After the difficulty of leaving the hospital and then returning, today was a needed good day.
Getting back to the hospital was no easy task. When Laura did arrive the team was there waiting. She was quickly settled in and then given some good meds to sleep through the night. The UCSF team on the 10 Long really does rule!
Today was a better day. She is now on 15+ liters, which is a significant amount, and it will increase her LAS (Lung Allocation Score). She will start Bipap this evening and that should help her sleep better through the night.
A big push is now calories. Eating is very very hard. The effort needed for her to eat lunch is equivalent to use running hard for 10 mins. Just spent afterward. Her recovery time is significant as well. An hour to two later she is still feeling the effects. If she can't get to 2000 cals a day she will go on a feeding tube to make sure she has min cals.
Tomorrow is another day to recuperate from the home journey and settle into a routine. 3-4 walks around the floor a day, 2000+ calories, a number of breathing treatments and the usual pokes and prods.
More to come.
Cheers,
The Z's
Saturday, October 13, 2018
Thursday, October 11, 2018
In and Out
The title has nothing to do with the Squeeze Box song ;) - figure it out
Yesterday afternoon Laura was discharged from the hospital. We had run the gauntlet of requirements, avoided sick kids and had back up upon back up for oxygen needs. The work needed to leave the hospital was over may emotional day and in the end took its toll. Given the events of traveling from UCSF to home, getting settled and a bath, Laura was spent. Couple that with the concerns of not having immediate care a button away and what was to be a nice time at home became too much. Laura could not recover from the exertion. After a sleepless night and conversations with the hospital it was decided it was best to be re-admitted today.
This afternoon Laura we readmitted to UCSF and that is probably a good thing. Laura had a chance to see E and Bear (our dog), take a bath and be home. Even when you are not well home is where you want to be. Given her health the next time she is home will be with new lungs.
To all of those going through this, coming home is a tough choice. For those who do not live in the area, your choice is made. For others that are close it is a tough one. The thought of home is soothing, it warms the heart, it is where we want to be. It is not as comforting at 2 a.m. or reassuring at 5 a.m. For the care givers, you are on 24x7 call. There is no nurse to check meds or pull meds from the refrigerator. Everything is harder at home. Think about this choice. The doctors
Though the last 24 hours was not idea it was nice. E and Laura with Bear on the couch. A funny story and a laugh between breaths. Fractions of good in a stressful period but good.
So now we wait. We race against the body. Laura was more stable while in the hospital but it will still always be a decline. She is losing weight ( a feeding tube is likely as it is so hard to eat and just burns more cals) and everyday everything is just so much harder. She said,"the past few days have been so much harder than before". We both thought we knew what this would be like but the speed is so much faster, it changes everything.
Thank you all again for everything. Our block made paper flowers for her room as she can no longer have cut flowers. #teamlaura has hired Santa's crew to deliver, literally hundreds of packages of shirts. The goal to provide all us of strength (out tribe) and provide other some ease as they go through this,
We know we are in the top few of the LAS (lung allocation score). This is a hard spot. Our relief will come at someone else's lose.
Again, thank you all.
Positive news to follow soon.
The Z's
Yesterday afternoon Laura was discharged from the hospital. We had run the gauntlet of requirements, avoided sick kids and had back up upon back up for oxygen needs. The work needed to leave the hospital was over may emotional day and in the end took its toll. Given the events of traveling from UCSF to home, getting settled and a bath, Laura was spent. Couple that with the concerns of not having immediate care a button away and what was to be a nice time at home became too much. Laura could not recover from the exertion. After a sleepless night and conversations with the hospital it was decided it was best to be re-admitted today.
This afternoon Laura we readmitted to UCSF and that is probably a good thing. Laura had a chance to see E and Bear (our dog), take a bath and be home. Even when you are not well home is where you want to be. Given her health the next time she is home will be with new lungs.
To all of those going through this, coming home is a tough choice. For those who do not live in the area, your choice is made. For others that are close it is a tough one. The thought of home is soothing, it warms the heart, it is where we want to be. It is not as comforting at 2 a.m. or reassuring at 5 a.m. For the care givers, you are on 24x7 call. There is no nurse to check meds or pull meds from the refrigerator. Everything is harder at home. Think about this choice. The doctors
Though the last 24 hours was not idea it was nice. E and Laura with Bear on the couch. A funny story and a laugh between breaths. Fractions of good in a stressful period but good.
So now we wait. We race against the body. Laura was more stable while in the hospital but it will still always be a decline. She is losing weight ( a feeding tube is likely as it is so hard to eat and just burns more cals) and everyday everything is just so much harder. She said,"the past few days have been so much harder than before". We both thought we knew what this would be like but the speed is so much faster, it changes everything.
Thank you all again for everything. Our block made paper flowers for her room as she can no longer have cut flowers. #teamlaura has hired Santa's crew to deliver, literally hundreds of packages of shirts. The goal to provide all us of strength (out tribe) and provide other some ease as they go through this,
We know we are in the top few of the LAS (lung allocation score). This is a hard spot. Our relief will come at someone else's lose.
Again, thank you all.
Positive news to follow soon.
The Z's
Tuesday, October 9, 2018
We may be moving up but we are not moving out, yet.
This has been a very hard two days for Laura. We originally thought that we would be going home yesterday (Monday). As we went through the discharge procedures we had a number of issues come up. In the afternoon we were still lacking a high flow oxygen concentrator, the appropriate accessories. Given that we have a constant flow of kids throughout the house we also had to sanitize it given Laura's current immune system.
Those delays pushed us to today. We were set to go around noon but still had no oxygen concentrator. After the delivery of all other medical needs had happened a concentrator was still no where to be found. At 6 p.m. after hours on calls with Apria, UCSF and Kaiser we were able to have a delivery in the evening. We were set to go home for a few days.
After a short moment of excitement we were informed that Laura's potassium levels and shot up to 6.2. A normal level is 5.5. This was a bigger deal than we thought. High potassium levels can create arrhythmia and a possible heart attack. The doctors took this very seriously and axed our discharge.
After a number of treatments that include dextrose, insulin and other goodies, they will draw blood throughout the evening and track the trend of her levels. If they are trending down tomorrow there is still the possibility that she can go home in the afternoon.
On another topic a few months ago Laura was interviewed for a podcast called The Passion & Purpose Podcast. The podcast features interviews with individuals who either have a profound and inspiring story or have dedicated their lives to the study and understanding of passion and purpose.
The entire podcast series can be found here on iTunes.
Laura's specific interview can be found here.
Enjoy!
Thanks again,
The Z's
Those delays pushed us to today. We were set to go around noon but still had no oxygen concentrator. After the delivery of all other medical needs had happened a concentrator was still no where to be found. At 6 p.m. after hours on calls with Apria, UCSF and Kaiser we were able to have a delivery in the evening. We were set to go home for a few days.
After a short moment of excitement we were informed that Laura's potassium levels and shot up to 6.2. A normal level is 5.5. This was a bigger deal than we thought. High potassium levels can create arrhythmia and a possible heart attack. The doctors took this very seriously and axed our discharge.
After a number of treatments that include dextrose, insulin and other goodies, they will draw blood throughout the evening and track the trend of her levels. If they are trending down tomorrow there is still the possibility that she can go home in the afternoon.
The entire podcast series can be found here on iTunes.
Laura's specific interview can be found here.
Enjoy!
Thanks again,
The Z's
Monday, October 8, 2018
Moving on UP!
With some luck we will be out of the hospital tomorrow. A well deserved and needed respite for Laura. A bath and her own bed with a full night of sleep will be a welcomed change.
We have a solution for high flow oxygen and we have a stable IRI level. IV antibiotics were delivered today and the high flow oxygen should be delivered tomorrow. All goes well we will be home in time for the RedSox to close out the ALDS.
In speaking with on of the doctors this afternoon he informed me that we did move up the list. We are now at 59. He thought that there we only a couple of people above 55 in the region, so we are close.
Coming home means more than just a bath and her own bed. Having the ability to see E at home and to mentally prepare for the transplant is important. Two weeks ago we went into clinic for a regular appointment and we admitted.
For CF patients that read this blog you have probably been here and understand how much it can matter. It is a shock to the system. It raising all the fears and concerns that the disease carries, couple that with a second transplant and some time to prepare is important.
Thank you for the recipes for shakes. I forgot to mention we can't have Vit K so bye bye Kale. Seems to be the staple in most shakes. Potassium has also made the list due to interactions with one of the many drugs.
As always thanks for the comments, posts, emails, txt, phone message on the land line #oldschool and general well wishes.
Cheers,
The Z's
We have a solution for high flow oxygen and we have a stable IRI level. IV antibiotics were delivered today and the high flow oxygen should be delivered tomorrow. All goes well we will be home in time for the RedSox to close out the ALDS.
In speaking with on of the doctors this afternoon he informed me that we did move up the list. We are now at 59. He thought that there we only a couple of people above 55 in the region, so we are close.
Coming home means more than just a bath and her own bed. Having the ability to see E at home and to mentally prepare for the transplant is important. Two weeks ago we went into clinic for a regular appointment and we admitted.
For CF patients that read this blog you have probably been here and understand how much it can matter. It is a shock to the system. It raising all the fears and concerns that the disease carries, couple that with a second transplant and some time to prepare is important.
Thank you for the recipes for shakes. I forgot to mention we can't have Vit K so bye bye Kale. Seems to be the staple in most shakes. Potassium has also made the list due to interactions with one of the many drugs.
As always thanks for the comments, posts, emails, txt, phone message on the land line #oldschool and general well wishes.
Cheers,
The Z's
Sunday, October 7, 2018
Day 12
Well if you happen to be admitted to UCSF during fleet week and you have a view overlooking the bay, you do have a nice view of the air show.
We have had an uneventful weekend, which at this point is what we want, while making progress toward a discharge date. Laura's IRI level are now stable, above 2, while on Coumadin. This is to address the blot clot in her calf. Attaining and maintaining an IRI level greater than 2 is one of the two requirements for discharge. The second requirement is the capability to have high flow oxygen at home. We were able to find a system made by Drive Pharma that will enable 8-10 liters per hour.
The oxymizer pendant will enable her to have high flow oxygen with the hydrator while at home. For those of you with similar needs this may help you. It did take a few days for the team to find this as most patients are not capable of being at home while on high flow.
Eating has become a chore and as her body works harder to breathe her caloric requirements continue to increase. After meals she has a 15-20 min period to recover from eating which uses more calories fueling the cycle. Once home we will have to find a few high calorie (lower in sugar) shakes recipes. If anyone has suggestions fire them across.
Laura is walking 3x a day around the floor. Probably 120 yards per lap. The recovery time for a single lap takes 10-15 mins. It is important to keep up physical activity and build strength. When at home a walk up and down the block 3x a day will be a requirement as well.
With some luck we may be home tomorrow or Tuesday. As long as there is no decline or any significant changes to her oxygen needs we should be good to go. As great as the team is here, home will be a welcomed change.
Her lung function will continue to decrease over time. We have been told that it will be a more aggressive time line that what we experienced in the previous transplant. The reason for this is that in the first transplant we were fighting CF and this time we are fighting chronic rejection. We hope to receive a call while at home but if we do not given the decline we will have to be admitted at some point. Fingers crossed for a call soon.
Thank you again for all thoughts and prayers. Always appreciated.
Cheers,
The Z's
We have had an uneventful weekend, which at this point is what we want, while making progress toward a discharge date. Laura's IRI level are now stable, above 2, while on Coumadin. This is to address the blot clot in her calf. Attaining and maintaining an IRI level greater than 2 is one of the two requirements for discharge. The second requirement is the capability to have high flow oxygen at home. We were able to find a system made by Drive Pharma that will enable 8-10 liters per hour.
The oxymizer pendant will enable her to have high flow oxygen with the hydrator while at home. For those of you with similar needs this may help you. It did take a few days for the team to find this as most patients are not capable of being at home while on high flow.
Eating has become a chore and as her body works harder to breathe her caloric requirements continue to increase. After meals she has a 15-20 min period to recover from eating which uses more calories fueling the cycle. Once home we will have to find a few high calorie (lower in sugar) shakes recipes. If anyone has suggestions fire them across.
Laura is walking 3x a day around the floor. Probably 120 yards per lap. The recovery time for a single lap takes 10-15 mins. It is important to keep up physical activity and build strength. When at home a walk up and down the block 3x a day will be a requirement as well.
With some luck we may be home tomorrow or Tuesday. As long as there is no decline or any significant changes to her oxygen needs we should be good to go. As great as the team is here, home will be a welcomed change.
Her lung function will continue to decrease over time. We have been told that it will be a more aggressive time line that what we experienced in the previous transplant. The reason for this is that in the first transplant we were fighting CF and this time we are fighting chronic rejection. We hope to receive a call while at home but if we do not given the decline we will have to be admitted at some point. Fingers crossed for a call soon.
Thank you again for all thoughts and prayers. Always appreciated.
Cheers,
The Z's
Wednesday, October 3, 2018
1 Week In
Today was the 1 week mark. A mark they we did not expect a week ago. We had hopes of a release this week. As previously mentioned, if we could get her IRI number down (blood thinners) and off the high flow oxygen, we had a shot.
We learned that the drug they were giving her, Coumadin, has a reaction to Vit K. We discussed this as they put her on it and all understood that Vit K would negate the Coumadin. Everyone forgot that her CF vitamins contained Vit K and thus we lost of a week of progress. HUGE disappointment for Laura.
As we discussed going home the doctor's were ok with that but made it clear that if ANYTHING at all went wrong we would be back in the hospital until the transplant happens. That could be days, weeks or months. A respite at home would have been nice. It is still a possibility but the extra week in the hospital does make it harder.
On a positive note the antibiotics are doing their work on the pneumonia. The result does not really change how Laura feels but it does buy more time to find lungs.
They did increase her resting oxygen to 10 liters. This will bump her LAS (Lung Allocation Score) up from 57 but we have not heard what the new number is.
As always she is a stellar patient. Walking daily, eating, though she has no appetite and smiling and laughing. She has found the channel that shows every episode of Friends from back in the day. Pretty funny to re-watch.
Always, thanks again for the calls, emails, txt, letters...etc. It does help. #teamlaura is amazing. The funds raised from the shirts will make a huge difference in the lives of others that are going through this without the support network we are so lucky to have.
Hope to have news of a transplant soon.
Love to all
The Z's
We learned that the drug they were giving her, Coumadin, has a reaction to Vit K. We discussed this as they put her on it and all understood that Vit K would negate the Coumadin. Everyone forgot that her CF vitamins contained Vit K and thus we lost of a week of progress. HUGE disappointment for Laura.
As we discussed going home the doctor's were ok with that but made it clear that if ANYTHING at all went wrong we would be back in the hospital until the transplant happens. That could be days, weeks or months. A respite at home would have been nice. It is still a possibility but the extra week in the hospital does make it harder.
On a positive note the antibiotics are doing their work on the pneumonia. The result does not really change how Laura feels but it does buy more time to find lungs.
They did increase her resting oxygen to 10 liters. This will bump her LAS (Lung Allocation Score) up from 57 but we have not heard what the new number is.
As always she is a stellar patient. Walking daily, eating, though she has no appetite and smiling and laughing. She has found the channel that shows every episode of Friends from back in the day. Pretty funny to re-watch.
Always, thanks again for the calls, emails, txt, letters...etc. It does help. #teamlaura is amazing. The funds raised from the shirts will make a huge difference in the lives of others that are going through this without the support network we are so lucky to have.
Hope to have news of a transplant soon.
Love to all
The Z's
Monday, October 1, 2018
Day 6
Today Everett and I had a discussion on how long Laura had been in the hospital. The days roll on and blend together. It is like a cruise minus the fun, food, entertainment and floor mats in the elevator that tell you that it is Monday morning or Wednesday evening. It is only Day 6.
Day 6 was another long day. Laura is attached to a med pole with 3 IVs, saline and other drips depending on the day. All those hook into different regulating machines that manage the flow. They beep consistently, stop and beep more, all becoming a general annoyance. The yards of tubing do not make anything easier and again become a point of contention. Nothing is simple. Nothing is easy. Everything must be done with others. All the small things that fray the nerves every day.
We are trying to make a push to get home. This is going to be a push for a couple of reasons and the first is related to the DVT blood clot in her calf. They must thin the blood to remedy this for the obvious reasons. There are two forms of blood thinners that are reversible for transplant patients. The key is Coumadin. When we do receive the call for a transplant they can give Laura a drug that will reverse the effects almost immediately. Most others thinners do not react this way.
For Coumadin to work they need to attain a certain level in her blood. Thus far her body is not allowing that level to be achieved. She is on IV Heparin, and that is helping in the short term, but she can not go on on IV Heparin. The Coumadin levels are the first key to a release.
The second requirement is her current need for high volume oxygen. Given the condition of her lungs, any task requires a lengthy recuperation period. This high volume oxygen diminishes the time needed to recover. Recovery then requires less energy which requires less food. Her appetite is gone and the meds to increase that are only so effective. W
The issue becomes high volume oxygen is not available outside the hospital. If Laura can't operate without that is another barrier to exit. We are making strides on this one. Her recovery times are longer than wanted off high flow, here oxygen saturation levels are good without. Some little progress.
Throughout all of this the team at UCSF is awesome and we appreciate all they do daily. They are number one for many reasons.
Friends and family have been great distractions. We are behind on calls. texts and emails but I would image everyone understands. Thank you for all the notes, text, emails...etc.
The founders of #teamlaura have been amazing. The funds will go to great use. We have met others in our situation that struggle to make ends meet. We were able to help some last time and look forward to helping more families in the future. We have wanted to start a foundation post to the first transplant and this is the start albeit a bit later than planned. Thank you.
Going forward we are really in a waiting game. In the last week Laura's Lung Allocation Score (LAS) reached 57. At the time of last transplant she was at 60. We are in the game and hoping we receive a call sooner than later.
Again, thank you all.
Love, The Z's
Day 6 was another long day. Laura is attached to a med pole with 3 IVs, saline and other drips depending on the day. All those hook into different regulating machines that manage the flow. They beep consistently, stop and beep more, all becoming a general annoyance. The yards of tubing do not make anything easier and again become a point of contention. Nothing is simple. Nothing is easy. Everything must be done with others. All the small things that fray the nerves every day.
We are trying to make a push to get home. This is going to be a push for a couple of reasons and the first is related to the DVT blood clot in her calf. They must thin the blood to remedy this for the obvious reasons. There are two forms of blood thinners that are reversible for transplant patients. The key is Coumadin. When we do receive the call for a transplant they can give Laura a drug that will reverse the effects almost immediately. Most others thinners do not react this way.
For Coumadin to work they need to attain a certain level in her blood. Thus far her body is not allowing that level to be achieved. She is on IV Heparin, and that is helping in the short term, but she can not go on on IV Heparin. The Coumadin levels are the first key to a release.
The second requirement is her current need for high volume oxygen. Given the condition of her lungs, any task requires a lengthy recuperation period. This high volume oxygen diminishes the time needed to recover. Recovery then requires less energy which requires less food. Her appetite is gone and the meds to increase that are only so effective. W
The issue becomes high volume oxygen is not available outside the hospital. If Laura can't operate without that is another barrier to exit. We are making strides on this one. Her recovery times are longer than wanted off high flow, here oxygen saturation levels are good without. Some little progress.
Throughout all of this the team at UCSF is awesome and we appreciate all they do daily. They are number one for many reasons.
Friends and family have been great distractions. We are behind on calls. texts and emails but I would image everyone understands. Thank you for all the notes, text, emails...etc.
The founders of #teamlaura have been amazing. The funds will go to great use. We have met others in our situation that struggle to make ends meet. We were able to help some last time and look forward to helping more families in the future. We have wanted to start a foundation post to the first transplant and this is the start albeit a bit later than planned. Thank you.
Going forward we are really in a waiting game. In the last week Laura's Lung Allocation Score (LAS) reached 57. At the time of last transplant she was at 60. We are in the game and hoping we receive a call sooner than later.
Again, thank you all.
Love, The Z's
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