive the catheritazation (back in June before going on the transplant list)
2- Blood clot in her heart would stabilize
3- Internal bleeding would stop
4- Her right lung would improve
5- Her right side of her heart would stabilize
6- The Berlin pump changes would be successful
7- Doctors are able to catch and monitor the clots forming in her pump
8- The doctors use wisdom in balancing our child's health
and that is just to name a few....
I thank God for the incredible support of our community, family, friends, church, employer and others.  We are truly a blessed people. I am so grateful that I have the hope and faith that God hears and answers prayers. Maybe this was all a coincidence, but I like the hope that maybe there is a supreme being that looks over us. I feel so horrible that Lindsey has to go through this. It's not fair, and frankly it stinks. I would do anything for her. But the lives she is blessing, including her Dad and Mom, and those around the world is incomprehensible. I know she will pull through this and will be a stronger person for it. I love my Princess, I love all my children.

I still continue to pray for that donor family out there somewhere. God bless them.

July 24, Back to the gym

12:45 pm. Stacy here.
Lindsey is doing really well. She slept most of the night last night. She woke up anxious around 3 am. I had a good talk with her yesterday about what makes her anxious at night and made some plans to help her cope with this. We decided to try reading to her over the phone until she falls asleep. We only have a couple more nights in the ICU (I hope) and then we can sleep in her room with her on the 3rd floor. I instructed the nurse when I left of our plan so we were all on board.

So, at 3:30am I get a "You have a new voicemail." I quickly called the ICU and she had just fallen back to sleep. Needless to say, my phone failed me. She slept well the rest of the night.

Today she went up to the physical therapy gym again wearing pants and gym shoes and played the Wii. That got some smiles out of her. She played tennis, bowling and swords (Hunter's favorite). She walked all the way there and back! A little pooped now though.

Nothing really to report in rounds this morning. They are going to take out her arterial line this afternoon. I told Lindsey before report to smile real big and bat her eyes at Dr. Bernstein and ask him if she could get that out today. She shyly asked him, after much encouragement from her mom and nurse. He told her she doesn't need to be shy towards him and she can ask him anything. Instantly she piped up and said, "well then, can I get this ,and this, and this out too."

Meanwhile back at the Ranch, Megan and Hunter went in for TB testing.  I guess they need that before they can start school in Palo Alto.  Jason enjoyed seeing both of these kids poked. These 2 have had nothing more than flu shots, can you believe that.  Lindsey and Sierra would have loved to see them get poked.  Jason called Lindsey when Hunter was getting poked and she talked him through it.  He was screaming and she really perked up.  It was quite entertaining to the parents.

Hunter getting all worked up over a little poke.  Daddy is actually enjoying this moment.

 Lindsey talking to Hunter while he is getting poked.

 At PT getting ready to 'work out'

 Playing the Wii with Linda, she is a funny nurse. 

A few pictures we received from the producer

July 23, Meanwhile back at the Ranch....

Hi Lindsey, Stacy and Sierra
Thought you would like to see how things are going back home.
The garden is doing well and it is really warm.
The house is kinda lonely without you and Mom here. 
Love you and see you soon
Daddy

 Gage out digging up weeds

 Gage looking for raspberries

 Some pretty flower by the front door

 The garden in all its glory. 

 Megan showing off a back flip she learned from the Yecks. (Notice that fence in the background, wow)

 Another glorious garden photo (How about that chard)

 Gage-a-realious asking, 'Peas Daddy, Push me Daddy, peas!'

 Missing you on a Sunday afternoon

July 23, The Today Show....Ready for our close up?

3:50 pm.
Well it is really different seeing yourself on national TV. Glad we had the kids there to make it adorable. Lindsey liked seeing herself but thought she sounds different in real life. Gage's belly looks just as cute on TV and boy is he proud of his scar.

 Lindsey is doing great!! The only concern they have is, she has a really low blood count. Normal would be around 35 and she is 23. If you have ever been anemic you know how tired and weak you feel. Normally they would treat this with a blood transfusion. However, being on the transplant list you want to avoid transfusions. With each blood transfusion you receive the antibodies that are in that persons blood. They want as little of those antibodies as possible for a transplant. They have her on iron and another medicine to help stimulate red blood cell production. BUT, they are still drawing about 10-12 ml of blood a day checking labs. So our big thing today is consolidate. The doctors were discussing how they can consolidate the blood draws so there will be less blood drawn for labs daily. They also talked about what IV's they can discontinue. Hopefully in the next few days she will be rid of most of her tubing. I know she will feel a lot better if she can drop some of those lines.

She went up to the physical therapy gym and played some fun games. She did great and tolerated the walk there very well.  She is still struggling at night.  She called me at 11 pm and 2am crying and wanting someone.  She also called her Daddy back in Oregon at midnight and talked for 45 minutes.  She is tired of the route and sometimes just wants her mom or dad regardless of the time of day or night.

Funny story. Lindsey is funny about her ipod. She is very possessive about that little devise.  She does not want anyone playing with it especially Megan or Hunter.  Whenever they get on it, she gets ticked off and changes her password and doesn't want anyone to know it, even Mom and Dad.  We have very lovingly explained to her that Mom and Dad WILL have access to her ipod and WILL know her password.  We have also had to swear an oath that we will never reveal the password to her siblings!

Sierra is off to transplant camp. She is nervous and excited all at the same time. I think it will be an amazing experience for her. Jason is home trying to figure out where I put everything (i.e. birth certificates, social security cards, immunization records, etc) for all the kids. It is amazing how frustrating it is to not be right there and just get it for him. I am trying to be patient on the phone, because I know he is trying so hard. Apparently I need to get more organized. I feel for him and the crazy few days of trying to prepare for a long stay here with everyone. I love you and appreciate the amazing person you are Jason. Good luck!!

July 22, Jason and kids went home

10:30 am. Stacy here.
Jason made it home with Hunter and Gage at about 12:30 last night. A long drive back from Boise. Megan returned home with Hilary yesterday afternoon. So, here we are again all apart and already missing being together.

Last night when Sierra and I took Lindsey for her evening walk, it was really boring. We didn't have Hunter and Gage running ahead and opening doors and hiding for us. At least it will only be for a week at the longest, unless I can give them a really good reason to come back sooner! Lindsey slept until about 2am this morning and then on and off after that. Dr. Rosenthal was in this morning and said, "The pump looks ridiculously good. You should put a bow on it." We like ridiculous, maybe we will surprise him with a bow on it. Still rumors of her going up to the 3rd floor early next week. They are going to start putting her on oral meds so we can start taking away all the IV lines hanging on her. Yeahhhhh!!!! She smiled big for that one. All steps in the right direction.

Sierra went to church with Bob and Kaye Paugh today. That will be good for her. She can start making friends with kids she will be going to school with. School starts here August 13th, we need to start planning for that.

Jason walked me around our yard this morning. Giving me updates on our garden and flower beds. Oh how I miss it. Lindsey and I have been here for over 2 months. We are missing out on my most favorite time of year. Pulling weeds, mowing the lawn, canning, etc. That is okay though, we have many more summers to look forward to! Besides how many opportunities do you get to vacation in California for longer than a couple weeks.

It sounds like many people at home have been taking care of everything. Mowing the lawn, weeding the garden and chopping and stacking wood for us. They even left some logs for Jason to chop for his stress reliever. Thank you ALL so much. We really appreciate it. Thank you for the cards, fun packages and words of encouragement. We would love to thank each person individually, but there have been so many we can't possibly keep up. We are also very appreciative of so many peoples donations. We are left VERY humbled and speechless at so much generosity. Thank you.

July 21, Josh and Tara here

12:15 pm.
If you are like me, sometimes you just need to know.  Even if there is nothing to report, then you want to know there is nothing to report. right?

Well, things are still in the right direction.  They turned off the dopimine last night and turned off the milrinone this morning.  That is huge.  If her right heart can handle that, she is bound for the 3rd floor. 

I was with her last night from 11 pm to 4:30 am. She still has occasional / intense tummy pain.  Not sure what it is, but she was pretty miserable last night.  But this morning we are 'all good'.  Even in a good mood.  See how long that lasts. Even now her tummy hurts a bit. 

Right now we have Josh and Tara and their gang here.  Josh had a cpe course in San Diego and now they are here for a quick visit.  Tell you what, Ryan, Landon, Hunter, and Gage bring a LOT of energy to the CVICU and the RMH.  Had to give them a good talkin' to about the Berlin and what would happen if they pulled out the air hose between the pump and her.  It would get really exciting around here.

I'm heading home today with the boys for a week.  She is doing great and this is our best chance to go home for a bit and check in.

Still nervous about the Today Show broadcast at 9:00 am on Monday.  There will be something, sweat, slobber, a booger, an 'um' or something. It is what it is. 

July 20, Others in need

1:45 pm
This time I'm speechless.  It's shocking what a horrible person can do to innocent lives. All of a sudden, our problems doesn't seem that bad.

Lindsey's Today Show broadcast was postponed due to news coverage of a shooting in Colorado. A gunman opened fire in a theater and killed 12 people, and injured many others.  What a senseless evil act. Lindsey is doing great, those are the people that need our prayers.

Lindsey is having a good morning.  She is still pretty grumpy and tired.   They took out the last chest tube. She wined about it, but was time for it to come out. It hasn't drained in a couple of days. She should feel a lot better with that thing out.  Went on her morning walk and went a little further than last time.

The doctors didn't round until just now.  They had other cases that required their attention.  It's nice to not have them hanging around our door as they have in the past. Her Berlin pump is currently clean of clots and her right lung is doing better. They are making small adjustments but it's all good.  Today we can worry, pray for, and support others in need.

Weeks ago we met a couple from Adrian, Oregon who has a new born baby with a heart condition.  The baby has the same heart disease Shawn Stockwell from Alaska had.  The doctors are spending a lot of time in their room lately (ugh).  Their baby had to go back on the vent. Very hard on the neat young couple.  We spend a lot of time visiting with them and worrying about each other's kid.   Sometimes there isn't good news to report. Today was one of those days for them.  As bad as we want good news, there just wasn't any.  Sometimes you just have to hang in there.

For Lindsey's 2nd walk, she made some slime with the therapist and went on a short walk.  She is still tired and cranky.  We may still go for a walk to the playroom later.  Right now we are playing Farkle, a dice game, listening to Cooler than Me and Crazy.  We are getting closer to moving to the 3rd floor, just need to wean her off the dopamine.

Gage and Hunter went with Liz Niccum to the Discovery Museum in San Jose.  They should have fun.

For her 3rd walk, we went to the playroom and played the game of Life.  Lindsey perked up a little.  Whether she likes it or not, she is getting stronger.  It has been 1 month now on the list. Bring it on.
Today we can morn for others, we are good......

Chest tube on her right side ready to come out.

 Making slime. Lindsey not yet willing to get involved.

July 19, Day 30, Playroom

5:30 pm.
Stacy had a sleep over with Lindsey last night. She is doing great, but still on the cranky side.  In fact we haven't seen her peppy self since yesterday morning. Lots of tears and pain. She mostly complains of her dripping nose, pain around the chest tube, and the weight of the 'stuff' hanging from her  (I still don't blame her). 

We have been on 2 walks so far. 1st one this morning was a full lap, like the laps of old.  We were all excited about it.  The 2nd walk was the field trip up to the 3rd floor playroom.  You would think she would be excited about that, but her energy just isn't there yet.  We still don't comprehend just how weak she really is. You could see tiring out just watching the other kids play. Lindsey and Megan did play a little game, but other than that she just watched, slept, cried and wiped her nose.   She is getting there, everyday she can go a little further.  By the time we came back to her room she was an emotional wreck, everything was sad and she didn't know why.

Dr. Yeh just came in and her Berlin is currently clean of clots.  Every hour our lives pause as he gets out the flashlight and mirror and checks the devise.

Kevin Paugh, Bob's son and police officer, came by with lunch and took all the kids out to show us his awesome weapons.  He has some pretty cool stuff. Kids sure enjoyed it.  Lindsey wasn't up for that though.

Lindsey's arterial line is starting to fail.  Hopefully they can rescue and keep her from needing to start a new line.  That will be kind of a big deal.

Garrity and Hilary are leaving today. Bummer. Stacy and I have been figuring out what would be best for our family.  Megan will probably go home with Garrity and Hilary.  Give her some time home with her friends. Hunter, Gage and I may go home Saturday. Either with Josh and Tara, or fly.  I would like to go home just because, even if it's only for a few days.

Sierra will stay her with Stacy.  She has Transplant Camp next week.  It's at Camp Dorthy wherever that is, but Mary Byrge says she will have fun.  There will be nurses to take care of her meds.  But hey, she has been on her own for weeks now anyway.

Regarding the Today Show.  According to Robert Dicks, the media guy here at LPCH, our segment should be shown at 9:15 tomorrow Pacific and Eastern, I think at 8:15 on Mountain time.  (this is crazy!)

 Dr 'Katz' Maeda. The Surgeon who did the Berlin, chest tubes, Gage's pacemaker, pump changes (4 or 5 so far) and Lindsey's future heart transplant.

 Field trip to the 3rd floor play room

  Garrity saying her good-bys

July 18, The Today Show

9:00 pm
What a day, and glad it is over. After the clot scare, and that was scary, Lindsey went on a good walk this morning with the therapists and did a great job. They set up a scavenger hunt for her to look for clues as she walked.  She was sure in a good mood.

Today was the day for the interviews. We have agreed to have Keith Morrison and Sandy Cummings from NBC and a camera crew come here to do a Today show 3-4 minute clip on Lindsey and our situation.  Yes very crazy.  They acted very nice and not pushy.  They interviewed Dr. Rosenthal for 15 minutes, videoed Lindsey on her walk,  then talked to Lindsey and the family right in her room.  She had agreed to it and did a great job.  It was pretty funny, they gave her some lasix right before the interview and as soon as her interview was over, she had to go! We gently pushed Keith and the gang out so she could go pee.  The relief on her face was priceless.  Keith took us to lunch then we walked over to the RMH.

Garrity and Hillary stayed with Lindsey as Stacy and I were interviewed, with makeup and everything  (makes talking in church look pretty easy). The interview with cameras rolling went on for about 2 hours. We talked about the whole story from Sierra to this mornings clot. Hopefully it was appropriate.  I am scared to see what we will look like on the Friday morning show. When it was over we called Lindsey and she was ready for us to come back.  Lindsey has had one of her best days, but now she was ready for her Mom.  Stacy came over and I stayed with the kids.

To add to the chaos, the RMH moved us from room 201 to 204.  Room 204 is a bit bigger with an extra bed.  It is the same room we were in the whole time with Sierra. So before and after the interview we were packing up, cleaning up, and moving down the hall.  Sure nice to have Garrity, Hillary and Bethany here to help, they were golden.

The camera crew took a few more pictures of the kids in the RMH playroom.  It was pretty funny watching Gage not cooperating with the camera guy. He was trying to get the 'perfect' picture and Gage was busy playing with toy golf clubs.  It really was funny.

After that, they thanked us and went on their way. To add to the day, Lindsey started getting another clot at 4:30 and by 7:30 they were changing the pump (take a deep breath).  And yes, they did get it changed before the clot disappeared.  I think that is the most stressful part of the Berlin, the risk of clots.  The docs can work with everything else, but a clot dislodging and going somewhere they can't control. 

Right now they are doing a dressing change. She is doing well, with Mom and Sierra standing by.  We want to get her on a walk, but not sure if it's going to happen tonight. Lots of Ativan on board. She is still asking when they are going to change the Berlin.  It is kind of funny.

Thanks for your comments. Don't forget to let us know who you are.  We are not sure who 'M' is.

Getting her hair washed for the big day 

My College buddies should get a real kick out of this. 

 Stacy missed a spot on her makeup

 Kids in the play room. Notice Gage NOT participating with the other.  The guy was begging him. 

This is still unbelievable!