June 30, 11:00pm, Unbelievable!

What a day. Lindsey is actually doing well... I guess. The Berlin is pumping like crazy. They have her lightly sedated so we are able to talk to her and hold her hand. She wants a drink of water, but the ventilator and other hoses are in the way. There are a lot of stuff going into her. I see 7 separate IV's, 3 chest tubes, hose in her nose, ventilator, some other hose draining fluid out of her lungs, wires coming out of her chest, and I think that is it. There is a nurse here full time watching her.
Scott and Tanner Hayhurst came by. Tanner had a basketball tournament in SF. That was nice of them to come visit. You could tell it was hard for Scott and Tanner to see Lindsey that way. Then, out of the blue, Greg and Erin Ripplinger come walking down the hall. They just came over to visit. Very nice of them. They will be here again tomorrow. Gage and I flew in today. We left our car at Hayhurst in Boise and flew on SouthWest. We got here around 4:00pm. Stacy was asleep from her long night before.

Your not going to believe what I am about to tell you. Gage had been acting funny for the last few days back in Oregon. Low appetite, tummy aches, low energy, and very winny. I have been taking his blood pressure and his pulse sounded strange. While I was home I called and told Stacy who then talked to the Drs. I brought Gage with me to keep in eye on the cute little 'Gage-a-real-eous' (his nickname). The nurse that is taking care of Lindsey took his blood pressure and pulse and told us we should have him formally evaluated in the pediatric ER. Long story short, Lindsey is in room #2337 and Gage in in room #2335! No joke. He has a 'Complete Heart Block' meaning he has a very irregular heart beat. Unbelievable! They are going to watch him very close tonight. He has an IV, and an external pacemaker. They have also marked his neck in case they need to do an internal pacemaker through his neck, kind of like a catheritation. Basically, he has major heart problems that are probably caused by his Cardiomyopathy. We haven't talked much about his heart problems because of our Lindsey Lou, who is right over there on the Berlin Heart. Unbelievable! So Lindsey and Gage are next to each other in the CVICU. Unbelievable! I am so sick to my stomach right now. When Dr. Axelrod (very nice guy who looks like Waldo) was showing how much his ekg had changed since June 8 I almost fainted, I was light headed and just couldn't believe was I was hearing and seeing. In my opinion, we are going down the same route as Sierra and Lindsey, mark my words. What a nightmare. Right now they are doing an echo to look closer at his heart.  I really don't want to know the results. They did a chest x-ray, but again I don't what to know, I just don't. Don't forget, Lindsey is STILL over there on mechanical support.

Ya know, I always thought that the Sierra events 6 years ago with the 'end' of that trial.  Maybe, that was preparing us for something bigger.

Stacy is still strong as can be. What a woman.

 You can see the Berlin Heart at the bottom on the striped towel.

Scott and Tanner Hayhurst.

 Gage getting an echo on the right. Stacy with Lindsey on left. Still - Unbelievable!

 Gage with Dr Axelrod on the right.  Big white pad is for the external pacemaker.

 This is Kerns' cabin where my family is having a family reunion this weekend.

June 30, She is in...

11:30 am.  She is in being fitted with the Berlin right now.
Lindsey has had very long night and a really rough 18 hours. She started vomiting again yesterday morning and became more frequent as the day went on. Our team of transplant doctors (Rosenthal, Bernstein and Yeh) had a special meeting outside of Lindsey's room to discuss her care. After about 45 minutes, they talked with me (Stacy) about how her condition is worsening and to stay ahead of the game it is time to put her on mechanical support. Just as we had seen Sierra do, the plateau before the quick plummet. I signed papers, they talked to Lindsey about the procedure and answered our questions. Lindsey said, "So it is like getting a heart transplant only I won't have the heart? Will I be asleep? Okay. As long as I'm asleep, no problem".

As the night went on her vomiting and nausea got worse. She would drift asleep for a few minutes then start tossing and turning due to her stomach hurting. Then she would dry heave and dry heave so hard she would have accidents in her pants. When she finally did get some vomit it would be bloody from her GI tract being so irritated from all the vomiting. I remember a very similar night about six years ago with Sierra. The next morning Sierra was placed on the ventilator and her heart came the next day. Who would have thought that I would be reliving the worst night of my life.... again. "Wake up, please wake up from this nightmare." Lindsey left to go onto the Operating Room at 8:30am with her blanket next to her. I kissed her and waved good-bye and told her I loved her. Then after she was gone out of sight I cried and cried hard for the first time since May 18.

These are pictures the morning she went in.

June 29, Berlin consent has been signed

9:45 pm.
Stacy has signed the consent for the Berlin Heart.  Lindsey will go in tomorrow morning.  Still throwing up every 1/2 hour. It will be a very long night for all. Stacy found Catherine Stucki to help find someone to give Lindsey a blessing.  She received one back in May, but things are different now. I wish so badly I was there right now to give Lindsey a blessing, but I need to trust and have faith in our good friends in California.

Talked to Ripp the other night.  He was a good friend from my college days.  I am so grateful for the love concern and sincere prayers.  Haven't talked to Stacy for a couple of hours.  Hopefully Lindsey can hang on.  Interesting this is the exact same situation Sierra was in.  Thought I would never have to live that again.

Here are a few cute pictures of Lindsey from the past.

June 29, Friday, The time has come...

Been throwing up all day. Doctors said I need to come down.  Gage and I are flying out tomorrow (Saturday).

Taking Gage to keep an eye on him and his increased heart medicine.  He is really acting weird, heart rate really slow.  Berlin Heart or other mechanical support probably tomorrow for our Princess.   Please God bless my child.

June 29, Still in Oreg but need to get down there.

She did eat 80cc of the Oreo milkshake last night. She called Stacy at 2:30am with tummy aches.  Vomiting started this morning and has continued till now 11:00 am.  Doctors came by on rounds.  They say her other organs are holding on enough to postpone the Berlin Heart a little while longer. Not sure if that means days or what. She did go on a small walk, but was still throwing up.
Mary Burge, our social worker, is coming in to show Lindsey pictures of the Berlin Heart and start preparing her for it.

There was a teenager down the hall who went in for a transplant this morning.  She had been on the list a few days. Maybe Lindsey will be next. One can hope.  Stacy is being very strong and supportive, but I need to be getting down there. Probably take Megan and Gage this time.  They will be good for Lindsey.  Hunter, no way! Sierra is good for Lindsey, but she needs a break too.

On another note, something is not right with Gage. Very tired, lethargic, tummy hurts, no appetite, and very little energy. I want them to take a look at this little guy when we get there, just to clear my worries.

Still praying for a heart, her appetite and tummy, and the Doctors.
Attached are 2 cute pictures of Lindsey.
1st is when she had her hair put into cute braids a few days ago (I think).
2nd is when she just took the braids out.
Love you Princess

June 28, Phew!!! Out with that tube!

6:00 pm.
We had a long night last night, but better as the day went on.  Lindsey fell asleep last night at about 11 p.m. I went back to the RMH at 11:30. Lindsey called at 1 AM complaining that her throat hurt. She said she would try some ice chips and call me if that didn't help. Know that the entire day she had barely talked or eaten and to go on walks were miserable for her. At 3:30AM the nurse called me and said Lindsey was asking for me. Lindsey only asks for us to be there when she is not feeling well. She vomited shortly after I got there and was miserable. She finally dozed off with me holding her in the bed at 4:30 or 5. Of course my mind starts wondering if we are at the point of mechanical support. She woke up at 7:30 complaining of her throat hurting and nausea. She ended up vomiting again after that. During rounds the docs decided that the feedings are too much and her body doesn't have the reserves to digest. So, out with the feeding tube! Lindsey was really nervous to have it out, but did great. Her dad called shortly after it came out. She brightened right up and talked more than she did all day yesterday. And, she hasn't stopped. The hospital showed the movie "Brave" for the patients. They even had an artist that helped make the movie come and draw pictures of movie characters for the kids. They also handed out bags that had "Brave "paraphernalia in it. That really lit up her day. The hope is we can get her to eat and tolerate food orally or we are looking at mechanical support or a new heart. I would rather the new heart first, personally. The next few days will tell.

June 28, Top 3 things to pray for

5:30 pm.  Lindsey did not do well with the feeding tube. She was throwing up this morning from the tube 'feedings'. They took the tube out this morning and she feels a lot better.  I talked to her on the phone and she was excited to have that thing OUT. The problem is she is still not eating, and hasn't for a few days now.  Dr. Bernstein said if she doesn't eat something to keep nutrient up then they have no choice but to go to mechanical support, (the Berlin Heart).  Lindsey was craving an Oreo milkshake, so Stacy rode her bike to the Stanford Mall and bought an Oreo milkshake.  Bernstein was saying if you give it to her in a shot glass size (small little portions) she may eat more, rather than presenting a 'Burger Bob style milkshake (which are very good).  Stacy and I have our doubts about her ability to eat anything.

So here is our top 3 things to pray for.
1)  A donor heart tonight!  A family is prepared to make the tough decision to donate life.
2) An appetite of any kind.  That her heart is stable enough to support some kind of food.
3) Dr. Bernstein and the rest of the team.  That they can be guided by the hand of God and know the best treatment for our Princess.

That's it, just 3 things.

Lindsey has been on the list since June 20, a lousy 9 days, and has been in the CVICU only 16 days.  Feels like forever....  My chin hair just isn't growing fast enough!

Thank you for your comments, love, and prayers
Jason

June 27, Day 8, Back in Oregon for a moment.

Gage, Sierra and I came home yesterday.  Strange being in the house, but it is good to be home for a little while.  Uncle Jay is bringing Megan and Hunter to Oregon.  Very nice of him.  I just wanted to be their Dad for little bit before I need to go back.  I am planning on heading back a week from today, but may need to go back sooner.
 
Lindsey is having rough few days.  She hasn't eaten much of anything and the walks are minimal.  Dr. Bernstein has come by a few times to check on Lindsey.  He is watching her very close.  Today's plan was just to watch and see how she does on the feeding tube.  I guess it was pretty dramatical inserting the tube, they had to do it twice before it took.  The first time it coiled up in her tummy.  They want the tube to go past her tummy into her intestines so she won't have the tummy aches and the 'full' filling.  Stacy went over and layed with Lindsey between 11pm and 2am.  But Lindsey slept for the most part.  Hopefully today she can eat something and 'ambulate'.

The doctor doubled Gage's heart med.  Need to watch him for the same things, tummy aches, vomitting, dizzy, appetite, or whatever.  Most of the time he is ok, but there are random times he says his tummy hurts, or doesn't want to eat anything.  This is all so hard to not stress out.

Our prayers are pretty sincere these days.  Praying for Lindsey's heart to hold on, for her to eat, for the doctors to make wise decisions, for her to be brave, for her to have strength to hold on,  for Gage and his med's, for Ruth Frieboes, for Ricki Anderson's family, and for the donor family.

On a lighter side, I told Lindsey I am not going to shave my chin hair until the transplant.  No matter how long it takes, I'm not going to shave it.  Hopefully it won't get to long and ugly.
Till next time.
Jason

June 26, Day 7, Time for a feeding tube

Stacy here.  I took Jason, Sierra and Gage to the airport this morning. So, here we are just Lindsey and I. So sad to see them go. Lindsey had another great day yesterday. It is amazing how our energy and optimism go up according to the good days. Like the doctor said at rounds this morning, "today is a good day for a heart transplant." We know we are on borrowed time right now. She really has little reserves left. Just like Sierra, she plateaus right before she plummets. That is why we say it would be wonderful to get a heart when she is "healthy." Today they are putting in a feeding tube (she is really excited for that). She will be fed at night while she is sleeping. She just isn't taking in enough calories to keep her body healthy enough for transplant. Well, that's it for now we are off for a walk. Jason, give the rest of our kids the love and hugs I ache to give them right now, but can't. Lindsey said the only thing she wanted when she woke up from her transplant was to have her whole family in the room. I agree!!!

June 25, Day 6, to 'Ambulate'

Lindsey continued to have an uneventful day. She took her 3 walks with 2-3 laps per walk.  Found out it is actually called 'ambulate'.  To take a walk is to 'ambulate'.  Still eating very poorly, only couple of bites per meal at best.  Today they are talking about putting in a feeding tube to help with some nutrient she so desperately needs.  The IV 'food' is ok for short term but not long term.  They may do that tonight and have it run during the night.  I don't have good memories of when Sierra had a 'hose-in-her-nose' (neither does Sierra).
Lindsey slept till 2:00 am then woke up with tummy pain.  She hasn't had a bowel movement (poop) for 4-5 days and they think that is what is causing it.  They have given her some stool softeners to help.  Anyway, I came over and slept with her from 2:30 on.  I don't know how anyone can sleep in those rooms.  There are beepers going off all the time, the IV's make funny noises, wires everywhere, the nurses are fiddling with her IV's, the other kid in the room was screaming about something, and somehow Lindsey slept through most of it. She woke up in a good mood and had her usual few bits of food for breakfast.
She 'ambulated' 4 laps today.  Gage, Sierra, and I would run ahead and hide from her. Playing hide-n-go-seek help make the walks fun.  We got her giggling pretty good a couple of times.
Ben and Angel Thorton came by. Ben was Sierra's heart buddy who received a heart the same day.  He has his biopsy today and is doing great. He was the tough guy who was on the Berlin Heart for 52 days. We sure love that family.
Today Sierra and Gage have heart appointments. Stacy will be taking them down in about a 1/2 hour.
Talked to Dr. Yeh about Lindsey's issues, mechanical support (Berlin Heart), the risks involved, and what Lindsey needs to do stay off of it.
Her lack of eating and tummy aches are a huge concern.   The more she doesn't eat the weaker her body will get, and harder the recovery will be post transplant.  That is why they are considering a feeding tube to run during the night.  Couple of items they are watching for, if she needs to go back on oxygen, or if she stops eating, or if she has more vomiting,  or she can't tolerate 'ambulating', then they will move towards mechanical support ie. Berlin Heart.  We all admitted she is flirting with all these situations.
The Berlin Heart has major pros and cons.  Most patient's health improves.  They eat more, go to the play room, gain weight. So why don't we do it?  About 30% of kids on the Berlin Heart have a stroke from blood clots formed in the device.  Also she would require blood transfusions, which will cause her anti-body levels to go up.  So even she would improve on the devise, the risks are huge.   Basically, the longer Lindsey can wait before going on mechanical support, the better.
Regarding her anti-bodies.  With her current low levels of anti-bodies, she could accept a wider range of heart organs.  She is not restricted based on her anti-body levels.  Apparently, that is not the case with a lot of kids.  If her levels were higher, then that would restrict the type of heart she could accept.  This test is new since Sierra's transplant, and of course I am way over simplying the doctor's explanation.
Still planning on going home tomorrow or Wednesday for a week or so. Just have to see....
Thank you for your continued sincere prayers for Lindsey, her weak body, her appetite, and her doctors.
Daddy

June 24, Day 5, Sunday morning

8:40 am, Not much to report. It is sure nice to have Sierra and Gage here.  Gage brings a lot of excitement to the CVICU.  Tummy aches have been minimal, but appetite still way low. Eating is such a burden to her. She did her 3 walks yesterday and did ok.  Gage and I would run ahead and hide, then scare her as she came by. 
Stacy and I notice that when she feels good you would think she is ready to go to 3 West (out of the ICU).  Then in a matter of hours she looks and acts so poorly you would think she is going on the Berlin Heart.
Still 'planning' on flying home with the kids on Tuesday, but this all depends on her status.  I would like to go home to take care of a few home and office issues, and have our kids together.
Leaving for church now.  Check back in later.

June 23, Day 4, About the same

Lindsey is staying about the same, I think.  Her appetite still stinks and has occasional tummy aches.  Ate a few bites last night, and still hasn't eaten this morning, and it's almost noon. Went on a 3 lap walk last night but over did it on the last lap.  After 2.5 you could see the energy just drain out of her.  This morning we went on a 2 lap trip, but didn't push for a 3rd.
Grandma and Grandpa Coleman showed up around 4:00 pm with Gage and Sierra.  Those 2 kids bring a lot of excitement to the floor.  Interesting we have the past, present and future heart kids here with us.  Gage had a lot of fun on the laps with Lindsey.
ReNae and Randy left early this morning for Utah.  That was very kind of them to bring our kids over.  Right now the kids are watching 'How to Train Your Dragon' and I'm working on the computer. 
Drs came by on rounds.  Not much to change.  They took her off the oxygen to see how she does, other than that no changes in meds.  The low appetite and tummy aches seems to be the main thing the drs are watching.  Her monitor goes off every once in a while, but I try not to look at it. 
Catherine Stucki came by last night and spent a few hours.  She is very kind and concerned about the situation.  On Monday Gage and Sierra have heart appointments.  For Sierra it is a regular 2 month echo checkup.  For Gage, they want to look / listen to him and increase his heart med. I am still planning on flying home with the kids on Tuesday, but it all depends on how Lindsey does.  I don't know what they will do if her appetite keeps going down.
Lindsey loves Erika's flip flops and robe.
That's it for now

June 22, Friday, Day 3, Dopi must have helped.

12:45. So the Dopamine must have helped yesterday.  She slept till noon and felt better yesterday.  Still eats lousy, couple bits for meals at best.  This morning she ordered a hard boiled egg (the way Grandpa Bingham makes them), yogurt, and juice.  She had 1/2 an egg, 1 bit of yogurt and a little juice. That is about average for a 'good' day.  Her energy level comes and goes. She will be happy, perky, playing the wii, 'jabber jaws',  up and around.  Then it's as though someone pulls the plug.  Quite, no energy, no appetite, just stares off into space.  So I am trying to not let her 'highs' get me to high, because I know the 'lows' are just around the corner. Few steps forward, few steps back, keep the faith.
Slept much better last night.  Slept till about 8 am.  We were expecting a phone call from her but it never came.
Just went on a good walk.  This time we went 3 times around the unit.  That's a new record.

Talked the doctors on rounds.  No major changes to meds. Still adjusted Heparin levels for her blood clot, we should be off that soon and using coumadin.  They still want to get her to the 3rd floor, still need a few more 'good' days before they will let her go.  Honestly, I am good with that. Keep her here as long as she needs.  They did an echo on her little while ago.  You can see the blood clot really clearly in the picture.  It is about 1.5 cm round sitting in the bottom of the right side of her heart.  They say it should just stay there till transplant, no real danger right now.
Sierra, Gage, Renee and Randy are on there way from Utah.  Lindsey is excited to see her sister and little brother.  Gage will be pretty wild here in the ICU.
The adult cardiologist called regarding the echo's Stacy and I had done a few days ago.  Our hearts look and act complete normal.  No issues to note.  This still blows my mind that 3+ kids have the same heart disease and the other 2 have issues to watch, and Stacy and I are completely normal.  The genetic testing should be back in about a month.  They are also testing for 'hard metals' in Lindsey's urine.  Still looking for clues.  Once we get the water tests back on our house water, they would like to get the report on that too.
The SF Chronical came by to do an article on Mary Burge, our social worker.  She is a wonderful lady who helped us with Sierra and now Lindsey.  They wanted to interview us and hear our story and our experiences with Mary.  The article should be out the 2nd week of July.
Still mentally preparing myself for the Berlin Heart. Hard to image her going 3-6 months on these meds without mechanical support, but maybe. Regardless, I firmly believe she will make it to transplant.
Thats it for now,
Jason

 Lindsey and the parade on the 3rd lap around the 2nd floor unit.

Picture of the echo/ ultasound of her heart.  You can see the blood clot in the bottom left side.

Lindsey and I playing the wii.

June 21, Day 2, Long night...Bad day

10:30am
Long night.  She didn't tolerate the medicine adjustment very well.  We had to drag her on her evening walk.  Did not want to go.  We are talking about a lap around the unit, not very far, she was just not feeling well.   At 10 pm last night she started getting tummy pain, but went away. 
At 4:30 am Stacy and I got a phone call from the nurse.  She was throwing up and wanted her Mom or Dad.  I threw on some clothes (of course, da) and ran over.  Since then she has vomited about every 20 minutes or less, and was still going at it when I left at 9:30. 

They were hoping she wouldn't have this reaction after dropping the dopamine, but obviously not.  They have now turned the dopamine back on and hopefully today she turns around.  For now even if she has 'good' days the Doctors want her in the ICU for at least 5 more days.
Now when I say she has a 'good' day that means she may eat a small bowl of cold cereal, and a small bowl of spagetteos to eat all day.  She would go on 2 walks around the unit, and no tummy pain. Other than that she just stays in her room and either lays in her bed or sits in the chair.
Stacy is doing a great job trying to keep Lindsey busy.  They are writing thank you cards, reading books, playing games, painting her nails, and reading through all the wonderful cards Lindsey's fans are sending.

Yesterday Lindsey was 'officially' listed on the transplant list.  There had been some paperwork issues and reports that were holding it up.  The catheterization on Tuesday and related report was the main thing holding up the listing.  I guess the ICU Dr. called the insurance company 3 times and I even called a couple of times. She was listed yesterday afternoon.  I guess the squeaky wheel really does get the oil.

I have started to spend a little more time back here at the RMH (Ronald McDonald House) to try to get a little work done. Have to see how today goes. I told Lindsey if she can start feeling better, I will come back and play the wii with her. Child Life brought in a TV and wii system in, just have to see how she does.

In the back of my mind I know she will make it thru this.   I am just assuming if Sierra could make it thru this, then she should too. Hope my Mom can relax and enjoy her trip with her sister.  She is going to Europe with her sister, Jerry for 10 days. Should be a great experience for them.   But I also know the horrible pit you get in your stomach when there is bad news, especially when you are so far away.  I just know Lindsey is exactly where she needs to be, the Drs are watching her close, and Stacy is cool around her.

It was good to have Gage and Sierra here this weekend.  They both have Dr appointments next week.  Regular check up for Sierra, medicine adjustment for Gage. Lindsey said she doesn't want to play with them yet, but maybe after she feels better.  Good to hear Lindsey talk to Sierra and compare stories.  I think Sierra is a real strength to her and her parents.

Met a family from Adrian, Oregon, Cade and Stephanie Thomas.  They were surprised we were from Powder Valley.  They have an unborn child who has heart problems.  When the baby is born, it will go to heart surgery.  They have a 2.5 year old boy who Gage will be able to play with.  So be grateful for your healthy kids, you see some crazy stuff here.

What is hard is how this is going to start dragging on.  Lindsey has been here exactly 1 month today, and on the transplant list for 1 day.  They are saying that it could take 3-6 months for a donor heart (that is 90-180 days) uggggh.  They are not talking Burlin Heart yet, but if she doesn't turn around today, it won't take long. May try to go home for a bit next week, not sure yet, just have to see.
I will update as needed.
Sorry to ramble on. I am treating this as my diary of Lindsey's story.

June 20, Day 1 ON THE LIST!!

Just talked to Dr's.  The plan is to wean her off the dopimine and see how she does.  They think that drug 'may' be causing the arrhythmias.  If she doesn't have belly pain and does well, then she might be able to go up to 3 West.  That means OUT of the CVICU.  Just have to see.
Also wean her off the Heperin to coumadin, a more long term blood thinner.  She still has the blood clot in her right side.
Drs told Lindsey it is important to go on walks.  Good for her heart, good for her muscles, and especially good for her attitude!  Lindsey can get a bit snotty just sitting around.
So, hope for a good day, and maybe we can get to the 3rd floor.

Stacy and I are getting anxious to see our kids.  Gage and Sierra are coming Friday with Renee and Randy.  We are excited to see our kids.  Hopefully Hunter and Megan are doing well. Going to try and get some work done and call our insurance company today. 
We sooooo appreciate the love, support, prayers, and comments from our family, friends, and community.

Sierra and Lindsey were talking on the phone this morning.  Sierra asked how the 'Cath' went. Lindsey said, 'I don't know, I was watching a movie'.  It's kinda cute to her those 2 talk about their experiences. That has to be good for Lindsey.    Just found out Lindsey is now listed. Let the wait begin. Bring it on!

June 20, Waiting to be listed

These pictures tell a lot about her status. 
Lindsey had an uneventful evening and night.  No arrhythmias or other alarming stuff. Last night we took her on her only walk of the day.  Had to drag her out of bed.  She doesn't like to get out much. Ate a little bit last night, 2-3 bits. They have been giving her quite a bit of diuretics (IV to make her pee).  They have pulled a lot of fluid off of her.  When the heart is pumping well, fluid gets built up in her body, lungs, etc. By pulling the fluid off, the heart doesn't have to work as much. 
The top picture shows how she feels most of the time.  Stacy does a good job helping her feel cute.  She washed and did her hair this morning.  Looking pretty cute this morning.  Right now she is working on her 'homework'.   I try not to look at the monitor much, it shows her heart rate, oxygen level, blood pressure, and a bunch of other things I have no idea what it means.  If you look at it too much, it can consume you and drive you crazy.  So we are hoping for a nice boring day. Rounds will be coming by soon.  Then we will find out what the doctors want to do or adjust for.
She still is NOT on the official transplant list.  Now we are waiting on our insurance company.  If it hasn't happened this morning, I would like to call and find out from a parents stand point.  It's not like we are trying to screw the insurance company.  I just want to know what the hold up is. Everyday counts to me.
Stacy and I had our echos today in the adult echo labs.  We will find out this afternoon if there is anything, but the tech didn't see anything major.
Here comes rounds... talk later
   

June 19, Sierra's advice

Sierra gave her some good advice for the procedure.
1- Be Brave.
2- Hold the nurses hand, and
3-Ask what are they going to do next.
Lindsey said she did that. She stayed awake during the procedures, held Rosalie's hand, asked questions, and played the Kindle (thanks Ronda and Kerri). That is good advice for all of us.

June 19, Just came out

She came out of the procedure well.  They were able to test all the pressures in her heart and lungs as needed for the transplant.  She did not have any of the complications they were preparing for, ie blood clots, arrhythmias, etc.  They did not need to put her on the echmo.
That is how the test went.  As for her right now, that is different.  She is grumpy, and crying. A few tummy aches, and on oxygen. Still hasn't eaten today, but hope she will soon.  Drs are watching her very close for complications.  Dr Yeh, Heart failure specialist, came in and explained her status.   After talking to him and how much she has dropped, I wouldn't be surprised to see her on mechanical support (Berlin Heart or Thoritec or Echmo) within a week or 2. Hopefully not though.  They act much more confident about the Berlin Heart than they did 6 years ago.
Met with the genetic councilor, Kyla Dunn.  They have sent off Lindsey's blood to be tested against about 35 different known genes that cause this heart disease. It will still take till mid-August before results are back.  They are also going to test our kids against environmental issues that could cause this disease. If our kids have Cobalt, Lead, Mercury, Arsenic, Copper, Selenium, Chromium, Antimony, Beryllium, or other 'stuff' this could cause the disease.  We are getting water tested as we speak. 
Stacy is doing great.  She is strong and focused.  I have had tough time this morning.  Hard to see my little princess feeling so bad.  I guess I'm trying to prepare for  the ugly stuff to come.
Talked Catherine Stucci, the LDS Chaplin.  She will be coming by today for a visit.  We sure like her.  Mary Burge, our social worker is going to work for us for housing. Bob Paugh brought dinner to us last night, very nice.
Sierra is with Garrity and Seth and has a orthodontis appointment tomorrow in  Ontario.  Other kids are in Utah.  Renee and Randy will bring Gage and Sierra this weekend.  They will have heart appointments next week.  They will be increasing Gage's meds for his heart enlargement.
Hunter and Megan will be staying in Utah for a while until we can figure this out.

June 19, Just went in

Lindsey just went in for the Catheritation. They once again explained the risks involved. So now we wait. They are prepared to put her on echmo and explained how that will work.