Today was a fun day. Debbie (Jason's cousin) and her daughter Ava made it here last night. They stayed at the RMH with the kids, which allowed me to be at the hospital with Lindsey. Lindsey slept very well last night. She didn't wake up once. So...she was in a great mood this morning.
Debbie has been great, she got right into the swing of things this morning. Had the kids up and was making breakfast when I got there this morning. She put Hunter on the bus while I ran Sierra to jazz band practice. Lindsey settled right into having her and Ava here. This afternoon, Ava went with Lindsey to school. Kevin (Lindsey's teacher) said that they were giggling up a storm. They apparently got a boy laughing and talking, who has been there for a week and not said one word until today. Ava was definitely invited to come back tomorrow. It has been great for Lindsey to have Ava here.
Lindsey's cannula sight is much improved and can go to being changed 3 x week. She is excited about that!
Our friend Kevin was here for his biopsy today. He and his mom stopped by to give Lindsey a gift. It was good to see them. Kevin looks really good. It is interesting to have been here long enough we are seeing people for their 2nd biopsies. It has really helped keep in touch with everyone and we look forward to the visits.
Jason had a long day at the office today. Gage had a fun day playing with his cousins and being the muddiest he has been in months! He is right where he wants to be for now.
Wednesday, November 14, 2012
Tuesday, November 13, 2012
Nov 13, Jason and Gage are off to Oregon
Stacy here.
Jason and Gage left at 6:00 this morning to head home to Oregon. They were driving Kade and Stephanie Thomas's truck back to Oregon for them. It worked out well for Jason, as he needed to return for work. Gage went with him, since it was his turn to go home. I am not sure if I like the idea as I will miss my little buddy. They made it home at about 8:30 this evening. Jason said Gage was a delight to travel with. Thank-you Kade and Stephanie for giving them a ride home the rest of the way!
Nothing to report in rounds today. They are increasing Lindsey's feeds a little at night, since she is eating less during the day. Her weight is going down a little and they want to prevent that. The oral antibiotic will be continued probably until transplant, but we will see. Her INR is 3.4, which is PERFECT! Meaning no shots! She was very grumpy and sad this morning that her Dad left. Once I told her, "this was going to be a long 4 days if she acted like this until her Daddy came back," She seemed to snap out of it. Her dressing change went very well and they may go to 3 times a week dressing changes. It was definitely less red and swollen. Lindsey and I were talking today and decided that we better get out a calendar and figure out how many "fun Friday's" we have until Christmas. We have a lot we need to do to get ready for Santa, especially to come to the hospital. She was mostly worried about getting the cookies made to put out Christmas Eve. She is excited for Christmas!
Sierra and Megan started basketball tonight. They are pretty rusty and pretty excited. At least for sure Megan is, Sierra is questionable.
Jason and Gage left at 6:00 this morning to head home to Oregon. They were driving Kade and Stephanie Thomas's truck back to Oregon for them. It worked out well for Jason, as he needed to return for work. Gage went with him, since it was his turn to go home. I am not sure if I like the idea as I will miss my little buddy. They made it home at about 8:30 this evening. Jason said Gage was a delight to travel with. Thank-you Kade and Stephanie for giving them a ride home the rest of the way!
Nothing to report in rounds today. They are increasing Lindsey's feeds a little at night, since she is eating less during the day. Her weight is going down a little and they want to prevent that. The oral antibiotic will be continued probably until transplant, but we will see. Her INR is 3.4, which is PERFECT! Meaning no shots! She was very grumpy and sad this morning that her Dad left. Once I told her, "this was going to be a long 4 days if she acted like this until her Daddy came back," She seemed to snap out of it. Her dressing change went very well and they may go to 3 times a week dressing changes. It was definitely less red and swollen. Lindsey and I were talking today and decided that we better get out a calendar and figure out how many "fun Friday's" we have until Christmas. We have a lot we need to do to get ready for Santa, especially to come to the hospital. She was mostly worried about getting the cookies made to put out Christmas Eve. She is excited for Christmas!
Sierra and Megan started basketball tonight. They are pretty rusty and pretty excited. At least for sure Megan is, Sierra is questionable.
Monday, November 12, 2012
Nov 12, Monday, Picture of the chin hair
No school today but we kept busy with the Yecks here. Jen cut Stacy and Megan's hair. I can't tell the difference but they love it. Whatever. Lindsey had fun at PT, the playroom, and walks. They are going to change her VAD checks to Q4, from Q2. That means they are going to check her VAD for clots every 4 hours not every 2 hours. That should give her better sleep at night. She hasn't had a clot in months, so I'm good with it.
Yecks left today for Burley, Idaho. Sure nice having them here.
Leaving for Oregon with Gage at 0 dark 30 in the morning. It will be a 'fun' 13 hour drive. Excited to have Debbie Dorny, my cousin from LA, coming up to spend time with the gang while Gage and I are gone.
Jeff con
Yecks left today for Burley, Idaho. Sure nice having them here.
Leaving for Oregon with Gage at 0 dark 30 in the morning. It will be a 'fun' 13 hour drive. Excited to have Debbie Dorny, my cousin from LA, coming up to spend time with the gang while Gage and I are gone.
The Yecks before they left
Out for a stroll with her favorite therapist, Mandy and Sandra
Today's dressing change.
Sunday, November 11, 2012
Nov 11, Sunday, Yecks still here
After our 'hang-over' from our big trip to the City, we returned to our Princess here in her palace.
As of Sunday night the only issue with Linds is the infected cannula site. We think it is looking better, but really who knows. They are definitely not crazy about it, but are treating it the best they can, and it doesn't seem to be getting worse.
Other issues that for now have resolved include:
PVC and irregular heart beats. She hasn't had any for weeks. They are not sure why, but they are gone.
Par Flu. She does not have it, but wants her to avoid direct contact with other patients if she can.
Appetite. Still gets full feeding at night but she is strongly encouraged to eat or drink a little to help with her blood sugar level.
Berlin Pump. Wheels work and ready for business. No clots in months.
Lovenox shots. None needed since her blood thinning level is where they want it.
Blood Draws and pokes. Averages about 2 out of 3 days. A lab holiday couple of times a week.
Walks. Still limited to 1/2 hour and all within the LPCH. They are still working on a formal policy. I remind them of that every few days.
Attitude. Comes and goes. If we let her sit around to much she can get down. We have to work at it. She is working at being nicer to nurses and people she doesn't know. We have decided she needs to act like a 'Princess' not the 'Queen'.
Heart transplant. Day 145, it will be 5 months November 20. Waiting for the perfect match.
Stacy and I. We are doing fine. Gage is keeping my side of the bed warm (Little rascal). We are keeping the faith, hope and prayers. We understand this will be a long process. God has blessed us and will continue to watch over our little family.
Chin hair. Trimming the furry friend? HECK NO! Growing strong! Be looking for the first braid. (You know Stacy just loves it!!!)
No real excitement today with the Yecks here. Church, walks, games, walks, kids going crazy, ya know the usual. There is a teenager down in the CVICU that has been put on the transplant list and is pretty shaken up emotionally. She has been wanting to meet Sierra and ask her questions, so today Sierra went down and spent some time just talking. It was good.
Jeff and I took the boys for a much needed walk back to the RMH. On the way we saw a couple of raccoons in the tree. That was kinda fun. And, I forgot, when we were on the Caltrain Saturday heading to SF we saw a couple of coyotes. It was so funny to hear the Italians behind me go on about these coyotes, about how they must have gotten there, and the only time they are dangerous is if you make sounds like the roadrunner. It was just entertaining listening to their thick Italian accents. They definitely were not from Powder Valley, home of the VB State Champs!
As of Sunday night the only issue with Linds is the infected cannula site. We think it is looking better, but really who knows. They are definitely not crazy about it, but are treating it the best they can, and it doesn't seem to be getting worse.
Other issues that for now have resolved include:
PVC and irregular heart beats. She hasn't had any for weeks. They are not sure why, but they are gone.
Par Flu. She does not have it, but wants her to avoid direct contact with other patients if she can.
Appetite. Still gets full feeding at night but she is strongly encouraged to eat or drink a little to help with her blood sugar level.
Berlin Pump. Wheels work and ready for business. No clots in months.
Lovenox shots. None needed since her blood thinning level is where they want it.
Blood Draws and pokes. Averages about 2 out of 3 days. A lab holiday couple of times a week.
Walks. Still limited to 1/2 hour and all within the LPCH. They are still working on a formal policy. I remind them of that every few days.
Attitude. Comes and goes. If we let her sit around to much she can get down. We have to work at it. She is working at being nicer to nurses and people she doesn't know. We have decided she needs to act like a 'Princess' not the 'Queen'.
Heart transplant. Day 145, it will be 5 months November 20. Waiting for the perfect match.
Stacy and I. We are doing fine. Gage is keeping my side of the bed warm (Little rascal). We are keeping the faith, hope and prayers. We understand this will be a long process. God has blessed us and will continue to watch over our little family.
Chin hair. Trimming the furry friend? HECK NO! Growing strong! Be looking for the first braid. (You know Stacy just loves it!!!)
No real excitement today with the Yecks here. Church, walks, games, walks, kids going crazy, ya know the usual. There is a teenager down in the CVICU that has been put on the transplant list and is pretty shaken up emotionally. She has been wanting to meet Sierra and ask her questions, so today Sierra went down and spent some time just talking. It was good.
Jeff and I took the boys for a much needed walk back to the RMH. On the way we saw a couple of raccoons in the tree. That was kinda fun. And, I forgot, when we were on the Caltrain Saturday heading to SF we saw a couple of coyotes. It was so funny to hear the Italians behind me go on about these coyotes, about how they must have gotten there, and the only time they are dangerous is if you make sounds like the roadrunner. It was just entertaining listening to their thick Italian accents. They definitely were not from Powder Valley, home of the VB State Champs!
Jen teaching the kids a new game. Wow thanks
The Princess giving up her Throne... for a second.
The latest dressing change. Better?
Saturday, November 10, 2012
Nov 10, Saturday, Off to SF with the Yecks
Way to go Powder Valley girls on winning state in volleyball. That is awesome! Molly Smith kept us updated on the scores and the progress through game 5. Congratulation!
Today was Stacy and I's big trip to the City with our friends the Yecks. A whole bunch of incredible people came by to stay with Lindsey and the kids. Lindsey and her 8 year old friend Sadie Parry made up a new cheer / hand shake. It is really cute. I will download the video clip when I can get it. She had one melt down today, but Sierra and nurse Shannon helped keep her together. The nurse, Shannon said Sierra was did an amazing job with her little sister.
Stacy and I and the Yecks took the Caltrain in San Francisco, then walked through AT&T park (that was so cool to walk around on the field) and down Embarcadero Street to Pier 39. We ate oyster sandwiches (well some of us) at the Ferry Building then rented bikes. We rented the 2 seater tandem bikes and rode them to and across the Golden Gate Bridge. Stacy wasn't crazy about her view, but I thought it was great. It was so fun trying to figure out how to drive those bikes with Stacy giving commands, working together, and avoiding traffic! There are a lot of fun things to do on bikes in the City. We hope to do it again when Lindsey is out. When Lindsey called us during her melt down wondering where we were and how long before we came back, we were half way across the Bridge on our bikes and had a long way to go to get back. By the time we got back to the hospital, she was back to herself.
Thanks again to Amanda, Shannon, and the families, Parry's, Steven's, Hansen's, Niccum's, and others, who watched our kids and allowed us a change to get out and work on our marriage.
Funny side note, Jeff and I took some 'college style' pictures and sent them to some of our old college buddies. It had been so long since we had called some of our old friends (Red), that she had discontinued the number and someone else had the new number. After we had sent the picture, we received a response back that she appreciated the picture but didn't know who we were. It was pretty funny.
Today was Stacy and I's big trip to the City with our friends the Yecks. A whole bunch of incredible people came by to stay with Lindsey and the kids. Lindsey and her 8 year old friend Sadie Parry made up a new cheer / hand shake. It is really cute. I will download the video clip when I can get it. She had one melt down today, but Sierra and nurse Shannon helped keep her together. The nurse, Shannon said Sierra was did an amazing job with her little sister.
Stacy and I and the Yecks took the Caltrain in San Francisco, then walked through AT&T park (that was so cool to walk around on the field) and down Embarcadero Street to Pier 39. We ate oyster sandwiches (well some of us) at the Ferry Building then rented bikes. We rented the 2 seater tandem bikes and rode them to and across the Golden Gate Bridge. Stacy wasn't crazy about her view, but I thought it was great. It was so fun trying to figure out how to drive those bikes with Stacy giving commands, working together, and avoiding traffic! There are a lot of fun things to do on bikes in the City. We hope to do it again when Lindsey is out. When Lindsey called us during her melt down wondering where we were and how long before we came back, we were half way across the Bridge on our bikes and had a long way to go to get back. By the time we got back to the hospital, she was back to herself.
Thanks again to Amanda, Shannon, and the families, Parry's, Steven's, Hansen's, Niccum's, and others, who watched our kids and allowed us a change to get out and work on our marriage.
Funny side note, Jeff and I took some 'college style' pictures and sent them to some of our old college buddies. It had been so long since we had called some of our old friends (Red), that she had discontinued the number and someone else had the new number. After we had sent the picture, we received a response back that she appreciated the picture but didn't know who we were. It was pretty funny.
First Base at AT&T park
The bikes
My Woman!
Crossed the Bridge and heading back
Lindsey's phone call and the melt down
We never can truely get away from it. As we shouldn't.
Friday, November 9, 2012
Nov 9, Where's Waldo
Dressing change about the same, maybe a little improvement, but no real change. Will continue with daily changes for awhile.
Haven't received the final word on the para flu test. They anticipate it will be negative, but I just want to know that it is negative.
Dr Axelrod from the CVICU came by specifically to see Lindsey. He was the doctor that took care of Gage the night Gage needed a pace maker. He is a really nice guy. He has promised to show Lindsey his 'Where's Waldo' outfit. We looked for him on Halloween, but never saw him, so he dressed up for her today. It was very nice of him. That is what makes this journey doable. When people go out of there way for the little things.
Way back at the first of this year before any of this excitement started, we planned a vacation with our good friends, the Yecks. Well today they showed up and will spend the weekend with us. Tonight, Michelle Hansen, stayed with the kids and Stacy and I and the Yecks went down University Avenue and ate at a gyro restaurant. Thank you Michelle, we really appreciate what you do.
Haven't received the final word on the para flu test. They anticipate it will be negative, but I just want to know that it is negative.
Dr Axelrod from the CVICU came by specifically to see Lindsey. He was the doctor that took care of Gage the night Gage needed a pace maker. He is a really nice guy. He has promised to show Lindsey his 'Where's Waldo' outfit. We looked for him on Halloween, but never saw him, so he dressed up for her today. It was very nice of him. That is what makes this journey doable. When people go out of there way for the little things.
Way back at the first of this year before any of this excitement started, we planned a vacation with our good friends, the Yecks. Well today they showed up and will spend the weekend with us. Tonight, Michelle Hansen, stayed with the kids and Stacy and I and the Yecks went down University Avenue and ate at a gyro restaurant. Thank you Michelle, we really appreciate what you do.
Where's Waldo
Cookies and swing at PT
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