8:30 am.
Lindsey slept good, but there are some weird things going with her heart.
1) Her heart is throwing more pvc's, a whole bunch of them in a row. They don't care about the stray irregular heart beats (pvc) but when she has a string of them, now they take notice.
2) Her L-VAD (Berlin Pump) wasn't filling all the way, so they had to give her some IV fluids twice. When they did this, it started filling properly.
3) The Berlin continues to give that 'Check left pump and driving tube!'. I did use ear plugs last night and it seemed to take the edge off. But it still went off 4-5 times last night.
4) The nurse and fellow on call want to put the feeding tube back in. There are more arguments for doing it as issues start to rise.
She is still acting good and working on her first 'shake'. Still planning on school and PT. No fevers and good blood pressure. The doctors will discuss all the above today in rounds.
As long as they take this stuff serious before it turns into something serious.... then I'm ok with it.
Amazing how fast things can change.
ALL this aside, which you can't do, we have Sandy Cummings and Keith Morrison from NBC here filming various aspects of our day. They showed up at 6:30 this morning to record us doing our 'morning thing'. We had eggs and toast and Hunter gave the morning prayer. We 'tried' to carry on a normal conversation about school, volleyball, Lindsey, and the day with the cameras rolling. Then they filmed Sierra, Megan and Hunter heading off to school. Now they are here right now to film us doing our 'morning thing' with Lindsey including school and PT. I have told them, the doctors and nurses, and everyone else, that Lindsey comes first, no exceptions! They have been very respectful of that and better be. Later on they are interviewing Bernstein, Mary Burge, Katz and others.
I will report back as we find out more.
Friday, August 31, 2012
Thursday, August 30, 2012
Aug 30, Time for ear plugs
10:10 pm
Dang good day here at LPCH. Lindsey slept well last night, better than I did.
Her Berlin still alarmed 3-4 times last night. They are all very confused as to why. Every time the message says 'Check left tube and driving pump!' They have called Berlin and continue to check Lindsey out, and she is checking out fine. Whatever it is, it only happens at night, when we are trying to sleep. I'm not complaining, I just got some earplugs for tonight (really I did). I will sleep a lot better when they have my child's life support system figured out.
She has also thrown quite a few pvc's, or irregular heart beats today. It is something they watch pretty close, along with a lot of other stuff. For some reason they were pretty concerned about it earlier today, but tonight it backed way off. So who knows? Remember Stacy and I are just the cheerleaders and support squad. We will let the doctors worry about the rest.
Had all the major doctors in here this morning looking at a potential blood clot. It's been over a month since the last clot, but they are still watching for them. This one isn't developing (yet), so false alarm, but it always makes you a little nervous when Katz, Rosenthal, and Bernstein all come in for a visit.
Still haven't put in the feeding tube. As long as she continues to increase her food intake they want to leave it out. She is down to 20.3 Kilos, down from 21.7. In our language that is about 45 pounds down from 48 lbs. They still believe the benefits of keeping it out outweigh the other, but it wouldn't take much for them to put it back in. She really enjoys having the tube out, but it is such a burden to eat. If we didn't push the food down her with a broom handle, she would starve and not give it a second thought.
Having said ALL that, she really did have a great day. Went to both sessions of school, rode a bike around for physical therapy, she is happy and positive, went to the library, drank 4.5 pediasures and other food, and is currently jabbering with her nurse and showing her pictures of our home in Oregon. I am so grateful for the doctors and nurses who help her have a good day while watching so many things about her. We really do have angels watching over her, from Grandma Roach and Mrs A to wonderful doctors and nurses.
Sierra brought home a paper from school regarding 'Math Night' on Sept 13. A required event to attend. Wow, you could see the excitement just bubbling out of our oldest daughter. Hang in there Bug.
I am planning to head home next week after Gage's appointment and Sierra biopsy / IV infusion on Wednesday. Be there to check in, go to the office, gather up some work, and get back down here.
Excited to have Jake and Wendy and their gang here this weekend. Hopefully Lindsey will continue to feel good and we can all have good time. Thank you for your comments, we read each one.
Dang good day here at LPCH. Lindsey slept well last night, better than I did.
Her Berlin still alarmed 3-4 times last night. They are all very confused as to why. Every time the message says 'Check left tube and driving pump!' They have called Berlin and continue to check Lindsey out, and she is checking out fine. Whatever it is, it only happens at night, when we are trying to sleep. I'm not complaining, I just got some earplugs for tonight (really I did). I will sleep a lot better when they have my child's life support system figured out.
She has also thrown quite a few pvc's, or irregular heart beats today. It is something they watch pretty close, along with a lot of other stuff. For some reason they were pretty concerned about it earlier today, but tonight it backed way off. So who knows? Remember Stacy and I are just the cheerleaders and support squad. We will let the doctors worry about the rest.
Had all the major doctors in here this morning looking at a potential blood clot. It's been over a month since the last clot, but they are still watching for them. This one isn't developing (yet), so false alarm, but it always makes you a little nervous when Katz, Rosenthal, and Bernstein all come in for a visit.
Still haven't put in the feeding tube. As long as she continues to increase her food intake they want to leave it out. She is down to 20.3 Kilos, down from 21.7. In our language that is about 45 pounds down from 48 lbs. They still believe the benefits of keeping it out outweigh the other, but it wouldn't take much for them to put it back in. She really enjoys having the tube out, but it is such a burden to eat. If we didn't push the food down her with a broom handle, she would starve and not give it a second thought.
Having said ALL that, she really did have a great day. Went to both sessions of school, rode a bike around for physical therapy, she is happy and positive, went to the library, drank 4.5 pediasures and other food, and is currently jabbering with her nurse and showing her pictures of our home in Oregon. I am so grateful for the doctors and nurses who help her have a good day while watching so many things about her. We really do have angels watching over her, from Grandma Roach and Mrs A to wonderful doctors and nurses.
Sierra brought home a paper from school regarding 'Math Night' on Sept 13. A required event to attend. Wow, you could see the excitement just bubbling out of our oldest daughter. Hang in there Bug.
I am planning to head home next week after Gage's appointment and Sierra biopsy / IV infusion on Wednesday. Be there to check in, go to the office, gather up some work, and get back down here.
Excited to have Jake and Wendy and their gang here this weekend. Hopefully Lindsey will continue to feel good and we can all have good time. Thank you for your comments, we read each one.
Lindsey and Grandma playing 'Trash', and having a good time.
Her ordering from the menu. Yes this was a big deal. She ordered apples and peanut butter, gummy bears, a pickle and water. She took a few bites of the apple.
This is it, Room 3241.
Wednesday, August 29, 2012
Aug 29, Parent's night at Jordan and the Berlin alarms
11:50 pm.
Well it been a long 70 days on the transplant list. We haven't hit the magical 3 month mark yet. One of these days we will have the exciting news that a donor heart is available, but not today.
Lindsey still does NOT have the feeding tube back in. They are ok with her drinking her pediasures (4.5 today), pickles (only a few bites today), and a small bowl of spaghettios. She has lost a little weight, about a kilo, but having the feeding tube out and allowing her face, nose, throat and tummy to adjust back to normal is worth it so far. She had a dang good day. Went to both sessions of school and took good walks.
The Berlin machine has been acting weird the last 2 nights. In the middle of the night the alarm goes off and says 'Check left side pump and tubing'. It has done this 3-4 times a night. Lindsey actually sleeps through it and dear ole Dad comes flying out of bed. 2-3 nurses race in each time, grab the flash light and mirror and start looking over the Berlin, tubing, and machine. Each time they don't see anything. They have called the Berlin company and have sent data, but nothing yet. They did an echo and x-ray today to see if there is something wrong at the canula sites, where the Berlin inserts into the heart, to see if there are leaks, bleeding or other problems, but didn't find anything. They even switched the machine with the replacement, and the replacement also went off with the same error. So far they have ruled out the major problems, but can't put their finger on the solution yet. I guess I need some ear plugs. See how tonight goes.
It was the parent back to school night at Jordan Middle School. My mother took care of the kids (thanks), and Lindsey was on her own for a while. At Jordan I had Sierra's school schedule and Stacy had Megan's. We went around to their classes for a 15 minute presentation. We would go to period 1 (English), hear the teacher's presentation, the bell would ring, 5 minutes to find period 2, and so on. I don't blame Sierra for being a bit overwhelmed. Felt a lot like going to college with the spread out building and classes. I had to hustle to get to the next class. Megan stays in the same class all day and doesn't move around much. It was a great opportunity to meet the teachers and know what to look for in terms of homework, tests, and assignments. Sierra and Megan can do this. All the teachers know their situation and will help them anyway they can.
As we were walking back to our suburban we bumped into Dr. Dan Bernstein and his wife out on a walk. That was sure fun to see them outside the hospital setting. They live just down the road from Jordan.
By the time it was over we were getting phone calls from our little Princess wondering when we were coming back. She has a boy nurse tonight who she doesn't know that well and is not as fun as some of the other nurses. When I finally arrived, she had to GO! Boy did we hurry to get her into the bathroom.
Having the kids in school down here adds a whole new dimension to the waiting process. I don't know how we can support all (or any) school activities like band and sports. It was all we could do to go parent night and she was still in tears by the time we got back. Stacy and I both feel pretty strongly that we can do this. As long as we keep our priorities in check, all the other stuff is just stuff.
Well it been a long 70 days on the transplant list. We haven't hit the magical 3 month mark yet. One of these days we will have the exciting news that a donor heart is available, but not today.
Lindsey still does NOT have the feeding tube back in. They are ok with her drinking her pediasures (4.5 today), pickles (only a few bites today), and a small bowl of spaghettios. She has lost a little weight, about a kilo, but having the feeding tube out and allowing her face, nose, throat and tummy to adjust back to normal is worth it so far. She had a dang good day. Went to both sessions of school and took good walks.
The Berlin machine has been acting weird the last 2 nights. In the middle of the night the alarm goes off and says 'Check left side pump and tubing'. It has done this 3-4 times a night. Lindsey actually sleeps through it and dear ole Dad comes flying out of bed. 2-3 nurses race in each time, grab the flash light and mirror and start looking over the Berlin, tubing, and machine. Each time they don't see anything. They have called the Berlin company and have sent data, but nothing yet. They did an echo and x-ray today to see if there is something wrong at the canula sites, where the Berlin inserts into the heart, to see if there are leaks, bleeding or other problems, but didn't find anything. They even switched the machine with the replacement, and the replacement also went off with the same error. So far they have ruled out the major problems, but can't put their finger on the solution yet. I guess I need some ear plugs. See how tonight goes.
It was the parent back to school night at Jordan Middle School. My mother took care of the kids (thanks), and Lindsey was on her own for a while. At Jordan I had Sierra's school schedule and Stacy had Megan's. We went around to their classes for a 15 minute presentation. We would go to period 1 (English), hear the teacher's presentation, the bell would ring, 5 minutes to find period 2, and so on. I don't blame Sierra for being a bit overwhelmed. Felt a lot like going to college with the spread out building and classes. I had to hustle to get to the next class. Megan stays in the same class all day and doesn't move around much. It was a great opportunity to meet the teachers and know what to look for in terms of homework, tests, and assignments. Sierra and Megan can do this. All the teachers know their situation and will help them anyway they can.
As we were walking back to our suburban we bumped into Dr. Dan Bernstein and his wife out on a walk. That was sure fun to see them outside the hospital setting. They live just down the road from Jordan.
By the time it was over we were getting phone calls from our little Princess wondering when we were coming back. She has a boy nurse tonight who she doesn't know that well and is not as fun as some of the other nurses. When I finally arrived, she had to GO! Boy did we hurry to get her into the bathroom.
Having the kids in school down here adds a whole new dimension to the waiting process. I don't know how we can support all (or any) school activities like band and sports. It was all we could do to go parent night and she was still in tears by the time we got back. Stacy and I both feel pretty strongly that we can do this. As long as we keep our priorities in check, all the other stuff is just stuff.
Tuesday, August 28, 2012
Aug 28, Pretty good day
10:20 pm.
She had a pretty good day. They lifted the complete isolation this morning. She went to physical therapy and school. She drank 4.5 PediaSures which was barely enough to keep the feeding tube out. Although she fights the meds and eating so much, she almost wants the feeding tube in. See how tomorrow goes. She did get an IV, but she still didn't flinch and watched the whole thing.
I stayed at the RMH all day and worked. Felt really nice. Grandma was a big help today. Stacy and I went to Hunter's school for a parent teacher get to know you night. It was good to see how they do things. Tell you what, Nixon doesn't have a thing over PV school.
Tomorrow is Sierra and Megan's parent day. Sierra hasn't exactly 'embraced' the new school atmosphere. Hopefully she will find her groove and feel better about it. Megan is just fine, she just wants to know when the volleyball practices start. (No, we don't know if she is on the team).
So, we are not back to the full boring but getting close. Lindsey is hanging in there, but is sure getting tired of this. She still needs good support from Mom and Dad and others to keep her going.
She had a pretty good day. They lifted the complete isolation this morning. She went to physical therapy and school. She drank 4.5 PediaSures which was barely enough to keep the feeding tube out. Although she fights the meds and eating so much, she almost wants the feeding tube in. See how tomorrow goes. She did get an IV, but she still didn't flinch and watched the whole thing.
I stayed at the RMH all day and worked. Felt really nice. Grandma was a big help today. Stacy and I went to Hunter's school for a parent teacher get to know you night. It was good to see how they do things. Tell you what, Nixon doesn't have a thing over PV school.
Tomorrow is Sierra and Megan's parent day. Sierra hasn't exactly 'embraced' the new school atmosphere. Hopefully she will find her groove and feel better about it. Megan is just fine, she just wants to know when the volleyball practices start. (No, we don't know if she is on the team).
So, we are not back to the full boring but getting close. Lindsey is hanging in there, but is sure getting tired of this. She still needs good support from Mom and Dad and others to keep her going.
Monday, August 27, 2012
Aug 27, We busted out
11:00 pm.
So they lifted her 'lock down' status this morning, as long as she didn't lick the toys. Still can't go into the playrooms or school but walks are ok. I'm good with that until all the tests are back. Shortly after we went on our morning walk, about 60 feet down the hall, she threw up. She threw up so hard her feeding tube came out. So we decided to come back to her room and take a little break. After a few games of Plants vs Zombies she was ready for a walk. A 7 lap walk no doubt! She did great. They say with the feeding tube feeds and the Berlin heart, her tummy sometimes just gets tired of it and reverses everything.
They decided to give her a feeding tube vacation for a day. Lets see if she can eat enough on her own to keep that thing out. So far today she has drank 2.5 PediaSures, a small glass of gaterade, some grapes and peaches, and a dill pickle (whatever.....that's what she wanted). If she doesn't eat a pretty good breakfast, she will probably need the feeding tube back in.
Tonight she had to take her oral meds by mouth. All good except the liquid Iron. If you have ever had to take iron to help rebuild blood cells you know how nasty that tastes. I think she drank 1/2 a PediaSure chasing that iron down. I taste all her meds just to know, and iron is by far the worst!
Her IV has blown, (doesn't work anymore) so tonight they are taking out the wrist IV and will restart another one tomorrow when needed. She finished her antibiotics so that was good timing.
Tonight Lindsey may sleep well. She doesn't have any IV's or feeding tubes, only the Berlin and heart monitors. Sleep tight my Princess. Tomorrow they may and probably will start an IV and feeding tube.
She has been asking a lot of questions about the transplant process and what has happened to her so far. Last night she sat on my lap and I showed pictures of her from when she received the Berlin, chest tubes, the vent, and all the IV's and complications. She had forgotten what had happened and wanted to know. By the time we were done she was in tears but still wanted to know. She hadn't seen herself before, it was quite a tender experience for both of us. We also went into great depth about the transplant process from the donor to her waking up. She even wanted to know what tool they will use to cut her chest open with. I told her my Husqvarna 455 chainsaw (which I miss dearly). She rolled her eyes at me, she didn't buy that.
My mom is staying the week with us to help out. This week we have 'Back to School night' for the parents. We get to go to Jordan Middle School and Nixon, meet the teachers, and get a feel for what they have going on. We both need to go to that and mom is going to help with the kids. Thanks Mother Dear!
So they lifted her 'lock down' status this morning, as long as she didn't lick the toys. Still can't go into the playrooms or school but walks are ok. I'm good with that until all the tests are back. Shortly after we went on our morning walk, about 60 feet down the hall, she threw up. She threw up so hard her feeding tube came out. So we decided to come back to her room and take a little break. After a few games of Plants vs Zombies she was ready for a walk. A 7 lap walk no doubt! She did great. They say with the feeding tube feeds and the Berlin heart, her tummy sometimes just gets tired of it and reverses everything.
They decided to give her a feeding tube vacation for a day. Lets see if she can eat enough on her own to keep that thing out. So far today she has drank 2.5 PediaSures, a small glass of gaterade, some grapes and peaches, and a dill pickle (whatever.....that's what she wanted). If she doesn't eat a pretty good breakfast, she will probably need the feeding tube back in.
Tonight she had to take her oral meds by mouth. All good except the liquid Iron. If you have ever had to take iron to help rebuild blood cells you know how nasty that tastes. I think she drank 1/2 a PediaSure chasing that iron down. I taste all her meds just to know, and iron is by far the worst!
Her IV has blown, (doesn't work anymore) so tonight they are taking out the wrist IV and will restart another one tomorrow when needed. She finished her antibiotics so that was good timing.
Tonight Lindsey may sleep well. She doesn't have any IV's or feeding tubes, only the Berlin and heart monitors. Sleep tight my Princess. Tomorrow they may and probably will start an IV and feeding tube.
She has been asking a lot of questions about the transplant process and what has happened to her so far. Last night she sat on my lap and I showed pictures of her from when she received the Berlin, chest tubes, the vent, and all the IV's and complications. She had forgotten what had happened and wanted to know. By the time we were done she was in tears but still wanted to know. She hadn't seen herself before, it was quite a tender experience for both of us. We also went into great depth about the transplant process from the donor to her waking up. She even wanted to know what tool they will use to cut her chest open with. I told her my Husqvarna 455 chainsaw (which I miss dearly). She rolled her eyes at me, she didn't buy that.
My mom is staying the week with us to help out. This week we have 'Back to School night' for the parents. We get to go to Jordan Middle School and Nixon, meet the teachers, and get a feel for what they have going on. We both need to go to that and mom is going to help with the kids. Thanks Mother Dear!
Feeding Tube free! (for now)
Sunday, August 26, 2012
Aug 26, Sunday, Still stuck in the Room....
....and that is a good problem to have.
Jason here. I slept here last night. She was up at 3 and 4, mostly needed to go potty. Her fever has backed off and she is feeling a lot better. That's all good. Grandma stayed here with her while the rest of us went to church today.
When we got here after church she was feeling good and ready for a walk. This is where I expressed my concerns. She is still quarantined to her room until Infection Control releases her. That really bugs me. When we go for a walk she is masked with a N95 mask, she doesn't touch anything, and especially doesn't come in contact with anyone. She hasn't had a fever for 1.5 days and they still won't let her out of the room for a simple walk. The nurse and fellow on call have tried to plead our case, but the Infection Control Team doesn't come around until tomorrow. In a very nice 'professional' way I would like to express my concerns and get more information as to why our daughter can't ambulate (walk) when she finally feels like it. I understand not going to the playroom, licking the toys, slobbering on the games, and other stuff, but a simple walk with a mask on? What's up with that? So it has been very unfun (if that is a word) to be stuck in the room especially when Dallee Jo, Grandma and Grandpa are here, but a good problem to have since she is feeling better.
I was proud of Dallee Jo and Sierra. Grandpa and Grandma took the kids out to play and burn some energy, but Dallee Jo and Sierra volunteered to stay with Lindsey and keep her company. I was pretty proud of them.
All the frustration aside, I am grateful for Lindsey's health and how well she is doing and handling all this. Thank you for your prayers, love and concern. I still truly believe God hears our sincere prayers. I still pray for the same 3 items I started with several months ago; 1 - Lindsey's body will stay strong, 2- the Doctors will be inspired and use wisdom in the treatment of our daughter, and 3 - the donor family is being prepared to make the ultimate decision. God continues to answer these prayers and I am grateful for that.
Jason here. I slept here last night. She was up at 3 and 4, mostly needed to go potty. Her fever has backed off and she is feeling a lot better. That's all good. Grandma stayed here with her while the rest of us went to church today.
When we got here after church she was feeling good and ready for a walk. This is where I expressed my concerns. She is still quarantined to her room until Infection Control releases her. That really bugs me. When we go for a walk she is masked with a N95 mask, she doesn't touch anything, and especially doesn't come in contact with anyone. She hasn't had a fever for 1.5 days and they still won't let her out of the room for a simple walk. The nurse and fellow on call have tried to plead our case, but the Infection Control Team doesn't come around until tomorrow. In a very nice 'professional' way I would like to express my concerns and get more information as to why our daughter can't ambulate (walk) when she finally feels like it. I understand not going to the playroom, licking the toys, slobbering on the games, and other stuff, but a simple walk with a mask on? What's up with that? So it has been very unfun (if that is a word) to be stuck in the room especially when Dallee Jo, Grandma and Grandpa are here, but a good problem to have since she is feeling better.
I was proud of Dallee Jo and Sierra. Grandpa and Grandma took the kids out to play and burn some energy, but Dallee Jo and Sierra volunteered to stay with Lindsey and keep her company. I was pretty proud of them.
All the frustration aside, I am grateful for Lindsey's health and how well she is doing and handling all this. Thank you for your prayers, love and concern. I still truly believe God hears our sincere prayers. I still pray for the same 3 items I started with several months ago; 1 - Lindsey's body will stay strong, 2- the Doctors will be inspired and use wisdom in the treatment of our daughter, and 3 - the donor family is being prepared to make the ultimate decision. God continues to answer these prayers and I am grateful for that.
Saturday, August 25, 2012
Aug 25, Dallee Jo is here
6:40 pm.
No real good or bad news to share. Stacy stayed here last night. Long night, threw up a couple of times. Fever still here but is being controlled with Tylenol. Tummy still hurts but no more vomiting... yet. They are doing a bunch more test to try and figure out the problem, more blood, urine, and stool samples.
Nice to have Dale, Leslie and Dalley Jo here. They took the kids and went to Half Moon Bay and had a great time. Stacy and I stayed here with the Princess. Lindsey and I played Wacky 6 and Nerts and listened to music. Lindsey has been quarantined to her room until they get a handle on her sickness. She has been in good spirits most of the day, but we are all getting tired of the 'beeping' and this room. Need to get her back on her walks. Wish we knew more but don't.
No real good or bad news to share. Stacy stayed here last night. Long night, threw up a couple of times. Fever still here but is being controlled with Tylenol. Tummy still hurts but no more vomiting... yet. They are doing a bunch more test to try and figure out the problem, more blood, urine, and stool samples.
Nice to have Dale, Leslie and Dalley Jo here. They took the kids and went to Half Moon Bay and had a great time. Stacy and I stayed here with the Princess. Lindsey and I played Wacky 6 and Nerts and listened to music. Lindsey has been quarantined to her room until they get a handle on her sickness. She has been in good spirits most of the day, but we are all getting tired of the 'beeping' and this room. Need to get her back on her walks. Wish we knew more but don't.
Friday, August 24, 2012
Aug 24, Still yucky
9:40pm.
Update before bed. Fever has been hanging around all day. Currently she has a fever of 101, and feeling nauseous. She went on one small walk and to morning session of school, but has been down the rest of the day. She has retained fluids, threw up, looks pale, and has diarrhea. Dale, Leslie, and Dalley Jo should be here in about an hour to visit this weekend.
They have her on several meds including IV lasix. Hopefully she will feel better as she pees off some of this extra fluid. They have taken blood and stool samples to test for infection.
Stacy is staying with Lindsey tonight. Could be a long one. Hopefully we will have a better report tomorrow.
Update before bed. Fever has been hanging around all day. Currently she has a fever of 101, and feeling nauseous. She went on one small walk and to morning session of school, but has been down the rest of the day. She has retained fluids, threw up, looks pale, and has diarrhea. Dale, Leslie, and Dalley Jo should be here in about an hour to visit this weekend.
They have her on several meds including IV lasix. Hopefully she will feel better as she pees off some of this extra fluid. They have taken blood and stool samples to test for infection.
Stacy is staying with Lindsey tonight. Could be a long one. Hopefully we will have a better report tomorrow.
Aug 24, In Memory of Ervin
10:00 am
Stacy here. Thank you for the comments. They all help.
Lindsey slept well last night. She has awaken this morning cheery and chipper. Her temperature has started to climb again, around 99.8 but we will wait and see how high it gets. Still a little nauseous this morning, hoping that will pass. They turned her feeds down during the night because she was complaining of tummy aches and we wanted her to sleep. We will discuss at rounds how to help her get nutrition and not have the nausea. Nutrition is highly important, because we want her staying strong for her new heart. I think she is slowly getting better, definitely on the up wave of this roller coaster she rides. Jason stuck up big time for his princess last night. They wanted to do a lab draw on Lindsey for her antibiotics. With her picc line out, she now has to be poked for all lab draws. We were told that she would not have to be poked for 2 days and they would restart her picc line then. Jason told the nurse, "I want hear from Dr. Hollander himself, that she needs this poke." The nurse called the doctor and they decided that she didn't need the blood draw. Yeahhh!! Way to go dad. Don't worry Lindsey we always have your back.
Yesterday we had the fun privilege of meeting Roxanne, her daughter Ava and Amy from Las Vegas. Ava received a heart transplant 7 years ago when she was 14 months old. They waited for 6 months for a heart transplant. Ava and Lindsey are the same age and same grade. It was a lot of fun to meet and visit with them. I could see Ava and Lindsey having a great relationship together. Thank you for visiting with us and the fun goodies, Roxanne and Amy.
Sierra and Megan both had great days at school. They finally received their lockers, so they don't have to carry the heavy back packs all day at school. It was really funny, Sierra was having trouble getting her locker open. A boy asked her if she needed some help and she said yes. So, as she is telling us this story, Megan pipes in and says, "you gave a boy your lock combo?" Sierra says proudly, "No, I gave THREE boys my combo." We all burst out laughing and Sierra was very embarrassed. That was not what she was implying at all. She had to have three people help her to get her locker open before she finally figured out how to do it.
Today Grandma and Grandpa Bingham and Dallee Jo are on their way to visit until Monday. We are very excited to see them. On a little bit of a downer note, I received a text last night from my sister, Holly, that her husband, Ervin, had passed away. We don't know any of the details, but he will be missed. I feel so horrible that I can't be there to offer comfort to my sister at this time, and wish I could be there to hug her. Holly, you are an amazing sister. I am so lucky that I had you as an example to me my whole life. Hold Mya and Morris for me! I am so sorry!! I can't even imagine going through this without my husband by my side.
Stacy here. Thank you for the comments. They all help.
Lindsey slept well last night. She has awaken this morning cheery and chipper. Her temperature has started to climb again, around 99.8 but we will wait and see how high it gets. Still a little nauseous this morning, hoping that will pass. They turned her feeds down during the night because she was complaining of tummy aches and we wanted her to sleep. We will discuss at rounds how to help her get nutrition and not have the nausea. Nutrition is highly important, because we want her staying strong for her new heart. I think she is slowly getting better, definitely on the up wave of this roller coaster she rides. Jason stuck up big time for his princess last night. They wanted to do a lab draw on Lindsey for her antibiotics. With her picc line out, she now has to be poked for all lab draws. We were told that she would not have to be poked for 2 days and they would restart her picc line then. Jason told the nurse, "I want hear from Dr. Hollander himself, that she needs this poke." The nurse called the doctor and they decided that she didn't need the blood draw. Yeahhh!! Way to go dad. Don't worry Lindsey we always have your back.
Yesterday we had the fun privilege of meeting Roxanne, her daughter Ava and Amy from Las Vegas. Ava received a heart transplant 7 years ago when she was 14 months old. They waited for 6 months for a heart transplant. Ava and Lindsey are the same age and same grade. It was a lot of fun to meet and visit with them. I could see Ava and Lindsey having a great relationship together. Thank you for visiting with us and the fun goodies, Roxanne and Amy.
Sierra and Megan both had great days at school. They finally received their lockers, so they don't have to carry the heavy back packs all day at school. It was really funny, Sierra was having trouble getting her locker open. A boy asked her if she needed some help and she said yes. So, as she is telling us this story, Megan pipes in and says, "you gave a boy your lock combo?" Sierra says proudly, "No, I gave THREE boys my combo." We all burst out laughing and Sierra was very embarrassed. That was not what she was implying at all. She had to have three people help her to get her locker open before she finally figured out how to do it.
Today Grandma and Grandpa Bingham and Dallee Jo are on their way to visit until Monday. We are very excited to see them. On a little bit of a downer note, I received a text last night from my sister, Holly, that her husband, Ervin, had passed away. We don't know any of the details, but he will be missed. I feel so horrible that I can't be there to offer comfort to my sister at this time, and wish I could be there to hug her. Holly, you are an amazing sister. I am so lucky that I had you as an example to me my whole life. Hold Mya and Morris for me! I am so sorry!! I can't even imagine going through this without my husband by my side.
Thursday, August 23, 2012
Aug 23, Thursday, We are pulling the picc
3:00 pm.
Her fever has slowly increased and is now at 102.6. Her heart rate and breathing has increased, which happens with the fever. She still feels nauseous but hasn't thrown up, even after discontinuing her feeds for 36 hours. Basically she hasn't eaten for 1.5 days. To the rest of us, this is not a big deal, but to a girl on the Berlin, it is. She is on day 8 of 10 on IV antibiotics. So there isn't a major roaring infection. In rounds this morning they took a fresh look at everything she has going on, meds, feeds, fluid, blood counts, etc. Interesting how the young MD's rattle off a lot of stuff and the more experienced doctors boil it down to 2-3 items and then ask Stacy and I questions. She slept good last night, but has felt lousy all day. She went to school, again kicking and screaming, and even did a little therapy. But as the fever has increased, her energy has gone down.
They have just now decided to pull the picc line and start a regular IV. The picc line has been in for 70 days and could be the cause of the fever. Lindsey is pretty upset and crying because now she will have to be poked for blood draws and IV's. They have also discontinued one of the clotting meds. They started a 3rd clotting med on Monday afternoon and by Tuesday morning the tummy pain and nausea had started. So they are going to discontinue that med and see if that helps. Her blood count is down around the 23 mark and she is flirting with a blood transfusion. It's amazing when she is not feeling well, how much the monitor goes off. It 'beeps' warning as her pulse and breathing raises from the high fever. So as I am typing this, I keep turning around to see why the monitor is going off. Stacy is calmly sitting over there with her legs folded reading 'A Gable Faces East' trying not to fall asleep. I'm so glad (lucky) I married that woman.
So basically they are going to: 1- Pull the picc line, 2- start a new 'regular' IV, 3- discontinue the 3rd blood clotting med, 4-hold off on all blood draws for 48 hours, and 5-start the feeding. Hopefully this will help with the fever, nausea, and low blood count. Other than that, she is doing just hunky dory! Hunter and Gage is driving her nuts, and nothing is funny to her right now. She should be back to 'Jabber Jaws' when she is felling better.
Sierra is getting the 'Baptism by Fire' at Jordan Middle School. Her homework has hit. We are still trying to find the best routine for her and Megan to do their homework. They both really want to be here with Lindsey, but there is just too much chaos. One of us will need to go home with them to the RMH so they can focus. They are still trying to find their place in a big school and new environment. Lunch has been a pretty lonely time, but they are figuring it out. They both really miss PV and their friends. Today I rode halfway with them on the bikes to Hansen's, they just wanted help getting to and across El Camino. I figured so, it was time.
Been a bit discouraged today. I know we are blessed, that God does and has heard and answered our (and your) prayers. Lindsey is doing so much better than before. All I have to do is look at posts from late June early July to see that. But.... I try so hard to help Lindsey on walks, going potty, and coping with her situation. I keep wondering how long this will go on? How many more weeks / months? How long before the donor and the donor's family is prepared. Lindsey is strong, but she needs her Mom and Dad here to keep her strong. (more beeping) Last night Stacy and I both went home to get the boys to bed and help Sierra and Megan with homework. By the time I got back to Lindsey, she was all worked up in tears and feeling lousy. I'm still sleeping here with Lindsey, and probably will for awhile. Even when she feels good, she sleeps better knowing someone is here. Who knows when Stacy and I will actually sleep together. I'm also gaining weight and that is tickin' me off!
So there you have it. Sometimes I just need to vent. I know it will all work out, that God is in control and we will be stronger for it. I know that and truly believe it. We have wonderful people back home and here in Palo Alto supporting us. But sometimes this just sticks!
Enough pitty party. I feel better now. They are here to start the IV, and I need to go pick up the girls from Hansen's place and get them home to start homework.
Her fever has slowly increased and is now at 102.6. Her heart rate and breathing has increased, which happens with the fever. She still feels nauseous but hasn't thrown up, even after discontinuing her feeds for 36 hours. Basically she hasn't eaten for 1.5 days. To the rest of us, this is not a big deal, but to a girl on the Berlin, it is. She is on day 8 of 10 on IV antibiotics. So there isn't a major roaring infection. In rounds this morning they took a fresh look at everything she has going on, meds, feeds, fluid, blood counts, etc. Interesting how the young MD's rattle off a lot of stuff and the more experienced doctors boil it down to 2-3 items and then ask Stacy and I questions. She slept good last night, but has felt lousy all day. She went to school, again kicking and screaming, and even did a little therapy. But as the fever has increased, her energy has gone down.
They have just now decided to pull the picc line and start a regular IV. The picc line has been in for 70 days and could be the cause of the fever. Lindsey is pretty upset and crying because now she will have to be poked for blood draws and IV's. They have also discontinued one of the clotting meds. They started a 3rd clotting med on Monday afternoon and by Tuesday morning the tummy pain and nausea had started. So they are going to discontinue that med and see if that helps. Her blood count is down around the 23 mark and she is flirting with a blood transfusion. It's amazing when she is not feeling well, how much the monitor goes off. It 'beeps' warning as her pulse and breathing raises from the high fever. So as I am typing this, I keep turning around to see why the monitor is going off. Stacy is calmly sitting over there with her legs folded reading 'A Gable Faces East' trying not to fall asleep. I'm so glad (lucky) I married that woman.
So basically they are going to: 1- Pull the picc line, 2- start a new 'regular' IV, 3- discontinue the 3rd blood clotting med, 4-hold off on all blood draws for 48 hours, and 5-start the feeding. Hopefully this will help with the fever, nausea, and low blood count. Other than that, she is doing just hunky dory! Hunter and Gage is driving her nuts, and nothing is funny to her right now. She should be back to 'Jabber Jaws' when she is felling better.
Sierra is getting the 'Baptism by Fire' at Jordan Middle School. Her homework has hit. We are still trying to find the best routine for her and Megan to do their homework. They both really want to be here with Lindsey, but there is just too much chaos. One of us will need to go home with them to the RMH so they can focus. They are still trying to find their place in a big school and new environment. Lunch has been a pretty lonely time, but they are figuring it out. They both really miss PV and their friends. Today I rode halfway with them on the bikes to Hansen's, they just wanted help getting to and across El Camino. I figured so, it was time.
Been a bit discouraged today. I know we are blessed, that God does and has heard and answered our (and your) prayers. Lindsey is doing so much better than before. All I have to do is look at posts from late June early July to see that. But.... I try so hard to help Lindsey on walks, going potty, and coping with her situation. I keep wondering how long this will go on? How many more weeks / months? How long before the donor and the donor's family is prepared. Lindsey is strong, but she needs her Mom and Dad here to keep her strong. (more beeping) Last night Stacy and I both went home to get the boys to bed and help Sierra and Megan with homework. By the time I got back to Lindsey, she was all worked up in tears and feeling lousy. I'm still sleeping here with Lindsey, and probably will for awhile. Even when she feels good, she sleeps better knowing someone is here. Who knows when Stacy and I will actually sleep together. I'm also gaining weight and that is tickin' me off!
So there you have it. Sometimes I just need to vent. I know it will all work out, that God is in control and we will be stronger for it. I know that and truly believe it. We have wonderful people back home and here in Palo Alto supporting us. But sometimes this just sticks!
Enough pitty party. I feel better now. They are here to start the IV, and I need to go pick up the girls from Hansen's place and get them home to start homework.
Forgot to add some pictures from the 22nd, The day they FINALLY let her go outside for a breath of fresh air. It was fun walk to take to the Stanford side. The last time she had been out was on June 17th.
Wednesday, August 22, 2012
Aug 22, The Circus for the boys, and not feeling good...again for Linds
10:50 am.
It started last night. The routine is kids do homework here, we eat dinner in the Sabrato room down the hall around 5:30, we take Lindsey for a walk, read scriptures, say prayers, then we all head home. I help get kids to bed or do more homework then come back to sleep here with Lindsey around 9:00. Lindsey went to sleep around 9:30. She gets checked and vitals from the nurse every 2 hours. Last night each time they did a check at 12, 2, and 4. She was very agitated and nauseous. They had increased her tube feeds so she could be unhooked longer during the day. They are wondering if that isn't what was bugging her. She hasn't spiked a fever (yet), but she is definitely acting like one is coming. She is not her perky self and did NOT want to go to school. She even has her favorite nurse today, and that still hasn't perked her up. Amazing how fast she can go from the 'Lindsey' that we all know to a Lindsey who is struggling, hurting, and emotional. Today my prayer is she will feel better and return to herself, no fever, and that the doctors will know how to help. Right now she is at school, no fevers, feels nauseous, no vomiting (yet), and not very happy. See how today goes.
This morning when she was getting ready for school we had Dr's Yeh, Meada, and Reinhartz all came into her room. That is a first. Those are the Doctors that get the word, make the decision on a possible donor heart, and perform the surgery. For a few seconds we thought this might be the moment. But they were just stopping by to check in and say hi.
Yesterday, during physical therapy, she was feeling good. They are working with her in many different areas. They did some yoga moves (Cat Stretch and Child's Pose) to help with her hunched over shoulders and tight stomach muscles. Skye Flanagan would have been proud.
Kids get out of school at 1:30 every Wednesday. That's good because Sierra has a ton of homework, she was up pretty late last night finishing up.
On Saturday, the boys and I went to the circus in San Jose with Kade, Wyatt and Stephanie Thomas. Their baby is doing so much better. They are sure good friends. Here are few pictures (for our diary).
It started last night. The routine is kids do homework here, we eat dinner in the Sabrato room down the hall around 5:30, we take Lindsey for a walk, read scriptures, say prayers, then we all head home. I help get kids to bed or do more homework then come back to sleep here with Lindsey around 9:00. Lindsey went to sleep around 9:30. She gets checked and vitals from the nurse every 2 hours. Last night each time they did a check at 12, 2, and 4. She was very agitated and nauseous. They had increased her tube feeds so she could be unhooked longer during the day. They are wondering if that isn't what was bugging her. She hasn't spiked a fever (yet), but she is definitely acting like one is coming. She is not her perky self and did NOT want to go to school. She even has her favorite nurse today, and that still hasn't perked her up. Amazing how fast she can go from the 'Lindsey' that we all know to a Lindsey who is struggling, hurting, and emotional. Today my prayer is she will feel better and return to herself, no fever, and that the doctors will know how to help. Right now she is at school, no fevers, feels nauseous, no vomiting (yet), and not very happy. See how today goes.
This morning when she was getting ready for school we had Dr's Yeh, Meada, and Reinhartz all came into her room. That is a first. Those are the Doctors that get the word, make the decision on a possible donor heart, and perform the surgery. For a few seconds we thought this might be the moment. But they were just stopping by to check in and say hi.
Yesterday, during physical therapy, she was feeling good. They are working with her in many different areas. They did some yoga moves (Cat Stretch and Child's Pose) to help with her hunched over shoulders and tight stomach muscles. Skye Flanagan would have been proud.
On Saturday, the boys and I went to the circus in San Jose with Kade, Wyatt and Stephanie Thomas. Their baby is doing so much better. They are sure good friends. Here are few pictures (for our diary).
Notice the guy in the back 'showing' us off the main floor.
Gage and Hunter with their dragon swords.
Tuesday, August 21, 2012
Aug 21, Volleyball signups
10:30 am.
Lindsey is still doing great. She went to both sessions of school yesterday and is at school right now. She likes to 'push' her own meds and 'pull' her own blood draws out of her picc line. Kinda funny to watch.
Stacy picked the girls up from school. Megan says she has a new friend and is working on 2 more. I think she is going to survive. Sierra likes it and has a lot of homework. Hunter's school is way too short. That kid has a LOT of energy that needs to be burned off. The RMH and LPCH Room 3241 does not have enough space for that kid. Him and Gage just need to run and wrestle, like a couple of border collie puppies.
This morning after dropping the girls off, I stood in a long line to sign Megan up for volleyball. She wants to go out for the team, so what the heck, might as well. Here you just sign up and it is on a first come first serve basis. I was there in line 35 minutes early and the teams were already filled up. So she was still put on a waiting list along with a whole bunch of other kids. It's definitely NOT PVHS here now is it. I was sitting in line talking to some other parents. They were grumbling about the process and having to wait and still not getting their child on the team. I didn't know enough about the process to grumble. One of the parents asked about my children and I told her quite a story. That really shut them up. Again this puts so many things into perspective.
Gage has his 2 week checkup for his pacemaker optimization, echo, and heart meds. Could take a couple of hours. He is sure acting well.
So hopefully over the next few days we are going to figure out a routine. How to make school, rounding doctors, work, Lindsey's walks and therapy, play time for the boys, homework, volleyball, band instruments (so where are they going to practice?), and family time. I know it sounds like a lot, but Stacy and I both feel it is doable. As long as Lindsey feels good, we can do this. If she turns, or get a heart (oh yeah forgot about that) then everything changes.
Lindsey is still doing great. She went to both sessions of school yesterday and is at school right now. She likes to 'push' her own meds and 'pull' her own blood draws out of her picc line. Kinda funny to watch.
Stacy picked the girls up from school. Megan says she has a new friend and is working on 2 more. I think she is going to survive. Sierra likes it and has a lot of homework. Hunter's school is way too short. That kid has a LOT of energy that needs to be burned off. The RMH and LPCH Room 3241 does not have enough space for that kid. Him and Gage just need to run and wrestle, like a couple of border collie puppies.
This morning after dropping the girls off, I stood in a long line to sign Megan up for volleyball. She wants to go out for the team, so what the heck, might as well. Here you just sign up and it is on a first come first serve basis. I was there in line 35 minutes early and the teams were already filled up. So she was still put on a waiting list along with a whole bunch of other kids. It's definitely NOT PVHS here now is it. I was sitting in line talking to some other parents. They were grumbling about the process and having to wait and still not getting their child on the team. I didn't know enough about the process to grumble. One of the parents asked about my children and I told her quite a story. That really shut them up. Again this puts so many things into perspective.
Gage has his 2 week checkup for his pacemaker optimization, echo, and heart meds. Could take a couple of hours. He is sure acting well.
So hopefully over the next few days we are going to figure out a routine. How to make school, rounding doctors, work, Lindsey's walks and therapy, play time for the boys, homework, volleyball, band instruments (so where are they going to practice?), and family time. I know it sounds like a lot, but Stacy and I both feel it is doable. As long as Lindsey feels good, we can do this. If she turns, or get a heart (oh yeah forgot about that) then everything changes.
Hunter before school
Lindsey on her way to school. Stacy wanted to push the Berlin to get some exercise and Lindsey wanted to push her IV pole. This nurse, Kimberly, is one of Lindsey's favorites.
Monday, August 20, 2012
Aug 20, Monday, Off to school
11:20 am.
Today was the first full day of school and the first day the kids rode bikes. So Sierra, Megan and I (Daddy) rode out bikes to Jordan Middle School this morning. We picked up Georgia, Michelle Hansen's daughter, along the way. It was quite an experience. A sea of bikes everywhere. All the bikes actually looked like a good ole cattle drive down the Anthony Lake Highway. Here and there you would pass little kids peddling then big kids would come flying by. It really did look like a cattle drive. However, it will NOT take long before it will be really uncool for Dad to tag along. They were grateful today because I carried their heavy backpacks in the Gage buggy cart, but once they get their lockers and understand the route, I will be officially uninvited. And I'm good with that.
Hunter caught the bus around 7:25 and was excited to go. Lindsey had her princess jacket on and was off the hospital school. They have made some changes on how they do the dressing changes and that seems to help with the itching. She hasn't had the insane itching for about 2 days.
Stacy off to do some shopping and I am getting some work done.
Sandy Cumming, wrote a good blog article on the insidedateline
http://insidedateline.nbcnews.com/_news/2012/08/20/13367001-waiting-for-a-new-heart-lindsey-lou-stole-ours
Good friend Denette, found a CNN story about organ donation. This is what it is all about
http://www.cnn.com/video/?/video/us/2012/08/18/pkg-transplant-mom-hears-sons-heartbeat-again
Thanks to Luiz Alberto Balderas. We received a nice letter and support from their family. Very kind of you.
Today was the first full day of school and the first day the kids rode bikes. So Sierra, Megan and I (Daddy) rode out bikes to Jordan Middle School this morning. We picked up Georgia, Michelle Hansen's daughter, along the way. It was quite an experience. A sea of bikes everywhere. All the bikes actually looked like a good ole cattle drive down the Anthony Lake Highway. Here and there you would pass little kids peddling then big kids would come flying by. It really did look like a cattle drive. However, it will NOT take long before it will be really uncool for Dad to tag along. They were grateful today because I carried their heavy backpacks in the Gage buggy cart, but once they get their lockers and understand the route, I will be officially uninvited. And I'm good with that.
Waiting at a stop light. See how the bikes stretch off into the distance.
(These are the high schoolers, after I dropped Sierra and Meg off)
Stacy off to do some shopping and I am getting some work done.
Sandy Cumming, wrote a good blog article on the insidedateline
http://insidedateline.nbcnews.com/_news/2012/08/20/13367001-waiting-for-a-new-heart-lindsey-lou-stole-ours
Good friend Denette, found a CNN story about organ donation. This is what it is all about
http://www.cnn.com/video/?/video/us/2012/08/18/pkg-transplant-mom-hears-sons-heartbeat-again
Thanks to Luiz Alberto Balderas. We received a nice letter and support from their family. Very kind of you.
Sunday, August 19, 2012
Aug 19, 1000 Cranes
10:10 pm
Quick report. Great day here at LPCH. She was quite the 'Jabber Jaws' (another nickname she had inherited). Talked and giggled and was active most of the day. Took 2 long walks today. The afternoon walk was off of the 3rd floor, to the Stanford side, and then way down the hall to the Stanford cafeteria for ice cream. It was a good long walk. Of course she had maybe 3 bites of her strawberry popsicle, but hey it was good walk.
Tiffany flew home today. It was sure nice of her to be here. The kids just loved it. Liz Niccum came by with 3 girls. They made Lindsey '1,000 Cranes'. They folded 1,000 paper cranes by hand (no joke) and made a heart shaped design. Very creative and thoughtful. According to ancient Chinese tradition (I think?) the 1,000 cranes is suppose to bring good luck. It was very nice although we all decided we will stick with prayer and the wisdom of the doctors rather than 'luck'.
Renee Miller came by yesterday. Her daughter was here for tests. They stayed with Bob Paugh of course. Hope tests go well for them.
Tomorrow is the first real days of school. Sierra, Megan and I will leave around 7:20 on our bikes. Time to buck up and get with it.
Again, thanks to all for the wonderful support. We feel and pull from your strength.
Quick report. Great day here at LPCH. She was quite the 'Jabber Jaws' (another nickname she had inherited). Talked and giggled and was active most of the day. Took 2 long walks today. The afternoon walk was off of the 3rd floor, to the Stanford side, and then way down the hall to the Stanford cafeteria for ice cream. It was a good long walk. Of course she had maybe 3 bites of her strawberry popsicle, but hey it was good walk.
Tiffany flew home today. It was sure nice of her to be here. The kids just loved it. Liz Niccum came by with 3 girls. They made Lindsey '1,000 Cranes'. They folded 1,000 paper cranes by hand (no joke) and made a heart shaped design. Very creative and thoughtful. According to ancient Chinese tradition (I think?) the 1,000 cranes is suppose to bring good luck. It was very nice although we all decided we will stick with prayer and the wisdom of the doctors rather than 'luck'.
Renee Miller came by yesterday. Her daughter was here for tests. They stayed with Bob Paugh of course. Hope tests go well for them.
Tomorrow is the first real days of school. Sierra, Megan and I will leave around 7:20 on our bikes. Time to buck up and get with it.
Again, thanks to all for the wonderful support. We feel and pull from your strength.
Heading in. Notice her posture. We are working to get her to stand straight. She seems to hunch over quite a bit.
Trying to find something or anything she might eat. (This was NOT staged!)
This is the 1,000 Cranes. Liz did a great job. I can see the Priests in the Baker Valley Ward doing this headed up by Henry Shaw, Quin Stephens (dadgumit), Logan and Chad.
Saturday, August 18, 2012
Aug 18, The Auction
10:30 pm.
Justin Bingham and Becca Davis, my cousin, kept us informed of the amazing auction. It was quite an emotional night for Stacy and I as we heard of the support of so many of our friends. Tonight Tiffany stayed with the kids as Stacy and I went to downtown Palo Alto for dinner. We ate a cute little crepe place and texted Becca and Justin. It felt like we were in Italy, narrow streets, foreign cars (except our big suburban) Greek food, and no one around us spoke English. Kinda funny.
Had fun with Gage and Hunter at the circus. They got a huge kick out of the lions, elephants and trapeze.
Lindsey did great. They did a 2nd x-ray on her right side looking at the fluid. It looked better than last night. Had two more really good walks. Her energy, temp, heart rate, and itching are all better than yesterday.
Tiffany leaves tomorrow. Sure nice having her here.
Sure love and miss our Baker Valley tonight!
Pictures from Justin Bingham and Becca Davis
Here are some cool pictures of her last dressing change. Stacy holding the IPad and the nurse cleans around the Berlin site.
Justin Bingham and Becca Davis, my cousin, kept us informed of the amazing auction. It was quite an emotional night for Stacy and I as we heard of the support of so many of our friends. Tonight Tiffany stayed with the kids as Stacy and I went to downtown Palo Alto for dinner. We ate a cute little crepe place and texted Becca and Justin. It felt like we were in Italy, narrow streets, foreign cars (except our big suburban) Greek food, and no one around us spoke English. Kinda funny.
Had fun with Gage and Hunter at the circus. They got a huge kick out of the lions, elephants and trapeze.
Lindsey did great. They did a 2nd x-ray on her right side looking at the fluid. It looked better than last night. Had two more really good walks. Her energy, temp, heart rate, and itching are all better than yesterday.
Tiffany leaves tomorrow. Sure nice having her here.
Sure love and miss our Baker Valley tonight!
Pictures from Justin Bingham and Becca Davis
Silent Auction
Taco Feed
Good friends
Here are some cool pictures of her last dressing change. Stacy holding the IPad and the nurse cleans around the Berlin site.
Aug 18, Saturday, Auction Day
2:00 pm
Lindsey is doing great. Just went on a 5.5 lap walk, longest walk in about a week. She went kickin' and screamin' but she went. We argued about going on the 5th lap the entire 5th lap. She still has fluid on / around her right lung. They are going to increase her lasix and try to pee more of that off. Berstein said the best thing she can do is go on walks (ambulate), and do her shoulder and breathing exercises. Thus Dad's push to get her on a longer walk. She slept well last night. They tried a new 'itchy' medicine along with ice. That seemed to cool the itching down and she slept for 8-9 hours.
Sierra is back to normal. Her and Megan had an ok day at school. Both feel lost around campus and only knows a few people. Megan was really worked up and feeling pretty sad. Its hard to be in such a big school and not know anyone in her class. Everyone else seems to have friends and she wants to join in. Good grief, it's only the 2nd day, in about a week she will be on top of her game.
Today is the day of the Bingham auction back home. The support is unbelievable. Wish we could be there. We live in the absolute best community ever. Anywhere from a child doing a bake sale on the corner, doing a pie social in the park, steers sold at the Haines rodeo and lamb auctions in Utah. There are so many things that we don't even know about going on in our behalf. We can't thank people enough, we are overwhelmed at the outpouring of prayers, love and support for us. We would love to be home right now, to thank everyone personally, but we just can't right now. Our little girl still needs us.
Jason and the boys are off to the circus. They ALL needed an outing. The girls, Aunt Tiffany and I are in her room doing hair and playing Nertz. Hopefully Jason makes it back home and decides not to join the circus.
Lindsey is doing great. Just went on a 5.5 lap walk, longest walk in about a week. She went kickin' and screamin' but she went. We argued about going on the 5th lap the entire 5th lap. She still has fluid on / around her right lung. They are going to increase her lasix and try to pee more of that off. Berstein said the best thing she can do is go on walks (ambulate), and do her shoulder and breathing exercises. Thus Dad's push to get her on a longer walk. She slept well last night. They tried a new 'itchy' medicine along with ice. That seemed to cool the itching down and she slept for 8-9 hours.
Sierra is back to normal. Her and Megan had an ok day at school. Both feel lost around campus and only knows a few people. Megan was really worked up and feeling pretty sad. Its hard to be in such a big school and not know anyone in her class. Everyone else seems to have friends and she wants to join in. Good grief, it's only the 2nd day, in about a week she will be on top of her game.
Today is the day of the Bingham auction back home. The support is unbelievable. Wish we could be there. We live in the absolute best community ever. Anywhere from a child doing a bake sale on the corner, doing a pie social in the park, steers sold at the Haines rodeo and lamb auctions in Utah. There are so many things that we don't even know about going on in our behalf. We can't thank people enough, we are overwhelmed at the outpouring of prayers, love and support for us. We would love to be home right now, to thank everyone personally, but we just can't right now. Our little girl still needs us.
Jason and the boys are off to the circus. They ALL needed an outing. The girls, Aunt Tiffany and I are in her room doing hair and playing Nertz. Hopefully Jason makes it back home and decides not to join the circus.
Friday, August 17, 2012
Aug 17, Much better
1:40 pm.
Quick report to ease my parent's minds. Lindsey's fever is gone. She slept well, took a 3.5 lap walk, has been to school, and is at PT right now. The fluid on her right side seems to have been the problem. Because of the fluid a part of her right lung has collapsed. They will still probably take the picc line out just because it has been in for so long and risk of infection. She still has pain and itching around the Berlin site.
Sierra is also feeling better. Went to school and will pick her and Megan up at 3:00 today. Will give a full report later with pictures.
Jas
Quick report to ease my parent's minds. Lindsey's fever is gone. She slept well, took a 3.5 lap walk, has been to school, and is at PT right now. The fluid on her right side seems to have been the problem. Because of the fluid a part of her right lung has collapsed. They will still probably take the picc line out just because it has been in for so long and risk of infection. She still has pain and itching around the Berlin site.
Sierra is also feeling better. Went to school and will pick her and Megan up at 3:00 today. Will give a full report later with pictures.
Jas
Thursday, August 16, 2012
Aug 16, Lindsey up, Sierra down
8:30 pm.
Jason here. The lasix seemed to work. With that IV lasix she has been peeing all day long. By getting that extra fluid off her temperature is back under 100 and her pulse is under 120. Shoulder still hurts a little, see how the night goes. We are going to try a walk tonight, first one since yesterday morning. So she is feeling better than she did this morning. I'm staying with her again tonight, hopefully she will sleep well.
Stacy stayed here and I went to San Jose Airport and picked up Tiffany, Stacy's sister. She is staying here until Sunday. Hopefully Stacy and I can get on a date ;) On our way back Stacy called and said we need to go pick Sierra up from school, she got a headache and threw up. Ain't that just jim flippin dandy. By the time I drove there, school was about out and we watched the wave of kids head for their bikes. Megan was very excited to tell us about her day, and Sierra felt like crap! Just not fair is it.
Sierra doesn't have a high temp, her blood pressure is a bit high 118 over 82, she threw up again at the RMH, and her head hurt quite a bit. We told the doctor on call and we are watching her tonight. Hopefully she will feel better tomorrow. I guess that's the reality of all this. It never ends. Sierra wanted so bad for us not to worry about her, but she was in a lot pain and feels cruddy.
At this moment, Lindsey is trying to sleep, but the itchy is driving her crazy. Could be a long night.
So that's it. Hopefully we are back to 'boring' tomorrow, with a little school excitement.
That will be fun to skype Lindsey's class when she is feeling better. As brave as Lindsey and Sierra are, they still need Mom and Dad here to boost them up.
Still overwhelmed by the support for the auction coming up. Amazed by the support we are receiving.
Jason here. The lasix seemed to work. With that IV lasix she has been peeing all day long. By getting that extra fluid off her temperature is back under 100 and her pulse is under 120. Shoulder still hurts a little, see how the night goes. We are going to try a walk tonight, first one since yesterday morning. So she is feeling better than she did this morning. I'm staying with her again tonight, hopefully she will sleep well.
Stacy stayed here and I went to San Jose Airport and picked up Tiffany, Stacy's sister. She is staying here until Sunday. Hopefully Stacy and I can get on a date ;) On our way back Stacy called and said we need to go pick Sierra up from school, she got a headache and threw up. Ain't that just jim flippin dandy. By the time I drove there, school was about out and we watched the wave of kids head for their bikes. Megan was very excited to tell us about her day, and Sierra felt like crap! Just not fair is it.
Sierra doesn't have a high temp, her blood pressure is a bit high 118 over 82, she threw up again at the RMH, and her head hurt quite a bit. We told the doctor on call and we are watching her tonight. Hopefully she will feel better tomorrow. I guess that's the reality of all this. It never ends. Sierra wanted so bad for us not to worry about her, but she was in a lot pain and feels cruddy.
At this moment, Lindsey is trying to sleep, but the itchy is driving her crazy. Could be a long night.
So that's it. Hopefully we are back to 'boring' tomorrow, with a little school excitement.
That will be fun to skype Lindsey's class when she is feeling better. As brave as Lindsey and Sierra are, they still need Mom and Dad here to boost them up.
Still overwhelmed by the support for the auction coming up. Amazed by the support we are receiving.
Aug 16, Fever spiking,
9:00 Me again. Long night. Fever has been spiking and staying at around 102. Shoulder still hurting quite a bit. We didn't sleep much last night, and she threw up this morning. Other than that, we are doing just great.
They haven't found any major infection yet, but her white blood cell count is slightly elevated. Waiting for rounds and see what they want to do.
10:00 Rounds just finished. They are going to do a bunch of tests, x-ray, blood work, ultrasound, and a bunch of other stuff I don't understand. We did have all the major doctors here, Berstein, Ashwin, Katz, nurses, and 5-6 other people. They are all clearly concerned and want to figure this out. It is this kind of stuff that will suspend her from the transplant list. We will keep you informed.
10:45 X-ray done. Shows some fluid on her right side. They are going to give her some IV Lasix to pull the fluid off (make her pee a whole bunch). Other than that test, watch and treat. This is what we trust them for. This is what we pray for.
On a lighter note. Sierra, Megan and Hunter are off to school. Stacy said there was a sea of bicycles going down Newell avenue towards Jordan Middle School. 100's of bikes everywhere. Oh the stories our daughters and son will tell.
They haven't found any major infection yet, but her white blood cell count is slightly elevated. Waiting for rounds and see what they want to do.
10:00 Rounds just finished. They are going to do a bunch of tests, x-ray, blood work, ultrasound, and a bunch of other stuff I don't understand. We did have all the major doctors here, Berstein, Ashwin, Katz, nurses, and 5-6 other people. They are all clearly concerned and want to figure this out. It is this kind of stuff that will suspend her from the transplant list. We will keep you informed.
10:45 X-ray done. Shows some fluid on her right side. They are going to give her some IV Lasix to pull the fluid off (make her pee a whole bunch). Other than that test, watch and treat. This is what we trust them for. This is what we pray for.
On a lighter note. Sierra, Megan and Hunter are off to school. Stacy said there was a sea of bicycles going down Newell avenue towards Jordan Middle School. 100's of bikes everywhere. Oh the stories our daughters and son will tell.
These last 2 pictures are for the Doctors. They want to see a comparison between dressing changes to look for infection. These 2 pictures are 4 days apart. Berstein thinks there may be some more inflammation on the left side.
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