Well we just found out that this was a dry run. The lungs were too damaged due to the impact of the accident. The fact that we did receive the call is an of itself good and means we should receive another call soon.
We all just went through a crazy roller coaster and your thoughts, comments and prayers made a huge difference.
Thank you all for the thoughts and support.
Sunday, August 16, 2015
Update on surgery
Just a quick update. The Dr just stopped by talk about next steps. They are still reviewing the lungs. The donor was in some type of high impact accident and they are concerned that the lungs maybe damanaged. They will visually inspect the organs in the next 20 min or so and that will determine if the transplant is a go or dry run.
At UCSF
Thank you all for the great comments and notes today. I will try to provide timely updates as we go through the next 48 hours to keep everyone informed.
We arrived at UCSF this morning and where in a room by 8. The team is great. We just finished with the pre op review by the transplant nurse. The UCSF team has gone to the donor hospital to look at the lungs. (The donor is in the bay area but we can not be told where or any details about the donor, why they are donating etc.) There is a 1 in 4 chance that this will be a "dry run". If so we will go home this afternoon and wait for another call.
Going on the assumption that the lungs will be a go, we are scheduled for 1 pm surgery. The surgery typically last 8-12 hours. It can go longer and is never shorter. As the new lungs are en route, the will make a clam-shell incision from one armpit down below the breasts, cut through the chest bone and then back up to the other armpit. When the replace the lungs they will do the left one first then the right.
After the transplant they will wire the bone back together and then suture 2 to 3 layers of skin, gluing the final outside layer. All suture will naturally disintegrate.
Laura will wake up ventilated and restrained. The natural instinct will be for her wake up a pull out the tubes. Not the best idea. Along with the ventilating tube she will have multiple chest tubes inserted as well to assist with drainage.
The next 5 days will be spent in ICU and then another 7-10 days in a room. Obviously this can and is extended often based on circumstances.
The next step is to meet with our surgeon, Dr. Jasleen Kukreja, she is the best in there is so we could not be in better hands.
As we learn more throughout the morning, I will let you know.
XOXO
We arrived at UCSF this morning and where in a room by 8. The team is great. We just finished with the pre op review by the transplant nurse. The UCSF team has gone to the donor hospital to look at the lungs. (The donor is in the bay area but we can not be told where or any details about the donor, why they are donating etc.) There is a 1 in 4 chance that this will be a "dry run". If so we will go home this afternoon and wait for another call.
Going on the assumption that the lungs will be a go, we are scheduled for 1 pm surgery. The surgery typically last 8-12 hours. It can go longer and is never shorter. As the new lungs are en route, the will make a clam-shell incision from one armpit down below the breasts, cut through the chest bone and then back up to the other armpit. When the replace the lungs they will do the left one first then the right.
After the transplant they will wire the bone back together and then suture 2 to 3 layers of skin, gluing the final outside layer. All suture will naturally disintegrate.
Laura will wake up ventilated and restrained. The natural instinct will be for her wake up a pull out the tubes. Not the best idea. Along with the ventilating tube she will have multiple chest tubes inserted as well to assist with drainage.
The next 5 days will be spent in ICU and then another 7-10 days in a room. Obviously this can and is extended often based on circumstances.
The next step is to meet with our surgeon, Dr. Jasleen Kukreja, she is the best in there is so we could not be in better hands.
As we learn more throughout the morning, I will let you know.
XOXO
The Call
Good morning everyone. We received the call this morning from UCSF and are now going through the admission process. We will keep you all posted as we learn more.
Thursday, August 6, 2015
A better July
Hello friends,
After a tough June we finished the month ending IV antibiotics and entered July with hope. After IV there is usually a window of better lung function and easier days. This was the case and was a great advantage as Laura started Pulmonary Rehab.
Laura entered John Muir's Pulmonary Rehab program with some hesitation and skepticism but with an amazing team the experience and results have been good. The rehab is 3 days a week and ranges from 3-4 hours. It is not easy but the effort has increased Laura's strength and endurance, both needed for the transplant. Thank you to the team at John Muir for all your encouragement and hard work.
We also had a check-in with the UCSF team. Laura's oxygen flow has increased and thus her transplant number increased as well. Again, there are number of factors that go into the number but the increase in oxygen to 6 liters per min has elevated her score to 47.3. The doctors say we are in the zone and should be ready for a call at any moment. We are ready and waiting.
The John Muir team recommended a new treatment call the Vibralung Acoustical Percussor. This is a crazy acoustical inhaler that splices sputum from the lungs. It is house/techno meets health. Here is a view If you have not guessed Laura is below the average age in ALL rehab classes.
Toward the end of the month we also met with the team at Kaiser for the normal checkup. The results were ok, lung function is still at 26%. No decrease is great news! We did learn that Laura qualified for Orkambi. Orkambi is a combination of Kalydeco (which is a miracle drug that can make CF disappear in younger patients) and lumacaftor. The goal of both is to make the CF gene disappear. Pretty amazing work by the bio-geniuses. We do not have any expectations that Orkambi will show drastic improvements but hope for a slight increase in lung capacity.
As we enter into August we hope for the call soon and look forward to celebrating Everett's 8th birthday.
I can't say enough about the effect of your thoughts, prayers, emails, txts and calls. It is really great to hear from all of you and it makes a difference. We have been taken completely by surprise on the reach of our story. There are a number of people that are one degree away and share a very similar CF journey. The blog and video have exceeded 8,000 people in reach in 35+ countries. Knowing that you have that many people in our corner makes us feel very blessed.
For our local support network, you are amazing. We just can't say enough.
Enjoy the last weeks of summer and hope to post something soon.
Love
The Z's
After a tough June we finished the month ending IV antibiotics and entered July with hope. After IV there is usually a window of better lung function and easier days. This was the case and was a great advantage as Laura started Pulmonary Rehab.
Laura entered John Muir's Pulmonary Rehab program with some hesitation and skepticism but with an amazing team the experience and results have been good. The rehab is 3 days a week and ranges from 3-4 hours. It is not easy but the effort has increased Laura's strength and endurance, both needed for the transplant. Thank you to the team at John Muir for all your encouragement and hard work.
We also had a check-in with the UCSF team. Laura's oxygen flow has increased and thus her transplant number increased as well. Again, there are number of factors that go into the number but the increase in oxygen to 6 liters per min has elevated her score to 47.3. The doctors say we are in the zone and should be ready for a call at any moment. We are ready and waiting.
The John Muir team recommended a new treatment call the Vibralung Acoustical Percussor. This is a crazy acoustical inhaler that splices sputum from the lungs. It is house/techno meets health. Here is a view If you have not guessed Laura is below the average age in ALL rehab classes.
Toward the end of the month we also met with the team at Kaiser for the normal checkup. The results were ok, lung function is still at 26%. No decrease is great news! We did learn that Laura qualified for Orkambi. Orkambi is a combination of Kalydeco (which is a miracle drug that can make CF disappear in younger patients) and lumacaftor. The goal of both is to make the CF gene disappear. Pretty amazing work by the bio-geniuses. We do not have any expectations that Orkambi will show drastic improvements but hope for a slight increase in lung capacity.
As we enter into August we hope for the call soon and look forward to celebrating Everett's 8th birthday.
I can't say enough about the effect of your thoughts, prayers, emails, txts and calls. It is really great to hear from all of you and it makes a difference. We have been taken completely by surprise on the reach of our story. There are a number of people that are one degree away and share a very similar CF journey. The blog and video have exceeded 8,000 people in reach in 35+ countries. Knowing that you have that many people in our corner makes us feel very blessed.
For our local support network, you are amazing. We just can't say enough.
Enjoy the last weeks of summer and hope to post something soon.
Love
The Z's
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