My night nurse said she sees Santa Clause going through the Hospital, but he goes fast.
Love Lindsey
Dressing change today, No we are not crazy about it.
Cleaning out the book shelf
Thursday, November 29, 2012
Nov 29, Lindsey here
This is LINDSEY talking. (Daddy typing) I get to go to the Stanford side tomorrow. I am SOOOOO excited. What are you doing tonight? Still waiting for my heart. I miss my family, everybody, and my friends. In PT I played the wii, and then we rode the bike. The games were Wii Games and Just Dance2. At school we did science. We took raw spaghetti and put marshmallows on them. There was as little kid in my class who was blind, and I feel bad for him. When we were making art, he didn't know what to do, but 2 ladies helped him. The dressing change hurt, it don't feel good, and I don't like it. I wish they did in only once a week, not 2 times a week. It itches a lot.
My night nurse said she sees Santa Clause going through the Hospital, but he goes fast.
Love Lindsey
My night nurse said she sees Santa Clause going through the Hospital, but he goes fast.
Love Lindsey
Wednesday, November 28, 2012
Nov 28, New office space
Thank goodness a heart didn't come today. Lindsey would have had to walk herself to the operating room. Busy day for everyone.
Stacy took Gage to his doctor's appointment. It was a 'regular' doctor's appointment, not a heart doctor. Nothing major to report, they want to do a blood draw to test one of his levels. He still has an occasional nagging cough but is feeling and acting a lot better. Really the only time he coughed was in Lindsey's room. Then we get these nasty dirty looks from the nurses, and I don't blame them. I guess Stacy and Gage waited 3 hours before they saw him. I don't understand how an office can do that to their patients. If I have a client waiting for me and it's going to be THREE HOURS I might let them know. Just a thought. Stacy was ticked and still is!
I went to my new office space today. Shawn Hansen has arranged for me to have office space at his attorney's office on the other side of Stanford. Very nice of him and the firm to allow me somewhere I can set up shop, spread my work out, and really focus on my accounting work. I continue to be humbled by the acts of kindness we have received. Thanks Shawn.
I worked until about 4:30 then headed back to the hospital and met up with all the kids. Sierra had/has a mountain of homework. Stacy has spent the entire afternoon with her helping with various assignments. So, because of all this Lindsey spent most of the day by herself. She was surprisingly in a good mood thanks to good nurses that keep her going while we are away.
Rained hard today. I love the rain. When I see rain, I see green grass, which grows, which feed cattle, which helps with cattle prices, so it's all good.
Today Juan from the RMH wanted to visit with one of us, so Stacy headed down. At first she thought we had done something wrong but he wanted to ask for our assistance. He told her that this Friday is a huge fund raiser event in San Jose for the RMH Charities. He was wanting a family to share their story and how the RMH has helped. So guess what. If we understand correctly, this Friday at 2:00 I am going to the HP Pavilion in San Jose to give a 5-8 minute talk about our family. Now the HP Pavilion is where the Sharks play hockey and where we went to watch Van Halen and AC/DC (those concerts were so awesome... rock on!) Anyway, it's big! I'm guessing there must be a smaller convention center not thee Pavilion but we will find out more tomorrow. Whatever and whereever it is, there will be a lot of big shots with big bucks there, so Bingham, don't screw it up. Tomorrow I will be working on my little presentation in the quiet of my fancy new office.
At the same time, Friday at 2:00, Stacy will be here with Lindsey as they venture to the Stanford Atrium for the first time in months to watch the Enchanted Toyshop Ballet. We talked whether I should be here, but we feel this is an opportunity to help the Ronald McDonald House. They help us in so many ways, this is our chance to help give back. Lindsey was a bit disappointed, but there will be plenty of times to walk down there.
By the way, Doctor's rounds with Lindsey these days are pretty short. She is doing fantastic and just waiting for that perfect 'O' negative heart. She has gained over 15 lbs since those horrible pictures in early July. Still no appetite, but I can hear the feeding tube pump working away behind me.
Stacy took Gage to his doctor's appointment. It was a 'regular' doctor's appointment, not a heart doctor. Nothing major to report, they want to do a blood draw to test one of his levels. He still has an occasional nagging cough but is feeling and acting a lot better. Really the only time he coughed was in Lindsey's room. Then we get these nasty dirty looks from the nurses, and I don't blame them. I guess Stacy and Gage waited 3 hours before they saw him. I don't understand how an office can do that to their patients. If I have a client waiting for me and it's going to be THREE HOURS I might let them know. Just a thought. Stacy was ticked and still is!
I went to my new office space today. Shawn Hansen has arranged for me to have office space at his attorney's office on the other side of Stanford. Very nice of him and the firm to allow me somewhere I can set up shop, spread my work out, and really focus on my accounting work. I continue to be humbled by the acts of kindness we have received. Thanks Shawn.
I worked until about 4:30 then headed back to the hospital and met up with all the kids. Sierra had/has a mountain of homework. Stacy has spent the entire afternoon with her helping with various assignments. So, because of all this Lindsey spent most of the day by herself. She was surprisingly in a good mood thanks to good nurses that keep her going while we are away.
Rained hard today. I love the rain. When I see rain, I see green grass, which grows, which feed cattle, which helps with cattle prices, so it's all good.
Today Juan from the RMH wanted to visit with one of us, so Stacy headed down. At first she thought we had done something wrong but he wanted to ask for our assistance. He told her that this Friday is a huge fund raiser event in San Jose for the RMH Charities. He was wanting a family to share their story and how the RMH has helped. So guess what. If we understand correctly, this Friday at 2:00 I am going to the HP Pavilion in San Jose to give a 5-8 minute talk about our family. Now the HP Pavilion is where the Sharks play hockey and where we went to watch Van Halen and AC/DC (those concerts were so awesome... rock on!) Anyway, it's big! I'm guessing there must be a smaller convention center not thee Pavilion but we will find out more tomorrow. Whatever and whereever it is, there will be a lot of big shots with big bucks there, so Bingham, don't screw it up. Tomorrow I will be working on my little presentation in the quiet of my fancy new office.
At the same time, Friday at 2:00, Stacy will be here with Lindsey as they venture to the Stanford Atrium for the first time in months to watch the Enchanted Toyshop Ballet. We talked whether I should be here, but we feel this is an opportunity to help the Ronald McDonald House. They help us in so many ways, this is our chance to help give back. Lindsey was a bit disappointed, but there will be plenty of times to walk down there.
By the way, Doctor's rounds with Lindsey these days are pretty short. She is doing fantastic and just waiting for that perfect 'O' negative heart. She has gained over 15 lbs since those horrible pictures in early July. Still no appetite, but I can hear the feeding tube pump working away behind me.
Tuesday, November 27, 2012
Nov 27, Stacy is back / The Walk policy
Amazing, but Lindsey had a great day. After not getting to sleep until 11:45 last night, I thought she would be a bear today. She had a great day at school, ate outside downstairs by the fountain, and had fun at PT. Gage is feeling a lot better. We have kept him under lock down in his room but this afternoon, he is doing better. Stacy came over around 5:30 and Lindsey gave her a huge hug.
I took the kids to Sierra and Megan's basketball practice. That is good for all of us. Really good for Stacy and Lindsey to have a little Mother Daughter time. They were both needing it.
Friday is the day we will finally be able to walk to the Stanford side. What they want to establish is how far can a Berlin kid walk in 15 minutes from her room. However far Lindsey can go in the hospital in 15 minutes will be the perimeter for the hospital policy. It actually makes sense, 15 there and 15 back for a total of 30 minutes on batteries. For liability reasons she can't go over the 30 minutes even though everyone knows the batteries can last for over an hour. Since Lindsey is so active and healthy she will help establish the policy standard for the maximum distance for all Berlin kids at LPCH (that's kinda cool isn't it). So Linds and I decided we are going to have our running shoes on, Hunter and Gage holding the elevators, the girls clearing traffic, and Mommy picking up anything that falls off the Berlin. We figured if she hurried, she could walk to the RMH in the 15 minutes. Not sure they would buy off on that. Joking aside we will walk at a 'normal' pace in the hospital and see where we end up.
On Friday, there is a musical dance theatre performing in the Stanford Atrium. We have been using this to help move along the policy. Remember the patience... that's right!
With Gage feeling better, Stacy will be here more, and I am going to start working out of an office starting tomorrow. In preparing for the upcoming busy tax season, I hope this works out.
Thanks for the 'Sunbeam' story. We all thought it was cute.
I took the kids to Sierra and Megan's basketball practice. That is good for all of us. Really good for Stacy and Lindsey to have a little Mother Daughter time. They were both needing it.
Friday is the day we will finally be able to walk to the Stanford side. What they want to establish is how far can a Berlin kid walk in 15 minutes from her room. However far Lindsey can go in the hospital in 15 minutes will be the perimeter for the hospital policy. It actually makes sense, 15 there and 15 back for a total of 30 minutes on batteries. For liability reasons she can't go over the 30 minutes even though everyone knows the batteries can last for over an hour. Since Lindsey is so active and healthy she will help establish the policy standard for the maximum distance for all Berlin kids at LPCH (that's kinda cool isn't it). So Linds and I decided we are going to have our running shoes on, Hunter and Gage holding the elevators, the girls clearing traffic, and Mommy picking up anything that falls off the Berlin. We figured if she hurried, she could walk to the RMH in the 15 minutes. Not sure they would buy off on that. Joking aside we will walk at a 'normal' pace in the hospital and see where we end up.
On Friday, there is a musical dance theatre performing in the Stanford Atrium. We have been using this to help move along the policy. Remember the patience... that's right!
With Gage feeling better, Stacy will be here more, and I am going to start working out of an office starting tomorrow. In preparing for the upcoming busy tax season, I hope this works out.
Thanks for the 'Sunbeam' story. We all thought it was cute.
Lindsey and Shannon, her nurse, playing around during lunch.
Lindsey doing her 'Old Lady' act at PT
A little yoga, Warrior One
Drama Queen
Practicing her Princess entrance on the stairs.
Monday, November 26, 2012
Nov 26, Here all day and going Nuts
Thank-you for the comments and jokes. Lindsey and one of the Dr's in the CVICU were having a 'joke off' in the hallway on her nightly walk. I was looking up jokes for Lindsey to shoot at the doctor. It was pretty fun.
Strange day today. Because of Gage not feeling good, and trying to keep Lindsey healthy, I have stayed with Lindsey ALL DAY. I showed up at 8:00 am and have never left. They did a dressing change, (which is looking a little better, next one on Thursday). I washed and did her hair in a dang cute pony tail. We gave her a sponge bath and took her to school on time. Worked out of her room and took her on 2 walks. Ate left overs we had in the Sabroto room refrigerator. Played a few games and put her to bed. She took a big ole nap and is now wide awake. O well.
Honestly, and I mean honestly, I don't know how Lindsey hasn't gone completely nuts from staying in this room and this hospital for 6 months. I have been here one solid day and it starts to get to you.
Stacy and the rest of the kids NEVER came over today. We are just trying to keep Gage's yuck from Linds. With the horrible cell phone service in the RMH I haven't talked to my wife much today. Stacy is feeling the same way about the RMH. She hasn't been out of that room since Friday night. Hopefully keeping our distance will pay off. Gage has a doctor's appointment Wednesday and Sierra has another dose of IVIG this Friday. The fun never stops.
The comments are all encouraging. We read each one.
This is Cathy Rigby. At age 61 she played Peter Pan and did an incredible job. She was doing flips and splits all over the place. Girls just loved it.
Strange day today. Because of Gage not feeling good, and trying to keep Lindsey healthy, I have stayed with Lindsey ALL DAY. I showed up at 8:00 am and have never left. They did a dressing change, (which is looking a little better, next one on Thursday). I washed and did her hair in a dang cute pony tail. We gave her a sponge bath and took her to school on time. Worked out of her room and took her on 2 walks. Ate left overs we had in the Sabroto room refrigerator. Played a few games and put her to bed. She took a big ole nap and is now wide awake. O well.
Honestly, and I mean honestly, I don't know how Lindsey hasn't gone completely nuts from staying in this room and this hospital for 6 months. I have been here one solid day and it starts to get to you.
Stacy and the rest of the kids NEVER came over today. We are just trying to keep Gage's yuck from Linds. With the horrible cell phone service in the RMH I haven't talked to my wife much today. Stacy is feeling the same way about the RMH. She hasn't been out of that room since Friday night. Hopefully keeping our distance will pay off. Gage has a doctor's appointment Wednesday and Sierra has another dose of IVIG this Friday. The fun never stops.
The comments are all encouraging. We read each one.
Meghan, Sierra, and Megan at Peter Pan
Dad, Alya, Linds, Keanna, Mom, Garrity, and Uncle Seth before leaving Saturday.
Sunday, November 25, 2012
Nov 25, Peter Pan & Reflections/Thoughts
Lindsey had a melt down this evening, and earlier today Stacy had to give me a bit of a pep talk. So if it seems like I am rambling or complaining, I am not, just getting it off my chest. More of the same ole' stuff on a different day.
Report on Lindsey. Same old walks, feeding tube, play room, games, take meds, but tonight it caught up with her. She was crying and wants to get out of here. She is tired of the monitors, Berlin pump, and pokes. What started it was Sierra and Megan went with Meghan Cleary from Berkley to a Peter Pan musical in San Jose. Meghan Cleary had a high school friend in the play and had a few tickets for Sierra and Megan. The girls had a great time, but Lindsey wanted to go too. We tried to keep it from her, but she found out. She feels good enough to go, and just wants out of here.
So tonight Linds and I laid on her bed looking at the ceiling as if we were home laying on the trampoline looking at the milky way and big dipper. We talked about everything we could think of that bugged her and everything she misses. She still really wants to go home. 3 West is nice and the nurses are doing the best they can, but she wants out. She also understands the situation, and is glad to be as healthy as she is.
Stacy is still at the RMH with Gage. She and Gage have not been over here since Friday night. We are just trying to keep as much distance between Gage and Lindsey as we can, just to be safe. So I had the kids today at church and here at the hospital while Stacy and Gage were partying at the house. We still watch Gage pretty close. He eats so little and looks pale most of the time. Sure hope the heart meds keep him out of acute heart failure. Time will tell.
Sierra continues to concern us. She has been complaining of her tummy feeling and looking bloated. And she is right, it does look a bit more pudgy. When we were at her last checkup a few days ago we told them and they noticed her liver was a bit enlarged. They didn't act overly concerned about it (around us), but it has been weighing on me. For my own sanity, I need Bernstein or someone to explain what they think is going on. In the past, these things have usually been med adjustments. I have also learned, if we tell them and they don't get too excited about it, then I'm not going to get excited about it. It doesn't do me any good to get all worked up over something I cannot control. Sometimes, when Stacy and I see things like this, I go into a bit of denial. I don't want to talk about it, I just want it to go away. I know that is wrong, but I do. When we add this issue to Sierra's other challenges with school work, friends, and physical activity, she can occupy a good portion of my prayers.
Megan and Hunter are doing great. Megan and Sierra are turning into young ladies. I'm not sure I am prepared for that, but Stacy said I better get ready because it is happening. Just another way the RMH is pretty cozy.
Today in church, they talked about where we often put our focus in life; money, wealth, job, activities, sports, etc. I cannot even comprehend a world where I would have the option, or luxury, of focusing on something other than my kids. There is a faint memory of a day when we would get up, exercise, and go to work without worrying about any of the kids. I know I am wrong, but I often get the feeling like this is never going to end. I'll admit, sometimes it is hard to pray. Feels like I am asking for the same old things. I still believe, and have a strong faith and hope, that God hears my sincere prayers. I also know patience is a virtue and that we are all getting stronger from this experience. Lindsey is tired of this, I am tired of this, but we also see a lot of other kids and families in the hospital we would NOT want to switch places with. From that, we thank our Heavenly Father for the blessing and miracles already poured out for our family, and that is sincere.
This week I am going to start working out of an office here in Palo Alto. Despite my concerns above, our kids are now good enough where I can get out and work from a real live office. I know it will be good for my sanity. I have been able to work out of the RMH, but the cell phone and internet service is horrible. There is a guy in the church that is allowing me some temporary office space as needed. There are so may good people out there willing to help. Thank-you and good night.
Report on Lindsey. Same old walks, feeding tube, play room, games, take meds, but tonight it caught up with her. She was crying and wants to get out of here. She is tired of the monitors, Berlin pump, and pokes. What started it was Sierra and Megan went with Meghan Cleary from Berkley to a Peter Pan musical in San Jose. Meghan Cleary had a high school friend in the play and had a few tickets for Sierra and Megan. The girls had a great time, but Lindsey wanted to go too. We tried to keep it from her, but she found out. She feels good enough to go, and just wants out of here.
So tonight Linds and I laid on her bed looking at the ceiling as if we were home laying on the trampoline looking at the milky way and big dipper. We talked about everything we could think of that bugged her and everything she misses. She still really wants to go home. 3 West is nice and the nurses are doing the best they can, but she wants out. She also understands the situation, and is glad to be as healthy as she is.
Stacy is still at the RMH with Gage. She and Gage have not been over here since Friday night. We are just trying to keep as much distance between Gage and Lindsey as we can, just to be safe. So I had the kids today at church and here at the hospital while Stacy and Gage were partying at the house. We still watch Gage pretty close. He eats so little and looks pale most of the time. Sure hope the heart meds keep him out of acute heart failure. Time will tell.
Sierra continues to concern us. She has been complaining of her tummy feeling and looking bloated. And she is right, it does look a bit more pudgy. When we were at her last checkup a few days ago we told them and they noticed her liver was a bit enlarged. They didn't act overly concerned about it (around us), but it has been weighing on me. For my own sanity, I need Bernstein or someone to explain what they think is going on. In the past, these things have usually been med adjustments. I have also learned, if we tell them and they don't get too excited about it, then I'm not going to get excited about it. It doesn't do me any good to get all worked up over something I cannot control. Sometimes, when Stacy and I see things like this, I go into a bit of denial. I don't want to talk about it, I just want it to go away. I know that is wrong, but I do. When we add this issue to Sierra's other challenges with school work, friends, and physical activity, she can occupy a good portion of my prayers.
Megan and Hunter are doing great. Megan and Sierra are turning into young ladies. I'm not sure I am prepared for that, but Stacy said I better get ready because it is happening. Just another way the RMH is pretty cozy.
Today in church, they talked about where we often put our focus in life; money, wealth, job, activities, sports, etc. I cannot even comprehend a world where I would have the option, or luxury, of focusing on something other than my kids. There is a faint memory of a day when we would get up, exercise, and go to work without worrying about any of the kids. I know I am wrong, but I often get the feeling like this is never going to end. I'll admit, sometimes it is hard to pray. Feels like I am asking for the same old things. I still believe, and have a strong faith and hope, that God hears my sincere prayers. I also know patience is a virtue and that we are all getting stronger from this experience. Lindsey is tired of this, I am tired of this, but we also see a lot of other kids and families in the hospital we would NOT want to switch places with. From that, we thank our Heavenly Father for the blessing and miracles already poured out for our family, and that is sincere.
This week I am going to start working out of an office here in Palo Alto. Despite my concerns above, our kids are now good enough where I can get out and work from a real live office. I know it will be good for my sanity. I have been able to work out of the RMH, but the cell phone and internet service is horrible. There is a guy in the church that is allowing me some temporary office space as needed. There are so may good people out there willing to help. Thank-you and good night.
Saturday, November 24, 2012
Nov 24, Saturday, Gingerbread Houses
We like the idea of the 12 days for different people/patients. Thanks. That will be good for our family to do that.
Mom and Dad and the crew left for Oregon around 11 o'clock. Nice to have them here, but Ayla was starting to get a bit homesick. Stacy stayed home with Gage today. He is still not feeling to spiffy (the British word of the day). Sierra and Megan had Lightning Basketball practice, that is so good to have them going to that, we all love to get out and run a bit.
Liz Niccum came by with her kids and brought gingerbread house kits. She is very nice and thoughtful. The girls had fun putting them together and decorating them here in Lindsey's room. The remaining frosting got a little out of control.
Shawn and Trista came by this evening. Always fun to visit with them about what is going on in their lives. They are in the area until December 4 for his next biopsy. Megan and Sierra made the effort to come back to the hospital to see them. Interesting watching my daughters grow up and interact with other kids. Haven't seen much of Amanda, I guess she has a virus and has stayed in her room for a few days now. We hate viruses. There are to many rooms here on 3 West with signs on the doors warning about viruses, colds, flu, etc. If Lindsey catches a virus (which she hasn't), she would be quarantined to her room and taken off the transplant list until it clears up. So we hate viruses. Just something to worry about.
That's about it. I'm going to finish watching Indiana Jones.
Mom and Dad and the crew left for Oregon around 11 o'clock. Nice to have them here, but Ayla was starting to get a bit homesick. Stacy stayed home with Gage today. He is still not feeling to spiffy (the British word of the day). Sierra and Megan had Lightning Basketball practice, that is so good to have them going to that, we all love to get out and run a bit.
Liz Niccum came by with her kids and brought gingerbread house kits. She is very nice and thoughtful. The girls had fun putting them together and decorating them here in Lindsey's room. The remaining frosting got a little out of control.
Shawn and Trista came by this evening. Always fun to visit with them about what is going on in their lives. They are in the area until December 4 for his next biopsy. Megan and Sierra made the effort to come back to the hospital to see them. Interesting watching my daughters grow up and interact with other kids. Haven't seen much of Amanda, I guess she has a virus and has stayed in her room for a few days now. We hate viruses. There are to many rooms here on 3 West with signs on the doors warning about viruses, colds, flu, etc. If Lindsey catches a virus (which she hasn't), she would be quarantined to her room and taken off the transplant list until it clears up. So we hate viruses. Just something to worry about.
That's about it. I'm going to finish watching Indiana Jones.
Yeah, they got a bit wound up with the frosting.
Friday, November 23, 2012
Nov 23, Black Friday
Dale and Leslie took the boys and Ayla to the park and out to play. Sierra, Megan, Keanna, Garrity, and Uncle Seth stayed here with Lindsey and played games and such. And Stacy and I went on date to do some shopping, eat at 'In-n-Out Burger', and watch the movie Breaking Dawn #2. I have learned that by watching movies my wife wants to see, it usually pays good dividends! It was all very nice.
We didn't do the crazy Black Friday shopping stuff. We were all a bit intimidated by the California crowds and didn't want to be swept away. Honestly, I have no idea what to shop for with our kids. They have everything they need, and if we did get something, where in the world would we put it. This is going to be a Christmas to remember, so I just want to approach it correctly not just more 'stuff'.
Shawn Stockwell, our Alaska friends, were discharged today. Nobody seems to want to stay in the hospital with us (and that's a good thing). However, it is making our efforts to do the 12 Days of Christmas for another patient a bit more challenging.
Saturday, Dad and Mom and the crew head back to Oregon. Sure nice having them here. They have all done a lot to lift Lindsey spirits.
Lindsey liked the Doctor related jokes. Thanks for the comments.
We didn't do the crazy Black Friday shopping stuff. We were all a bit intimidated by the California crowds and didn't want to be swept away. Honestly, I have no idea what to shop for with our kids. They have everything they need, and if we did get something, where in the world would we put it. This is going to be a Christmas to remember, so I just want to approach it correctly not just more 'stuff'.
Shawn Stockwell, our Alaska friends, were discharged today. Nobody seems to want to stay in the hospital with us (and that's a good thing). However, it is making our efforts to do the 12 Days of Christmas for another patient a bit more challenging.
Saturday, Dad and Mom and the crew head back to Oregon. Sure nice having them here. They have all done a lot to lift Lindsey spirits.
Lindsey liked the Doctor related jokes. Thanks for the comments.
Lindsey and a little triplet baby with heart issues. It was pretty cute.
Thursday, November 22, 2012
Nov 22, Thanksgiving Day
11:20 pm
Believe it or not, today felt like Thanksgiving. And we have so much to be thankful for. We had family here, Lindsey continues to do great, nurses and doctors take great care of her. Gage, Sierra, Megan, and Hunter are doing good. We have medicines and heavy machinery that help treat our kid's condition. I have a job that allows me to work away from home, I have a gorgeous wife that can manage the kids and stress load. Our kids are in school. We have a place to live, and wonderful people from the ward and community provide meals and support. We have the most incredible support from our home community in Oregon who we love and miss very much, and we have a strong faith and hope that God lives and hears and answers our prayers. We know the time is getting close for our Lindsey but not yet.
Lindsey started with a rough morning. They did not have to re-do the feeding tube last night, (thank goodness) so hopefully that is behind us. They did a blood draw and dressing change this morning. It took her till about 11:00 am before she was back to herself. She was just tired and cranky most of the morning. The rest of the day she was back to her fun self.
At 2:00 the food arrived like a parade. Liz organized the masterpiece for Thanksgiving dinner. It was a wonderful meal. We ate in the Sabroto Room and invited other families and patients to join us. Amanda was with us the whole time along with a few other families. Garrity and Seth organized a few games. It was just nice. It was very humbling to be the recipients of wonderful Christlike service, then to have patients with us that didn't have family here, and to have other small families eat with us that didn't have a traditional Thanksgiving meal. This was what the holiday was meant for. Just another way Lindsey's experience is blessing our lives.
Believe it or not, today felt like Thanksgiving. And we have so much to be thankful for. We had family here, Lindsey continues to do great, nurses and doctors take great care of her. Gage, Sierra, Megan, and Hunter are doing good. We have medicines and heavy machinery that help treat our kid's condition. I have a job that allows me to work away from home, I have a gorgeous wife that can manage the kids and stress load. Our kids are in school. We have a place to live, and wonderful people from the ward and community provide meals and support. We have the most incredible support from our home community in Oregon who we love and miss very much, and we have a strong faith and hope that God lives and hears and answers our prayers. We know the time is getting close for our Lindsey but not yet.
Lindsey started with a rough morning. They did not have to re-do the feeding tube last night, (thank goodness) so hopefully that is behind us. They did a blood draw and dressing change this morning. It took her till about 11:00 am before she was back to herself. She was just tired and cranky most of the morning. The rest of the day she was back to her fun self.
At 2:00 the food arrived like a parade. Liz organized the masterpiece for Thanksgiving dinner. It was a wonderful meal. We ate in the Sabroto Room and invited other families and patients to join us. Amanda was with us the whole time along with a few other families. Garrity and Seth organized a few games. It was just nice. It was very humbling to be the recipients of wonderful Christlike service, then to have patients with us that didn't have family here, and to have other small families eat with us that didn't have a traditional Thanksgiving meal. This was what the holiday was meant for. Just another way Lindsey's experience is blessing our lives.
The Feast
Playing 'Do you Love me'
Amanda joining us for dinner. Kylara would have been with us, but she was discharged yesterday.
Gage playing 'Do You Love Me'
Lindsey asking Megan, 'Do You Love Me'
Sierra asking a cute little girl who we didn't know, 'Do You Love Me'. (She didn't love Sierra, and that was very funny)
Lindsey and I dancing a bit in an effort to 'get her going'
Stacy washing her hair before the dressing change
Uncle Seth
Wednesday, November 21, 2012
Nov 21, The Feeding Tube drama
Started the day out with Lindsey throwing up her medicine. She felt good after she threw up, but the feeding tube came flying out. Linds was NOT happy about that. We told her she gets a day off from the tube, but tonight it had to go back in. She has been dreading that all day.
So now it is 11:35 pm, it took 3 attempts to get it in, and now they are doing a x-ray to see if it is placed in the right spot. It did NOT go well. Lots of screaming and gagging. They did give her some ativan to relax her, but all it has done is make her speech slurred, and a glaze in her eye. The nurses are thinking they will need to take it out because it didn't go in the right place, but the x-ray will tell. It's going to be ugly if we have to go for try #4.
Dale, Leslie, Garrity, Seth, Ayla, and Keana arrived around 4:30 pm. We are all very excited to see them. Tonight Garrity and Seth are staying at the RMH with the kiddos while Stacy AND I are staying here with our Princess. Not exactly a hotel suite for our first night together in months, but hey, I'll take it :) My Mom and Dad are staying at Barbara Alhouse's place, a condo close to the hospital.
I guess Kylara was discharged today, hope it goes well for her. Shawn and Trista will be here for a while. They will be joining us for Thanksgiving tomorrow.
Thank you for your great comments and great ideas about the walk policy. The Doctors really do want her to go for longer walks. They see the mental and emotional benefits of the extended walks. They just need to get the policy in place before she ventures to another hospital (Stanford side). As it stands, if there was a problem on the Stanford side, they would have to call 911, with the ambulance, fire department, and emergency rooms involved, even if it was something minor (like what, I don't know).
It is amazing what a strength Ruth Friebose is to our family. If she can be home, so can Linds.
Lindsey with no feeding tube and NO IV. They took the IV out and it does NOT need to be replaced. After this picture the drama started. It was not fun, but she was a trooper and stuck with it. We are still waiting to here back from x-ray on the tube placement.
So now it is 11:35 pm, it took 3 attempts to get it in, and now they are doing a x-ray to see if it is placed in the right spot. It did NOT go well. Lots of screaming and gagging. They did give her some ativan to relax her, but all it has done is make her speech slurred, and a glaze in her eye. The nurses are thinking they will need to take it out because it didn't go in the right place, but the x-ray will tell. It's going to be ugly if we have to go for try #4.
Dale, Leslie, Garrity, Seth, Ayla, and Keana arrived around 4:30 pm. We are all very excited to see them. Tonight Garrity and Seth are staying at the RMH with the kiddos while Stacy AND I are staying here with our Princess. Not exactly a hotel suite for our first night together in months, but hey, I'll take it :) My Mom and Dad are staying at Barbara Alhouse's place, a condo close to the hospital.
I guess Kylara was discharged today, hope it goes well for her. Shawn and Trista will be here for a while. They will be joining us for Thanksgiving tomorrow.
Thank you for your great comments and great ideas about the walk policy. The Doctors really do want her to go for longer walks. They see the mental and emotional benefits of the extended walks. They just need to get the policy in place before she ventures to another hospital (Stanford side). As it stands, if there was a problem on the Stanford side, they would have to call 911, with the ambulance, fire department, and emergency rooms involved, even if it was something minor (like what, I don't know).
It is amazing what a strength Ruth Friebose is to our family. If she can be home, so can Linds.
Kylara and the kids earlier today, before being discharged.
Art the Clown, ( a retired dentist from San Jose) entertaining the kids.
Hunters new trick
Tuesday, November 20, 2012
Nov 20, 5 Months Today!
Wow, how about that. 6 months ago today Lindsey and Stacy flew here from Boise. 5 months ago, June 20, she was put on the list. And we are still going strong.
I am with her at night, but don't see her much during the day. I have quite a bit of office work I am trying to get done. It's all good.
It's amazing to read back through some of those June and July posts. Un-fun days that is for sure. I am so glad our posts these days are boring. She is currently on a 'lab holiday' (no pokes) until Thursday, and no dressing change until Friday. Still haven't had any notable PVC's, Vtech, or irregular heart rhythms in weeks, and haven't had clots in months. Her appetite still stinks, but she takes the feeding tube okay.
Doctors say they are working on the hospital policy to allow Lindsey to go to the Stanford side, but hospital policies can take weeks/months. Every so often I ask about the policy and where they are at with it. I even have a note hanging in her room reminding them of the places Lindsey wants to go (Stanford Cafeteria, Stanford gift shop, Atrium, Stanford water fountain, and anywhere outside). Thank goodness they let Lindsey go outside into the LPCH center court and fountain area.
Sierra and Megan are doing good at basketball on the 'Lightning' basketball team. Starting in December they will play every Saturday. Physical exercise is so good for Sierra. She struggles with the drive to push herself whether it is exercising, school work, or making friends in California. None of those areas come very natural to her and she has to work at it. And sometimes, well most of the time, she does not want to work at it. Junior high can be a tough time, kids can say cruel things, or act in hurtful ways. Stacy and I are trying to support her and the rest of the clan the best we can. Most of the time she just wants to go home. There are some really nice people here in the church that has helped her and Megan fit in the best they can. This Lightning basketball is coached by our Bishop and he does a great job with all the kids.
Hunter keeps wanting me to mention on our blog about the Spanish he is learning. He can now count to around 20 and know several Spanish words. He is learning them from a girl in his class that lives at the RMH and rides the bus with him. There are sure a lot of girls that fancy our Hunter. Four of them live at the RMH. I've got to keep an eye on that boy!
We are starting to get more kids coming to Lindsey's room. Amanda comes around several times a day. She received a heart and liver transplant and is having some complications. She is older than our kids and plays with them well. We like having her around but hope she gets to go home soon. Also, our newest friend is Kylara, a cute 9 year old waiting for a kidney. She walks to school with Lindsey everyday and spends most of the day with no visitors or family around. She spent the afternoon with our kids playing Wacky 6 and coloring. Felt good to have Amanda and Kylara here.
Last of all, our friends the Trista and Shawn Stockwell. These are the ones from Alaska that we knew from 6 years ago. Shawn had a transplant 4 years ago. Today he was admitted onto 3 West with a 3A rejection. Ain't that just great. Remember rejection goes from 0 - 4 with 4 being the worst. So they will be here for a couple of weeks. Kinda weird, but I think we are the ONLY ones excited to have them here, just not under these circumstances. We always have to remember the highs and lows don't we. Heart transplant complications can and will go on the rest of our kid's lives, it the heavy reality of it.
Still haven't gotten used to NOT sleeping with my wife. Call me shallow, but I like that woman, and I like to have her around when I get tired.
I am grateful for what we have, and I know God is still in control. What we are all praying for is still the unthinkable for another family. Someone out there is actually going to loose their precious child in a horrible accident. How can we ask God to hurry that up? We can't, only to prepare that family to make that decision when that child is called home to his/her Heavenly Father. God bless them.
I am with her at night, but don't see her much during the day. I have quite a bit of office work I am trying to get done. It's all good.
It's amazing to read back through some of those June and July posts. Un-fun days that is for sure. I am so glad our posts these days are boring. She is currently on a 'lab holiday' (no pokes) until Thursday, and no dressing change until Friday. Still haven't had any notable PVC's, Vtech, or irregular heart rhythms in weeks, and haven't had clots in months. Her appetite still stinks, but she takes the feeding tube okay.
Doctors say they are working on the hospital policy to allow Lindsey to go to the Stanford side, but hospital policies can take weeks/months. Every so often I ask about the policy and where they are at with it. I even have a note hanging in her room reminding them of the places Lindsey wants to go (Stanford Cafeteria, Stanford gift shop, Atrium, Stanford water fountain, and anywhere outside). Thank goodness they let Lindsey go outside into the LPCH center court and fountain area.
Sierra and Megan are doing good at basketball on the 'Lightning' basketball team. Starting in December they will play every Saturday. Physical exercise is so good for Sierra. She struggles with the drive to push herself whether it is exercising, school work, or making friends in California. None of those areas come very natural to her and she has to work at it. And sometimes, well most of the time, she does not want to work at it. Junior high can be a tough time, kids can say cruel things, or act in hurtful ways. Stacy and I are trying to support her and the rest of the clan the best we can. Most of the time she just wants to go home. There are some really nice people here in the church that has helped her and Megan fit in the best they can. This Lightning basketball is coached by our Bishop and he does a great job with all the kids.
Hunter keeps wanting me to mention on our blog about the Spanish he is learning. He can now count to around 20 and know several Spanish words. He is learning them from a girl in his class that lives at the RMH and rides the bus with him. There are sure a lot of girls that fancy our Hunter. Four of them live at the RMH. I've got to keep an eye on that boy!
We are starting to get more kids coming to Lindsey's room. Amanda comes around several times a day. She received a heart and liver transplant and is having some complications. She is older than our kids and plays with them well. We like having her around but hope she gets to go home soon. Also, our newest friend is Kylara, a cute 9 year old waiting for a kidney. She walks to school with Lindsey everyday and spends most of the day with no visitors or family around. She spent the afternoon with our kids playing Wacky 6 and coloring. Felt good to have Amanda and Kylara here.
Last of all, our friends the Trista and Shawn Stockwell. These are the ones from Alaska that we knew from 6 years ago. Shawn had a transplant 4 years ago. Today he was admitted onto 3 West with a 3A rejection. Ain't that just great. Remember rejection goes from 0 - 4 with 4 being the worst. So they will be here for a couple of weeks. Kinda weird, but I think we are the ONLY ones excited to have them here, just not under these circumstances. We always have to remember the highs and lows don't we. Heart transplant complications can and will go on the rest of our kid's lives, it the heavy reality of it.
Still haven't gotten used to NOT sleeping with my wife. Call me shallow, but I like that woman, and I like to have her around when I get tired.
I am grateful for what we have, and I know God is still in control. What we are all praying for is still the unthinkable for another family. Someone out there is actually going to loose their precious child in a horrible accident. How can we ask God to hurry that up? We can't, only to prepare that family to make that decision when that child is called home to his/her Heavenly Father. God bless them.
Princess enjoying the sun
Can you guess??
The site from Monday. I guess all the yucky tissue is good. Notice the color is NOT as red. But I still think it looks nasty but improving.
Sunday, November 18, 2012
Nov 18, Sunday
Really nothing to report. But I understand, when I am home in Oregon and my daughter is attached to a life support system, I need to know there is nothing to report. Her cannula site is hurting again, and tomorrow is a dressing change. The way she is complaining, I am guessing it has flared up again, but we will see.
Church was good. Steve Young taught Sunday School. He loves to teach the gospel and does a great job at it. Michelle Hansen brought by Chinese food tonight. It was so good. Lindsey even liked the sweet-n-sour chicken. Thanks.
Excited for Thanksgiving. Mom, Dad, Aunt Garrity and Uncle Seth, and a mystery cousin are all coming down. The ward is going to help provide it. Should be really fun. We figured out where to put the Christmas tree. There is a nice corner right here in her room that will work just fine.
I brought back the kid's piano books from Oregon. Megan has been playing some of her songs on the key board in our room. I fell asleep today listening to Megan playing. Reminded us all of home.
We sure liked seeing the pictures of Ruth Friebose. Good to see her up with a smile. We all continue to pray for her.
Another 1.5 year old was just put on the Berlin. That makes 5 now. They are needing to do some transplants.
Off to church. We get Lindsey up and ready for church every Sunday even though she can't go. She likes to get dressed up like the rest of the family.
More exciting posts are bound to happen. I'm still not looking for excitement....until it is time to shave!!
Church was good. Steve Young taught Sunday School. He loves to teach the gospel and does a great job at it. Michelle Hansen brought by Chinese food tonight. It was so good. Lindsey even liked the sweet-n-sour chicken. Thanks.
Excited for Thanksgiving. Mom, Dad, Aunt Garrity and Uncle Seth, and a mystery cousin are all coming down. The ward is going to help provide it. Should be really fun. We figured out where to put the Christmas tree. There is a nice corner right here in her room that will work just fine.
I brought back the kid's piano books from Oregon. Megan has been playing some of her songs on the key board in our room. I fell asleep today listening to Megan playing. Reminded us all of home.
We sure liked seeing the pictures of Ruth Friebose. Good to see her up with a smile. We all continue to pray for her.
Another 1.5 year old was just put on the Berlin. That makes 5 now. They are needing to do some transplants.
Working on one of Nicki's puzzles. While Kimberly (the nurse) is checking the VAD
Saturday, November 17, 2012
Nov 17, Saturday, The Basement
Amazing how small Lindsey's room can feel on a Saturday afternoon. I have gone home a few times but Stacy and Lindsey have been here the whole time. After 6 months here and 5 months on the list, it just feels a bit tight in here. Honestly......sometimes Lindsey does not want to do another craft, she what's to get out of here! She was pretty sad today when the family went to the Stanford Cafeteria and she couldn't go. They still haven't cleared her for the extended walks. Today that really got her down. We all rallied behind her and she does understand.
Took the girls to their 2nd Lightning Basketball practice. They have practice on Tuesdays and Saturdays, then games start every Saturday in December.
Also took the boys on a long walk / run / adventure. We explored around the hospital Stanford side, and found a maintenance hallway in the basement. It was a long dark hallway with locked cages and chain link fencing on the sides. There was also used medical beds and equipment and even a CPR dummy. Great place for the next spook alley. I suggested to the boys that that may be where they take little boys who don't act very nice, or maybe there were lots of bones and old people in the cages. That had Hunter and Gage right by my side. If someone would have walked out they would have flipped. I was having fun with it. Some would say that was kinda mean, but they had been driving me nuts!
How about them Aggies! Go Utah State! (To bad about them cougs, bummer;) There was a lot of buzz around here about the Oregon / Stanford game. Wow that is a bummer.
Took the girls to their 2nd Lightning Basketball practice. They have practice on Tuesdays and Saturdays, then games start every Saturday in December.
Also took the boys on a long walk / run / adventure. We explored around the hospital Stanford side, and found a maintenance hallway in the basement. It was a long dark hallway with locked cages and chain link fencing on the sides. There was also used medical beds and equipment and even a CPR dummy. Great place for the next spook alley. I suggested to the boys that that may be where they take little boys who don't act very nice, or maybe there were lots of bones and old people in the cages. That had Hunter and Gage right by my side. If someone would have walked out they would have flipped. I was having fun with it. Some would say that was kinda mean, but they had been driving me nuts!
How about them Aggies! Go Utah State! (To bad about them cougs, bummer;) There was a lot of buzz around here about the Oregon / Stanford game. Wow that is a bummer.
Friday, November 16, 2012
Nov 15, Day 150, PT's - Minute to Win It
Jason here.
Gage and I left our home Friday a 3:30 am to catch a plane out of Boise back to San Jose. It is always a bitter sweet feeling each time I come back. We have such a nice home, family, neighbors, community, school, work all there waiting for us and supporting us. Its hard to leave all that, but yet this is where my family is at, this is where my 8 year old is hooked to a life support system. This is where I need and want to be. I have a little princess 8 feet from me and 4 other kids 3 blocks from here all sleeping well because there parents are here. Stacy and I both have a gut feeling that the transplant will happen sometime in late December. It's just a feeling, nothing else, we will have to see.
It was good to see family and friends back home. We get so wrapped up in our little world here, it is good to see life is still going on full steam ahead. I am still humbled each time we receive a letter of support for our little princess. There are so many good people out there.
Never did get to see my cousin Debbie Dorny. She drove up from LA with her 7 year old to be here while I was gone. Stacy said she was awesome and did a great job jumping into the groove. Thanks Debbie.
Lindsey is doing great. Her VAD site looks better? Who knows, but they are doing dressing changes 3 days a week. She doesn't have another one until Monday. They have upped her feeding to 140 ml per hour, up from 132 per hour. She is tolerating it well, I can't imagine being fed by a tube ALL night long. ugg. But her appetite just isn't there. She had a lot of fun in physical therapy today. It was 'Friday Fun Day'. Sandra and Mandi sent her an invitation to Minute to Win It. She (and her parents) did a bunch of timed activities. She was screaming and having a good time.
Stacy is doing well. I don't know why she hasn't gone nuts, she and Lindsey have been here since May 21, but she is strong as can be.
Jeff Yeck and I were talking last week when they were here. Besides laughing, texting pictures to our old college friends, and acting like ourselves, we did have a few serious conversations. We talked about how it must be like for the future donor family. What a horrible tragedy that will happen. To suddenly loose their perfectly healthy 6-8 year old. Then to have the conscience of mind to be able to donate life saving organs. When your really think about it, what a horrible experience the future donor family will be going through. Since then, I have been a bit more sincere and thoughtful in my prayers for the donor family.
Prayers have been answered, prayers will be answered, all in the Lords time.
Gage and I left our home Friday a 3:30 am to catch a plane out of Boise back to San Jose. It is always a bitter sweet feeling each time I come back. We have such a nice home, family, neighbors, community, school, work all there waiting for us and supporting us. Its hard to leave all that, but yet this is where my family is at, this is where my 8 year old is hooked to a life support system. This is where I need and want to be. I have a little princess 8 feet from me and 4 other kids 3 blocks from here all sleeping well because there parents are here. Stacy and I both have a gut feeling that the transplant will happen sometime in late December. It's just a feeling, nothing else, we will have to see.
It was good to see family and friends back home. We get so wrapped up in our little world here, it is good to see life is still going on full steam ahead. I am still humbled each time we receive a letter of support for our little princess. There are so many good people out there.
Never did get to see my cousin Debbie Dorny. She drove up from LA with her 7 year old to be here while I was gone. Stacy said she was awesome and did a great job jumping into the groove. Thanks Debbie.
Lindsey is doing great. Her VAD site looks better? Who knows, but they are doing dressing changes 3 days a week. She doesn't have another one until Monday. They have upped her feeding to 140 ml per hour, up from 132 per hour. She is tolerating it well, I can't imagine being fed by a tube ALL night long. ugg. But her appetite just isn't there. She had a lot of fun in physical therapy today. It was 'Friday Fun Day'. Sandra and Mandi sent her an invitation to Minute to Win It. She (and her parents) did a bunch of timed activities. She was screaming and having a good time.
Stacy is doing well. I don't know why she hasn't gone nuts, she and Lindsey have been here since May 21, but she is strong as can be.
Jeff Yeck and I were talking last week when they were here. Besides laughing, texting pictures to our old college friends, and acting like ourselves, we did have a few serious conversations. We talked about how it must be like for the future donor family. What a horrible tragedy that will happen. To suddenly loose their perfectly healthy 6-8 year old. Then to have the conscience of mind to be able to donate life saving organs. When your really think about it, what a horrible experience the future donor family will be going through. Since then, I have been a bit more sincere and thoughtful in my prayers for the donor family.
Prayers have been answered, prayers will be answered, all in the Lords time.
Let the games begin
Yes, that is six!
A VERY funny picture of Shannon cheering on Lindsey. We can't stop laughing at this one. She is a high energy nurse that takes great care of Lindsey and Lindsey just loves her (among many other nurses)!
Very focused
Had to get 5 feathers into the hoop with a plate.
Had to move the moth balls with her nose and Vaceline.
The gold metal stand
The Gold Metal
Of course the site. She is broke out from all the cleanings. ugg
Picture from back home. Snow is gone now.
Kevin Murphy who received a transplant about 4 years ago. Here for a biopsy and checkup.
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