Oct 26, Friday, Marcie, PK, & Sadie

It is amazing how good of a day she has when she gets a good nights sleep.  She woke up in a good mode and did well in school and PT. You can sense an effort by the nurses, therapists, and staff to help give Lindsey the best quality of life at the same time following the policies and procedures of the hospital.

Marcie, PK, and Sadie from the ward came by to visit and play with Lindsey and the kids.  They played games and had a lot of fun.  Stacy and I snuck out on a quick date out to get the Friday McDonald's food from the RMH. That was very nice of them to come by on a Friday night.

Tomorrow is a very exciting day.  We are putting on our annual Halloween party.  I can tell you now, Stacy is going to work her guts out to make this an awesome event. I am not sure what my job is yet, but whatever it is, I better do it! We have invited over 35 people and will be making homemade donuts in the Sobrato Room.  Lindsey has had to make the very tough decision of who she wants as her nurse. 3 of her absolute favorite nurses will be on.  I sure hope they don't get their feeling hurt if she doesn't pick them.  It was Lindsey's decision, we stayed way out of it.  We like them all too much to get involved in that one.

Dr Ashwin came by with a little 10 year old girl who also received a heart transplant.  The girls got to know each other and were able to paint Ashwin's fingernails.  We have also met Amanda, a teenager who received a heart and liver transplant back to June.  She has come by quite a bit for visits. She is nice to have around.

Had a dressing change at around 5:00 pm today. They sure like the pictures that Stacy and I take so they can compare each time.  This time you will notice more blood around the cannula site.  When they took the old dressing off, it pulled some of the scabs with it.  She has had to get lovenox shots every 12 hours for the last few days, so her blood is extra thin. So basically, she bleed like crazy.  The nurses got excited and called in a doctor to look at it.  I got a little light headed, and Lindsey could see the concern on the nurse's faces.  Once they could see what was causing the bleeding and we compared the pictures to older dressing changes everyone calmed down.  Next dressing change will be Monday, unless they see bleeding or other 'stuff' around the dressing.

Stacy and I have enjoyed and laughed at some of the comments made.  The nightmare story was pretty good.

 Lindsey and Amanda.

 Lindsey with her fancy new hair do.

 Yes, I slaved away at it.

 Dr. Ashwin getting his fingernails painted by the pre- and post transplant kids

 Friday's dressing change after the blood was cleaned up.
It seems the redness around the cannula has gone down, you agree?

Oct 25, Thursday, Another day in paradise

Lindsey finished the day very strong. School, PT, ate well, a short walk (and the Giants won).  This morning she was very worked up emotionally, not sure why, she was just really tired of this place (or just really tired). Denise, one of her fun nurses, and Lindsey both screamed into pillows in her room, just to let off some emotion. Lindsey really didn't calm down until Stacy and I got back to her room.  Of course a massage and a small nap helped too. This afternoon, she has been great.

Stacy, Gage and I went to a Halloween costume store in Redwood City in preparation for this Saturday's party and Halloween.  I have never been (nor will ever return) to a real costume store like that.  That place had everything, and I mean everything! There were all kinds of outfits I wanted Stacy to try on, but she found the one that was just right for the parties.

Lindsey's activity level has caused quite a stir for the doctors, nurses, and hospital staff. Remember, they have NEVER had anyone in this hospital with as much energy and strength as Lindsey has, and they don't have the policies and protocols in place to cover for it.  They are reinforcing and limiting her to 30 minute walks. It's not a battery or health reason. The Berlin Heart company does not guarantee the machine after 30 minutes on the battery.  So that's the policy. 30 minutes then plug in for 4 hours. We are going to get more creative to keep her spirits up.

They also want us to somehow limit the activities she does.  As I have said, she is more active than what the Berlin was made for.  They want us to be mindful of anything that would 'jar' the cannula's that go into her.  They think that is what the infection or inflammation is from, jarring the site, opening up a scab, and allowing irritation to develop.

Physical Therapy (PT) is probably going to work more with her.  If we are limiting her activity, then they are going to increase the activities they do with her.  They are fun therapists and will do a great  job.

They are still working on a policy to let her walk to the Stanford side.  Stacy and I have written a list of places Lindsey would like to walk to, such as the Stanford Cafeteria, the Atrium, Stanford gift store.  If we can do that, it would be a big boost for her.  They also are working on a 'Berlin Code', just like a Code Blue, or other emergencies.  Procedures both the LPCH and Stanford would use if there was a Berlin patient emergency.  It is interesting that Lindsey has prompted attention to new procedures in this hospital. 

So basically, it just another day in paradise.  Aren't these wonderful problems to have.  A hospital trying to keep up with a healthy 8 year old on a Berlin.  Honestly I will take these problems any day over some of the other tough situations we see up and down these halls.

 Ryan and Michelle Merrill (Stacy's brother and his wife) are coming this weekend.  We are all very excited about that.  Back in May, (a different life time ago) Ryan and I put in to go elk hunting in the Eagle Cap wilderness.   This is the week we would have gone.  So he and his wife decided to come visit instead.  Very nice of them.

 In PT, doing wall squats

 Our nightly walk to the CVICU, visiting Shawnbach, Joelle, and Hunters 'friends'.

This is the same room Lindsey was in down there.

Megan serving it up

Dressing change from Wednesday. Next one is Friday. 

Oct 24, A "Little" Break From the Feeding Tube

Last night, Lindsey's feeding tube leaked out all over her bed, twice.  The end of the feeding tube has two valves on it.  They are right next to each other and you close them by putting a plug, attached to the side of the valve, in the opening.  We have been fighting this feeding tube since it was put in.  It is always popping open.  The down side to this is that whatever is in her stomach, leaks out the tube.  Whether that be feeds, medicine that was just taken, or any drinks recently drank.  It really makes a mess.  The nurses have tried taping it with all kinds of tape, but it doesn't seem to work.  The only solution to the problem is to replace it.  As this is NOT one of Lindsey's favorite procedures, we have been putting it off for weeks.  After leaking last night it was the final straw and the docs decided it had to be replaced.  Lindsey took out her old one this morning and was free from a feeding tube until 7:00 this evening.  She was determined to prove that she didn't need it, but of course it is obvious that she does need it.  Her appetite just isn't there.  They gave her some ativan to help calm her during the procedure.  It kicked in right as they were starting and she sat and took it like a champ.  She didn't cry or nothing. I was really proud of her!

Lindsey's infection is looking a little better today.  The doctors have asked that we pull back her activity level a little.  She has been climbing up and down some big steps, skipping, jumping and most likely is the cause of the infection.  It very well could be causing quite an irritation to that right side tubing. We consented and agreed.  It was looking better over the weekend and then we took her on a long crazy and active walk and that was the day it looked more red. Child life brought an electric piano into Lindsey's room for her to borrow.  She was really excited, this is a little less active activity that will do her well.  It was very nice of them to let us borrow it. Other than the feeding tube and the activity level there is really nothing more to report for Lindsey.  She had a great day.

Megan won their last game today and will go on to the championship starting Monday.  She is pretty excited.  Hunter went back to school today, had a good day. Lindsey is loving having her daddy back and so am I!  It is good to be back together as a family.  It really seems to make all this "doable" when we are all together.

Oct 23, 'The Tales of Lindsey Lou'

Over the weekend we received a small book called, "The Tales of Lindsey Lou". It is a cute little bed time story about a little girl on an ocean quest. The words and pictures are incredible. We struggle for the proper words to describe how moved we are. We have both been moved to tears several times.  That thoughtful little book has become such a strength for our family.  Jason left a copy of the book at Jason's office in Baker. If you want a copy you will need to contact Danny or Sarah Kerns.

I apologize for the late update.  When Jason goes home he takes his computer, which leaves me with our alternative electronic devices. For some reason the alternative devices were not working, but now they are.  Lindsey slept GREAT last night.  Her wonderful nurse gave her a massage, and she was sound asleep by 10 pm and didn't wake up until 7 this morning. She was happier and feistier when I got there this morning.  I am not sure how her infection looks today, because the awesome nurse, Tracy talked the doctors into doing dressing changes 3 times a week instead of every day. This is great because her skin was breaking down around the VAD tubing and all over her stomach from the abrasive cleaner they use.  She was excited about that.

She had a great day at school and is into acting bossy and teasing her siblings like the old Lindsey. It is good to see, but you still have to remind her that her tubing is only so long.  I have heard the doctors and nurses say more than once that they have NEVER had a patient this active on the Berlin. We are truly blessed!

Megan won her volleyball game yesterday. The team did awesome! They beat them in two games, it was a fun game to watch. Her team has improved so much it is amazing to watch.  They really play as a team. Winning this game put them in second place, we are uncertain if there is a play off game, but tomorrow is her last scheduled game for the season.

Gage had his echo, EKG, clinic and pacemaker appointment today.  All good news! His echo looks the same if not a little better. They don't want to give us any false optimism, but he is in a great spot right now clinically. They don't need to see him for another 2 months. They checked his pacemaker and he is still riding it. I asked if it is normal to see that, and Deb said it is not common at all. He got the pacemaker at just the right time. His left ventricle pacemaker has been having to fire harder to keep the pace they want, so they will see him in 2 months instead of 4 with his other appointment. Again we are so blessed that we are where we are and that we have the technology available today that has saved 3 of our 5 children's lives so far.

Jason and Hunter are back and it is so good to have them home. Hunter is already asking when he can go back to school at North Powder. Thank you Allie for letting him come to your class on Monday, he has talked of nothing but that. He LOVED it!  He brought back a wonderful stack of letters and cards for Lindsey.  They were sure neat.  Lindsey sure lit up when she saw her Dad. She was almost ushering us out the door tonight, so she could have her daddy time.

Tomorrow Jason says he is going to put on his 'tough guy' hat and find out where they are at with letting her go to the Stanford side on extended walks.  She has been very good about staying on the LPCH side, but this is starting to drag on.  We will have to see how 'tough' he can be.

The Smiths were here on Friday last week.  It was so nice to see them and have them here. We sure love this family.  Jason sure wishes he could have been here to see and laugh with them.

 Good comparison of how her infection is doing.

1st picture is from last Thursday 10/18.

 Friday, October 19. Redness down drainage up.

 Saturday, October 20

Sunday, October 21

 Monday October 22.

Next dressing change will be tomorrow, Wednesday.

This is a fun video of the night life in Lindsey's room. Plenty of excitement as 'we' (Stacy) rounds the kids up for the trek to the RMH.

Oct 22, Monday - Another Rough Night

11:20 am. Stacy here
I thought we wore Lindsey out yesterday, but apparently not enough. We left her at 7:15, the nurse she had all day was staying over. She took Lindsey for a good walk. Jason called her at 9:30 to check in with her and all was well. At 11:15 she called me unable to sleep. I read her a fun book that we are reading and she calmed down. I thought she had fallen asleep because she wouldn't answer me. However, 2 minutes after I hung up, she called me in hysteria. I talked to her for awhile and got her calmed down. I asked the nurse if she could go and sit with her for 10-15 minutes until she fell asleep. The nurse sat with her and I thought that would be the end. Lindsey called me back at 12:15 am crying again. We talked for awhile and I got her calmed down and then we decided to say a prayer together. Lindsey said good-bye and she finally fell asleep after that. At least I didn't hear from her the rest of the night and neither did Jason.

 This morning she was a little quiet, ornery, and tired. As the morning goes on I hope she pulls out of it. She has one of her favorite nurses today, Shannon (yeahhhh). As far as her infection goes, it was looking better over the weekend. Today it looks more red like it did the first time we noticed it. It is oozing some drainage, which is good. That means the infection is draining out of the inflamed part. However, with her dressing changes going from once a week to every day, her skin is getting badly irritated and extremely sensitive. An area of the skin around her right cannula has broke open. When they clean it, it is very painful. This also doesn't help start her morning off well. They are going to start her on another antibiotic and see if that helps. The infection has not given her any fevers and is not keeping her tied to her room, which is wonderful. These are just small items, all-in-all, she is doing great.

 Crazy afternoon today, Megan has a big game today, they are playing Bowditch Middle School. They are ranked the number one team. So, Megan is nervous and excited for this game. Of course, there is Sierra who always has a TON of homework on Monday's and Gage who is along for the ride. So, I am glad Lindsey has Shannon today to keep her company today in my absence. Hunter was able to go to North Powder today to his 1st grade class that he will be in when we get to go home. He was really excited about that! He will be in the same class as some of his favorite cousins Abigail and Ayla.

Oct 21, A Long Night, Jason & Hunter in Oregon

8:50 am. Stacy here.
We had a great day yesterday. The kids and I wore our Cal shirts in honor of Meghan Cleary.  We thought we might get stoned, but we only got a few comments here and there. Thank you Meghan for the shirts, that was very nice.

 We went for a walk in the morning, along with our daily visit to the LPCH gift shop. Played some cards with Rachelle Williamson. She was here in May to June with their son and are back for another surgery. Very nice to visit with her. We taught her Nertz. We also went to the playroom and made some Halloween mobiles for our party on Saturday. We ended the day with some fun Halloween movies. The kids favorite was Hocus Pocus.

 Lindsey got tired and moody in the afternoon. She ended up taking an hour nap at 5:30. Unfortunately this made her not very tired when I had to leave to take the kids back to RMH. Even though we stayed as late as I dared, which was 9:30. Our kids tend to start falling apart if they get to bed too late, which makes the hospital room get really tiny really fast. I started laundry and got kids in bed as soon as we got home. She ended up calling me at 11:50 crying because she couldn't sleep and wanted someone to stay with her. I talked with her for awhile and she calmed down. Then she called her Dad and talked with him for about 1/2 hour.  When I got here this morning her feeds were still going. I asked why it were still going and the nurse said that she sat out with the nurses until about 1am, so she was behind on her feeds. Ugghhhh!! A little frustrating. She is awake and happy now, but I will have to wear her out today. She sleeps best when she is totally exhausted. There is nothing I can do about being here with her at night. So, wearing her out is our best option. Lots of walks today!!!

Jason and Hunter fly back on Tuesday.  Lindsey is counting down the days.

Today is a memorable day for us.  On this day 6 years ago we drove home from Calif with Sierra. Our total stay in Calif with Sierra was from 7/9/06 to 10/21/06. A total of 105 days, 4 days pre-list, 21 days on the list (and not a day longer), and 80 days post-transplant. We were and still are so blessed. 

 Uncle Seth and Garrity. Hunter Dad and I met up with them in Ontario.  They sure miss you Lindsey.

 Hunter and I on a 'Boys Night Out' in Baker.  Can you name this spot?