Stacy here.
Another wonderful busy day. Helped the kids off to school, then to the hospital to get Lindsey ready. Jason stayed at the hospital with Gage, so that I could help at Hunter's school. I sure enjoy doing that. It puts a face to the kids Hunter comes home and talks about. Then, I switched with Jason, he went to his office and Gage and I waited for Lindsey to have lunch with her. Today, cute little Annalyse and her parents came to eat with us. It was nice to visit with them. Annalyse received her transplant 2 months ago. They are about a month away from being able to go home. Lindsey's INR was 2.0, which means she has to continue the Lovinox shots twice a day. They want the level between 2.5 and 3.5. She wasn't very happy, but we don't want any clots. She takes the shots like a brave champ.
Lindsey went back to school and Gage and I went down to visit with our good friends Trista and Shawn Stockwell, who are here for IVIG and biopsy. I was having a wonderful visit and had been there maybe 10 minutes (or so it seemed). Gage had snuggled up and fallen asleep on my lap, everything was nice. Then, I looked at my watch and realized it was 2:50. That is the time Hunter is let off the bus at the Ronald McDonald House. I stood up so fast, poor Gage fell and ended in a heap on the floor. Needless to say, I was a little late getting Hunter and even later getting an enraged preteen to her volleyball practice. She hates being late to her practices. Ooopps! It all ended well. At the end of the day all heads were accounted for.
This afternoon, Dr. Katz Meata, the surgeon who will perform Lindsey's transplant, came by just for a visit. It was very nice of him. He said he doesn't get a single call that someone asks, "Is that for Lindsey." There are many people in the hospital rooting for her. Lindsey was a little worried about what would happen if he was gone. Would she have to wait longer until another offer came along? He explained that he doesn't go on vacation hardly ever and if he is gone the other surgeon, Olaf is here and able to do it just fine. I told him that he would be taking a vacation later on to come visit us in Oregon, and let his sweet family ride some horses in the country. He lit up and agreed. He told Lindsey after her transplant that they would like to have her over to play with his daughters. We will look forward to that!
This evening we came back to the RMH a little early to get Gage's picture taken. The whole family got involved. Before you knew it, we were all putting on funny hats or dressing up. It is an amazing service the family provides. They come every other Thursday and set up shop for 6 hours. They take all kinds of pictures for the people living at the house. They were a lot of fun. However, we were still missing Lindsey, as she sat back at the hospital by herself. It just didn't feel complete. We will look forward to doing it again when ALL our family is here. It is sure good to be busy. Time is starting to move again. We will post those pictures on tomorrow's blog.
Look forward to a visit from my best friend Wendy and her family on Monday.
Thursday, January 10, 2013
Wednesday, January 9, 2013
Jan 9, Megan's lost key and Eating Crow
Rainy 'wintery' day here in Palo Alto. Kids off to school as usual. Lindsey's blood level is still low, so another lovinox shot tonight at 12. The nurse tonight will try to give her the shot while she is asleep. I know I would come up swinging if someone poked me in the middle of a deep sleep.
Congrats to Mike and Heidi for breaking the code. Tracy, the English nurse, will be in soon and will get a huge kick out of it.
After school today Megan lost the key to her bike. She ran all over the place looking for it. Went to class room and the gym, thought the door was locked, asked someone to let her in. The teacher told her to just open the door. (she was embarrassed). Kept looking for it. Never found it. Then there it was.... hanging around her neck. I guess she did get part of her Dad's brains.
I just now went to take out the tray and get some blankets and I happen to run into the lady we offended in the Sobrato room the other day. Regardless of who's at fault, we all have WAY more things to worry and stress about than offending someone or being offended. That takes up so much energy and focus. So we both apologized, I was sorry for letting the boys run wild (which they did), and she was sorry for yelling at us in the family room (and she did). We then had a great visit. She has a small baby with RSV complications along with boys who also like to run wild. We are all good now, and can move on. I don't have the reserves or the energy for 'stuff' like that. So I have been looking for her and wanted to get the 'feelings' over with and move on to our own kids. Sometimes you just eat the 'crow' and be done with it, right Jim?
Theresa and Calvin Rasmussen and their boys are coming over from Las Vegas the weekend of January 19. That is very nice of them and we are excited to see the crew.
Congrats to Mike and Heidi for breaking the code. Tracy, the English nurse, will be in soon and will get a huge kick out of it.
After school today Megan lost the key to her bike. She ran all over the place looking for it. Went to class room and the gym, thought the door was locked, asked someone to let her in. The teacher told her to just open the door. (she was embarrassed). Kept looking for it. Never found it. Then there it was.... hanging around her neck. I guess she did get part of her Dad's brains.
I just now went to take out the tray and get some blankets and I happen to run into the lady we offended in the Sobrato room the other day. Regardless of who's at fault, we all have WAY more things to worry and stress about than offending someone or being offended. That takes up so much energy and focus. So we both apologized, I was sorry for letting the boys run wild (which they did), and she was sorry for yelling at us in the family room (and she did). We then had a great visit. She has a small baby with RSV complications along with boys who also like to run wild. We are all good now, and can move on. I don't have the reserves or the energy for 'stuff' like that. So I have been looking for her and wanted to get the 'feelings' over with and move on to our own kids. Sometimes you just eat the 'crow' and be done with it, right Jim?
Theresa and Calvin Rasmussen and their boys are coming over from Las Vegas the weekend of January 19. That is very nice of them and we are excited to see the crew.
Tuesday, January 8, 2013
Jan 8, Day 203, Tuesday
Lindsey and I have sat here trying to come up with something witty, clever, or motivating and it just ain't happening. I left this morning for work, Stacy has managed the herd, Sierra has a ton of home work, Megan had no homework but went to volleyball and basketball practice, boys did their usual thing, and for Lindsey...another day.
I asked her what she wanted me to type. She misses everybody back home and wants to get her heart. Pretty simple.
Josh to answer your question, the left cannula healed properly with a good 'seal' around the cannula tube, which keeps the infection and inflammation out. The right side looks so gross, yucky and blaw because somehow the 'seal' around the tubing was loosed enough to allow some infection inside. Once that infection is inside, the body works to get that thing out, kinda like a sliver we get in our hand when we are out chopping firewood. You can see the puss and drainage around the tubing. The dressing changes are done to counter the body trying to fight the cannula. If the infection or inflammation back off enough for the body to get a good 'seal' then it would look like the left side. But it won't. At least that is how Stacy and I understand the differences. To date they have never had to take out, clean and replace a cannula. That would be a very BIG deal, and we don't need to be the first. But if it gets worse (a lot worse) with redness all over the skin not just immediately around it, then they would have to take some sort of action with high powered antibiotics or surgery. She is currently on an antibiotic to fight the infection and hopefully that is enough.
She received a cute package today from the Orr twins, Sarah and Emma . Thank-you. She could tell that a lot of work and thought went into it. It was very nice.
Still waiting for someone to crack the British word story.
We are all missing the snow back home. Hope you are enjoying it.
Shaambak was moved up here to 3 West today. They are all very excited. Remember, they have been here and in the CVICU since way back in June.
Here is to some really ugly chin hair......
I asked her what she wanted me to type. She misses everybody back home and wants to get her heart. Pretty simple.
Josh to answer your question, the left cannula healed properly with a good 'seal' around the cannula tube, which keeps the infection and inflammation out. The right side looks so gross, yucky and blaw because somehow the 'seal' around the tubing was loosed enough to allow some infection inside. Once that infection is inside, the body works to get that thing out, kinda like a sliver we get in our hand when we are out chopping firewood. You can see the puss and drainage around the tubing. The dressing changes are done to counter the body trying to fight the cannula. If the infection or inflammation back off enough for the body to get a good 'seal' then it would look like the left side. But it won't. At least that is how Stacy and I understand the differences. To date they have never had to take out, clean and replace a cannula. That would be a very BIG deal, and we don't need to be the first. But if it gets worse (a lot worse) with redness all over the skin not just immediately around it, then they would have to take some sort of action with high powered antibiotics or surgery. She is currently on an antibiotic to fight the infection and hopefully that is enough.
She received a cute package today from the Orr twins, Sarah and Emma . Thank-you. She could tell that a lot of work and thought went into it. It was very nice.
Still waiting for someone to crack the British word story.
We are all missing the snow back home. Hope you are enjoying it.
Shaambak was moved up here to 3 West today. They are all very excited. Remember, they have been here and in the CVICU since way back in June.
Here is to some really ugly chin hair......
Monday, January 7, 2013
Jan 7, Monday, Sitting around the table
Very proud of Lindsey last night. A few nights ago we watched The Notebook on TV. Of course everyone was crying. (I don't know why women like to watch those kind of shows). Later on Linds insisted that Dad go home and sleep with Mom. She would be Okay, she would call Riza, her night nurse, if she needed anything. Of course I didn't fight her much on that one, I gathered my stuff, kissed her on the forehead, and I was out of there! It was wonderful until 4:40 am when someone's alarm clock went off. Someone (the love of my life) said I had to get up to go exercise with her. I guess nothing is free.
Linds woke up at 2 am and 4:45 am. She was still awake at 6 when I got here, but she never did call us. I know it doesn't sound like much, but it was big deal to her. If you think you have a rough Monday, she then had a 6:30 blood draw, 2 dressing changes, and a lovinox shot. After the blood draw they found her blood thinning level was too low, so they need to start the lovinox shots in the arm for a few days until they get the level back up. At midnight tonight she will get her 2nd shot. It has been a long time since she has needed shots, but she will be fine (easy for me to say, isn't it). Also when they did the dressing change a scab came off, and she bleed all over. They had to repeat the dressing change to clean up the mess. By now she had made up her mind she was NOT going to have a good day!
So tonight we all ate together in the Sobrato Room. It was really nice to sit around and let the kids talk about their first day back to school. Still mixed emotion about returning. Unfortunately, no snow day here. Fun to hear about the snow back in Oregon. So we went around the room asking each kid about there day. Gage gave us a long monolog about his little hospital pre-school. It was so cute, but only mom could understand what he was saying because she was there. Whatever it was, he was excited to tell us. When we go to Sierra, I could tell she was holding back something. You could see her kinda skirting around the issue. My anxiety was rising and I forced it out of her. Nancy from the Heart Center came by and told Stacy and Sierra that they had taken a 2nd look at her biopsy results. She actually has a 1B rejection (4 being the worst) grrrrrr. So they are upping her predisone (steriod) and rechecking in a month. We were hoping / planning on 3-4 months. The fun never stops does it.
Stacy had read a really good article about regrets and resolutions. It talked about how people think they will be 'happy' when this happens or if that happens, or when we have this or go there. Happiness is something we decide on. It was an article that talked directly to our family. We are having the experience of a life time (I hope). It really was nice to sit around that little kid table in the Sobrato Room, eating off paper plates, and listening to the kids talk about their day. That article was the push and motivation Stacy and I needed to keep going.
Work is good. Starting to get the hang of this remote office work style. Still waiting for someone to break the English code.
Shaambak continues to improve and Dina is looking way better.
Lovinox shot in 50 minutes. Good night.
Linds woke up at 2 am and 4:45 am. She was still awake at 6 when I got here, but she never did call us. I know it doesn't sound like much, but it was big deal to her. If you think you have a rough Monday, she then had a 6:30 blood draw, 2 dressing changes, and a lovinox shot. After the blood draw they found her blood thinning level was too low, so they need to start the lovinox shots in the arm for a few days until they get the level back up. At midnight tonight she will get her 2nd shot. It has been a long time since she has needed shots, but she will be fine (easy for me to say, isn't it). Also when they did the dressing change a scab came off, and she bleed all over. They had to repeat the dressing change to clean up the mess. By now she had made up her mind she was NOT going to have a good day!
So tonight we all ate together in the Sobrato Room. It was really nice to sit around and let the kids talk about their first day back to school. Still mixed emotion about returning. Unfortunately, no snow day here. Fun to hear about the snow back in Oregon. So we went around the room asking each kid about there day. Gage gave us a long monolog about his little hospital pre-school. It was so cute, but only mom could understand what he was saying because she was there. Whatever it was, he was excited to tell us. When we go to Sierra, I could tell she was holding back something. You could see her kinda skirting around the issue. My anxiety was rising and I forced it out of her. Nancy from the Heart Center came by and told Stacy and Sierra that they had taken a 2nd look at her biopsy results. She actually has a 1B rejection (4 being the worst) grrrrrr. So they are upping her predisone (steriod) and rechecking in a month. We were hoping / planning on 3-4 months. The fun never stops does it.
Stacy had read a really good article about regrets and resolutions. It talked about how people think they will be 'happy' when this happens or if that happens, or when we have this or go there. Happiness is something we decide on. It was an article that talked directly to our family. We are having the experience of a life time (I hope). It really was nice to sit around that little kid table in the Sobrato Room, eating off paper plates, and listening to the kids talk about their day. That article was the push and motivation Stacy and I needed to keep going.
Work is good. Starting to get the hang of this remote office work style. Still waiting for someone to break the English code.
Shaambak continues to improve and Dina is looking way better.
Lovinox shot in 50 minutes. Good night.
Notice how many IV's and chest tubes he does NOT have. He is lookin good.
Gage-a-real-eous, during dressing change
The canula site during the 1st dressing change. Look better? Who knows.
Sunday, January 6, 2013
Jan 6, British Words of the Day
Received a text from Diana Murphy this morning. She asked if she could come over and hang out with Lindsey while we all went to church. It was very nice of her to do that. Lindsey and Diana played games, went to the playroom, and did activities most of the afternoon while we were gone. It really was very nice of her. We didn't even call to check in during church (is that bad?)
Today in church, Stacy stood up and shared her thought with the congregation (called Fast and Testimony Meeting). She did an amazing job of thanking the many people both in and out of the church that have helped and blessed our lives. We have been blessed with meals, activities for our kids, visitors to the hospital, play dates with the kids, rides to activities, and other support. She also thanked our Heavenly Father for the blessings in our lives. The blessing of all being together during this time, how well Lindsey and Gage are doing, the technology that is keeping our Princess alive, a place to live and other many blessings. Later on I also stood and shared a few thoughts. Thanked Sadie for making Lindsey's birthday something special, (she did something a parent could never do!) and talked about the need for us all to have 'Faith in His Timing'. It was something Stacy and I both needed. It helped us with the energy, spirit, and motivation needed to keep going.
This afternoon Lawrence and Glenda Cheng came by for a visit. I met this nice family at a Christmas party back in mid-December. They brought their 3 boys over and they wrestled and played in the Sobrato Room until we ticked off the other people that were in there. (oops, it was a bit of a scene)
Tomorrow kids start back to school. They all have mixed feeling about heading back. It will be good to get back into a routine as the wait continues. Lindsey also has a dressing change and blood draw. All good stuff.
Tracy, our fun English nurse from Great Britain, brought by the 'English Food of the Week'. For the past several months she has brought by the 'English Word of the Day'. Unfortunately she has run out of 'kid friendly' words and has run out of room on the paper we have. More evidence that we have been here a while. She has a thick English accent and the kids have fun with her every time she comes by. The food of the day was English baked beans. Tasted pretty much the same as regular baked beans, but with a English twist. The kids ate it up. She is going to try to do something once a week. She is even talking roasted lamb with mint sauce someday. Now there's a reason to stay in the hospital.
So,......I hope to put on my daisy roots, knickers and 'jumper and skive over to the apples and pears down the frog and toad avoiding the bobby, lorry, bonnets and bangers with my brolly, mac and wellies, use the bog and have a chinwag and a sarnie and chip butty with my boffin, nutter, bird. Hopefully not a cheeky barney with her bloke and throw a wobbly over the dodgy manky dosh found in the rubbish. By the way, haven't heard from my skin and blisters on the blower lately.
Lindsey was down in the CVICU today checking on Shaambak and Dina (both doing well) and bumped into Dr Wright. Dr. Wright took care of Linds during those dark days in June and July. Those two love to tell jokes to each other and ended up in a 'Joke off'. So I was scrambling through the blog comments looking for jokes. It was quite fun. I wanted to throw out my 'Rooster Joke' from my college days, but it wasn't the right time. Maybe later.
Today in church, Stacy stood up and shared her thought with the congregation (called Fast and Testimony Meeting). She did an amazing job of thanking the many people both in and out of the church that have helped and blessed our lives. We have been blessed with meals, activities for our kids, visitors to the hospital, play dates with the kids, rides to activities, and other support. She also thanked our Heavenly Father for the blessings in our lives. The blessing of all being together during this time, how well Lindsey and Gage are doing, the technology that is keeping our Princess alive, a place to live and other many blessings. Later on I also stood and shared a few thoughts. Thanked Sadie for making Lindsey's birthday something special, (she did something a parent could never do!) and talked about the need for us all to have 'Faith in His Timing'. It was something Stacy and I both needed. It helped us with the energy, spirit, and motivation needed to keep going.
This afternoon Lawrence and Glenda Cheng came by for a visit. I met this nice family at a Christmas party back in mid-December. They brought their 3 boys over and they wrestled and played in the Sobrato Room until we ticked off the other people that were in there. (oops, it was a bit of a scene)
Tomorrow kids start back to school. They all have mixed feeling about heading back. It will be good to get back into a routine as the wait continues. Lindsey also has a dressing change and blood draw. All good stuff.
Tracy, our fun English nurse from Great Britain, brought by the 'English Food of the Week'. For the past several months she has brought by the 'English Word of the Day'. Unfortunately she has run out of 'kid friendly' words and has run out of room on the paper we have. More evidence that we have been here a while. She has a thick English accent and the kids have fun with her every time she comes by. The food of the day was English baked beans. Tasted pretty much the same as regular baked beans, but with a English twist. The kids ate it up. She is going to try to do something once a week. She is even talking roasted lamb with mint sauce someday. Now there's a reason to stay in the hospital.
So,......I hope to put on my daisy roots, knickers and 'jumper and skive over to the apples and pears down the frog and toad avoiding the bobby, lorry, bonnets and bangers with my brolly, mac and wellies, use the bog and have a chinwag and a sarnie and chip butty with my boffin, nutter, bird. Hopefully not a cheeky barney with her bloke and throw a wobbly over the dodgy manky dosh found in the rubbish. By the way, haven't heard from my skin and blisters on the blower lately.
Lindsey was down in the CVICU today checking on Shaambak and Dina (both doing well) and bumped into Dr Wright. Dr. Wright took care of Linds during those dark days in June and July. Those two love to tell jokes to each other and ended up in a 'Joke off'. So I was scrambling through the blog comments looking for jokes. It was quite fun. I wanted to throw out my 'Rooster Joke' from my college days, but it wasn't the right time. Maybe later.
Tracy's list.
Lindsey and Diana
Kids (and Shannon, the nurse) dinkin' around on one of those 'Make-your-own-music-video' apps.
Saturday, January 5, 2013
Jan 5, Day 200, Club Volleyball
Yes, we have entered the '200' club. Not sure what that earns you or what button she gets for that, but we have now hit 200 days on the transplant list. So to celebrate this great accomplishment, Lindsey and the gang did the usual; walks, playroom, nerts, Wacky 6, make a craft, watch a movie, and go on another walk. Honestly, she had another good day.
Sierra stayed at Nori's house last night and went to basketball practice this morning. But right on schedule were her headaches from the IVIG. Tonight she was in tears with pain. If she ever gets behind with her pain meds it takes a while to get back on top of the pain. Hopefully tonight Stacy will have it under control.
Megan and I left this morning at 7:40 for her first all day club volleyball tournament in San Mateo. They played a total of 5 games and finished around 6:00 this evening. They finished 4th out of 16 teams. Not too bad! She had a great time getting out and playing. She has definitely improved and can hold her own with anyone on the team. Some of the teams we beat pretty easily and other games we were beat pretty easily. Interesting how the teams they beat they had all the confidence in the world and when they were getting whooped on they couldn't remember how to hit the ball. It was a great day and she had fun. Got to know some of the parents. Wow, some of those parents are serious about this club volleyball thing. I guess there are 'power' clubs out there that travel all over the Western United States and compete for the Junior Olympics. Hey whatever!
Had a great visit with Marci and John Stevens. They are such good people. Their daughter, PK, is one of Megan's best friends here in California. They have and continue to help us in so many ways.
When the last game was done and we were all heading out, a few of the parents were saying what a long day it was sitting in the same building all day. Megan and I just smiled. We know someone who has had a few long days sitting in the same building :)=
Lindsey went for her evening walk to the CVICU. Shaambak has had the ventilator taken out! He looks great and is improving everyday. Still bitter / sweet for Lindsey. She knows her turn is coming.....
Sierra stayed at Nori's house last night and went to basketball practice this morning. But right on schedule were her headaches from the IVIG. Tonight she was in tears with pain. If she ever gets behind with her pain meds it takes a while to get back on top of the pain. Hopefully tonight Stacy will have it under control.
Megan and I left this morning at 7:40 for her first all day club volleyball tournament in San Mateo. They played a total of 5 games and finished around 6:00 this evening. They finished 4th out of 16 teams. Not too bad! She had a great time getting out and playing. She has definitely improved and can hold her own with anyone on the team. Some of the teams we beat pretty easily and other games we were beat pretty easily. Interesting how the teams they beat they had all the confidence in the world and when they were getting whooped on they couldn't remember how to hit the ball. It was a great day and she had fun. Got to know some of the parents. Wow, some of those parents are serious about this club volleyball thing. I guess there are 'power' clubs out there that travel all over the Western United States and compete for the Junior Olympics. Hey whatever!
Had a great visit with Marci and John Stevens. They are such good people. Their daughter, PK, is one of Megan's best friends here in California. They have and continue to help us in so many ways.
When the last game was done and we were all heading out, a few of the parents were saying what a long day it was sitting in the same building all day. Megan and I just smiled. We know someone who has had a few long days sitting in the same building :)=
Lindsey went for her evening walk to the CVICU. Shaambak has had the ventilator taken out! He looks great and is improving everyday. Still bitter / sweet for Lindsey. She knows her turn is coming.....
Megan is #18
The really good one:)
Yes I am a proud parent!
I am her Father!!
So deal with it!!
One thing Lindsey likes to do at night is go in the bathroom and shut the door between her and the humming Berlin. She likes to brush her teeth without 'Traeh Nilreb' at her side. It really is a peaceful silence.
Traeh Nilreb ?
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