Settling In

Soooo good to be out of the hospital.  We are fortunate enough to have a great place with a view and to sit and relax and watch the weather last night was nice.

The goal now is to just recovery.  We have an apt today for a blood day and have a bronch on Tuesday.  Beyond that Laura has no other apts.  She does have a number of treatments that she has to do daily that require a few hours.  Couple those treatments with 3 walks a day and her dance card is full.

Last journey Laura had terrible edema that required her to go back in.  Given that we were in the hospital longer this time post op and she seems to be shedding the water weight appropriately we hope there is no secondary visit.  

Some advice for those going through this for the first time, pay attention to how the change the dressings.  The IV3000 tape(?) sticks to itself ALL the time.  It is an art form.  Drainage has been good and with the exception of a once ounce outflow all has been going accordingly.  Oozing is ok.  Don't panic.

Not the best photo to show it but today in between storms there was a rainbow.  Hopefully a sign of more good luck to come.

Tomorrow is a recovery day for Laura.  Walks, treatments and rest.  Hopefully coupled with some good food through out.  

Cheers,
The Z's

Surprise!

This evening they released Laura from the hospital! 

After removing 2 of the 3 tubes yesterday, they removed the final chest tube today and said get out.  Given that her edema was good and that her balance and ability to walk were strong they thought it was fine for her to go to the apt.

Leaving the hospital this evening was the first time in over 70 days that she has been out of the hospital.  Clean, fresh air was a welcomed change.  

We are staying in Russian Hill near our old apt. so ZA Pizza was the homecoming meal of choice.  Still a solid pie.

Now that phase 1 is behind us we are on to phase 2, recovery.  Building strength and endurance is the goal for the next 6-8 weeks in SF.  Short walks multiple times a day is the start and we will work up to longer walks around the city. 

Tonight she will work through the new meds.  The first time we went through this everyone was a bit overwhelmed by the number of meds, 25+ pills.  For those going through this for the first time, it will become second nature.  For the care giver, make a copy of the medication sheet and keep it in your purse or wallet.  There will be times when you need to reference it and it is best to have it handy. 

The routine will likely change a dozen times before we leave as her body recovers and then continue to be optimized going forward.  Change is ok.  Doses will go up and down, the kidneys will have issues and you will work through them.  Don't panic.  

Amazing day for all.  Thank you again for all the support, emails, txts, cards..etc.  Sorry we have not been able to respond quickly but we do read everything and share all the communications.

Cheers!

The Z's

Continued Progress

Laura is on the mends!

She is continuing to improve daily.  Her walks have increased to two laps of 10L (800') multiple times a day.  She spends more time sitting now than in the bed. All the rights steps to moving on.

She still has two chest tubes in and a third drainage line from the heart area.  They continue to produce less fluid by the hour which is a good step toward release.  The goal is to remove all three lines this week.  Once that is done she will be set free.  As we approach the 70 day mark this, fresh air and day light will be a welcome change. 

Once released we will be in SF for another 6-8 weeks.  Given the daily appointments we must be in SF and cannot cross the bridge.  Thankfully we were finally able to secure housing via friends.  Thank you all for the assistance in making that happen. To those friends a huge thanks for allowing this to happen.

As we get the paperwork started for the foundation, housing is a major issue to be addressed.  We have been lucky in both occasions to find a solution but it is difficult given the great Bay Area market.  Hotels and rentals are expensive. Hopefully we will be able to defer some costs for other CF and lung patients in the future.

We hope everyone had a great holiday.  Let's get the kids back to school!

Cheers,

Happy Thanksgiving!

A bit tardy on the holiday greetings but want to wish everyone a Happy Thanksgiving.  We hope you had the opportunity to celebrate with friends and family. 

The spirit today on the floor was great, everyone was on the same team.  All silently acknowledging that no one was where they want to be but supportive of everyone that was there with them.  Big smiles, well wishes from staff, guests and patience.  

Laura had a stream of family in and out of the hospital today on rotating shifts.  Throughout the day we read the cards that have been sent, emails and texts from all of you.  Thank you all for the well wishes.  

Today was a good day.  Laura went for multiple walks.  We are still on a walker (need to buy tennis balls) and have the pole trailing throughout that said, she is up to a full lap of the 10th floor, 500' or so and continues to increase the pace with each lap.

She did have a turkey dinner with all the sides.  First meat in months!  She had no issues eating and actually enjoyed the meal.  

Nothing goes without saying.  The list that we have this year is long and includes all of you.  Impossible to think how we would have made it this far without the tribe.  I am not sure how to express our gratitude and I am confident that I will never express it to the full extent.

Though we do not know the donor and their situation we are thankful for their decision to be a donor and acknowledge that this Thanksgiving and holiday season will be tough. If in the future we do meet them or they do know that Laura was the recipient I want them to know how much they mean to us.

Raise a glass to each of you. We hope you all have a fabulous holiday weekend filled with memories. Enjoy the clean air and be safe of the roads.

Cheers!!!!!!

The Z's

Out of ICU...again

Laura is back on the floor!  There is always a number of moving parts and the next weeks will be up and down depending on the moment but they did move her onto the floor.  

The first days post surgery are active and today was no exception.  She is free of all tube minus her port which is still accessed.  The feeding tube was removed today as she passed the swallow test!  She did get a bit carried away after and drank a small milk and smoothy.

She did walk from the ICU to her room on the floor with out issue.  She was aided by the pro walker but that was also due to the fact that she still has three tubes connected to her lungs and heart.

As she settled into her room it was great to have so many nurses, RT's and others come by to cheer her on.  The common theme was that we are sooooo excited that you had the re-transplant and can't believe you are already on the floor. You look amazing! I can't believe you had the re-transplant and a washout. OMG! Congratulations!  Walking down the hall people are congratulating us at every door.  As I came back the floor our past nurses would stop me to chat and learn about what happened.

I cannot image being on 10 at UCSF.  As the husband I am obviously invested but today it was evident that I was not the only one.  The floor, after 45+ days and a previous transplant, was pulling just as hard.  Given their jobs they see his often, to be this invested is amazing!

I/we thank the team everyday but today the congratulations and excitement carried us all.  Pretty special.

We have more ups and downs in the weeks ahead but it is great to know we are a tribe working together.  #teamlaura is in full force.  We are excited to carry that forward with the foundation and continue to enable others to have the support that we have.  I over heard a conversation in the elevator about how hard it was to deal with the cost of parking.  Food, hotels, travel add up very very quickly.  To know we can make a difference is exciting.

Thank you all for the support you have given us. Truly incredible and I can never express our appreciation well enough for you to know.

Cheers and love to all,
The Z;s

Good progress

Today was a good day or progress and the first day of the new normal.

Laura had multiple tubes removed today. The NG tube was pulled, the central line that was connected to her jugular was removed.  This was the mainline in that connected the tree of 11 IVs.  Here IV into here leg was removed as well.  She has her port accessed, an IV into her wrist and her feeding tube in.  All else is gone.  A stark difference to 48 hours ago.

Laura sleep well and that changed the day.  She complete two walks for about 40 yards on her on power (she does use a large walker).  She also spent time sitting up in a chair.  It is all about waking up the body and moving.  This will start to strengthen the muscles and also diminishes the pain.

There was no swallow test today, so they will try again tomorrow.  Once she learns how to swallow again (making sure liquids go down the right pipe) she can move onto soft foods. A Vitamix turkey is around the corner.

If she continues on this path we could be back on the main floor by Tuesday.  A bit more space, a lot less noise and commotion is appealing.

If we can string a few good days in a row it should make all the difference in attitude, sleep and progress.

Cheers,
Z's

Tough progress

Laura is making progress but it is a grind.  As far as progress went today was a good day.  They removed two of the four chest tubes. The front tube are related to air more than drainage and where no longer needed.  They also removed the NG tube that was placed in her stomach to assist with the removal of gases and bile.  

They did start her back on tube feeds and her body is receiving the nutrients well. Sugars are in line and all seems to be going well on that front.  They did the swallow test and she did not pass.  The test is to make sure water goes down the right pipe and she does not aspirate. She did not pass today but there are number of reasons why that could happen.  She has had multiple tubes down her thought for 4 days.  This causes numbness, irritation...etc.  She has been out cold or sedated for hours and it does take time for the body to shake that off.  They will try again tomorrow.  Once she passes she will start eating soft food and then onto more solid food in due time.

They did another bronch today and that came out great.  They will do one each day for the first week to make sure the lungs continue to look strong and clean.

She did stand up today and march in place.  She moved from the bed to the chair and sat in the chair for 20 mins.  The movement helps the pain and stiffness.  She is still in pain but the ablation and the meds are working. 

A new technique in the transplant process is the addition of ablation to numb the pain.  It does not work on all patients but it does appear to have been successful with Laura.  This enables her to recover with less medication.

Since last night was such a bad night we kept her up most of the day so that tonight she can get a great night sleep.  A sedative and some melatonin should help.  She is sleep well now.  She was having hallucinations due to other meds.  Those were changed and appears to have been the solution because she is now sleep with no issue.

Tomorrow is a big PT day. A walk out of the room. Multiple respiratory therapy sessions at 30-45 min each will help get everything moving.

Thanks to a great day with both teams on 10ICU.  We have the best of the best.


Please excuse the grammar and typos - long day.

Cheers to all.