Day what?

So the days are all a blend.  Everyday is like the next with nothing significant to differentiate one from another.   If you have ever taken a cruise, you are familiar with the the floor mats in the elevators that tell you what day it is, Sunday afternoon or Wednesday morning.  We need those. The free open bar would be welcomed as well,

The past few days, like others are up and down.  There are moments where she feels ok.  OK is the best we can do, it is not good but not terrible. Between the tube feeds and management of her blood sugars it usually just sucks.  

The waiting is hard and has no end in sight. It could be tomorrow and it could be in 3 months.  Someone with little bedside manner or awareness mentioned that some people have waited 7-8 months in the hospital for a transplant.  REALLY!  Let's have some awareness of the audience people.  The time away is hard enough as is.  To place that kind of timing on it is just brutal.  In reality, that is not likely for us.  

As we wait, we have to again thank ALL the team. They are working for #teamlaura.  When a patient has as many treatments and visits per day as Laura does the patient and their friends and family have the opportunity to know the staff and vis versa.  There are some good stories that are shared that break down any walls ASAP.  The team goes out of their way to do what they can for Laura.  They are part of #teamlauara. Thank you all. From William the garage attendant to the RNs, NPs, Drs, PT, RT, housekeeping.... amazing.

Thank you all as well.  Sunday dinners are great and appreciated as are the carpools, play dates, sleep overs...etc. 

We could not have gone this far without.  

Appreciate it all,
Love the Z's


Please excuse the typos and grammar mistakes, it is late.

Moving slowly, literally

We are starting to revisit testing.  We have been here so long that they are now retesting Laura to establish a new baseline or update her charts.  Two of the standard tests are the FEV1 and the 6 minute walk.

The forced expiratory volume test (FEV1) test the amount of air a person can forcefully exhale in 1 min.  The measure is a bit confusing when explained that said, on September 11th she had a score of .9, yesterday she blew a .5, this is significant drop.  It is no surprise that this has gone down given the situation.

She also did the 6 minute walk, simply, how far can you walk in 6 min. In late September she walked 600' in 6 min, this time it was around 420'.  Usain Bolt can rest easy.

These results have increased her number yet again.  We are at the top and it just becomes a waiting game for a match.

The tube feeds are still a work in progress.  Finding the right amount and the right volume to gain weight while not feeling terrible all via tube feeds has proven harder than expected.  Hopefully a solution is found soon and a few nights of good sleep can be had.

Love to see the shirts everywhere.  A surreal experience. More news coming on a second run.

Thanks again for all the support.

The Z's

Another Monday

Jumping right into it.  The 24 tube feeds are creating havoc on Laura's stomach. A constant upset stomach that shows no mercy, throughout the day and night. They continue to try other meds to help limit the discomfort and try to figure out a solution that is more comfortable.  In the end, the tube feed is working and helping to stabilize her weight.  She has to maintain her weight to stay on the transplant list. 

We did have a spirometry test today. The last test was on September 11th.  On the 11th her FEV1 was .93 today it was point .53.  Not a big surprise given the increase in her oxygen needs.

I am not sure we have appropriately thanked the UCSF team.  The ENTIRE team on the 10th floor has been awesome.  We interact with dozens of people per day and they really do try to make Laura feel better.  Thank you to all on 10Long who have made the stay as comfortable as possible.

Hoping for a call soon.  Everyone has an opinion we should start a pool. A 50/50 pool for the foundation.

Thank you again for all the support.

Cheers,
Kevin

Into the dog days

We continue to wait.  It is a real grind and each day is very similar to the last and everything gets just a bit harder.  

Laura's has been fighting to keep her weight up and with the addition of the feeding tube has been able to gain a pound.  It is just so hard to keep it on as the energy her body needs is so high.  She is burning calories at a blistering pace. 

With the addition of the tube feeds, the team is trying to control her blood sugars.  Last night they were all over the place and she twice went hypoglycemic. Moving the tube feeds from 12 hours on and 12 off to a consistent 24 hours on may help.

She is continuing to use the bipap machine in the evening and once during the day for a recovery nap. She is still at 15 liters with 25 liters for recovery.  

The photos of the shirts are amazing.  Keep them coming.  A second run is going to be placed so check out #teamlaura for more details.

Cheers,

The Z's

Day 25

WOW, Day 25.  

We did have a 20 hour break there for one day but that was it.  Time blends together now.

Today was a stable day.  They took her off of one of the antibiotics that is on a two week cycle. With that gone she can walk with just air and not the pole with bags hanging.  It is a welcome break for Laura.

No change in other meds, lung function...etc.  Laura is managing the feeding tube and bipap well and hopefully she can rest tonight.  A few nights of decent sleep in a row will make a difference.

A calm day.

Cheers to all,
The Z's

Lots of air

The LAS (Lung Allocation Score) is an algorithm that know one has ever actually seen and only in theory understand. We were informed that Laura's LAS is now at 89. This is a huge number.  If you remember at the time of her last transplant she was at 60.

They raised her score due to her oxygen needs.  When she is resting she is on 15 liters when she moves around, takes 10 steps to the bathroom, she is on 25 liters.   As previously discuss, when a persons needs are above25 liters they have to be placed in ICU. ICU can facilitate delivery of up to 50 liters. That is like a blow dryer.

The feeding tube was finally placed correctly and Laura now is receiving half of her daily caloric needs via the tube.  This does relieve the stress of eating.  For those of you going through this for the first time it is scary.

There is a mental fight that happens that you want to eat your food, you think you are healthier if you consume food normally.  It take allot of energy to eat, especially when you are sick, that energy is a precious commodity at this point and the tube saves that energy for your general well being.  It is also a mental strain to know you have to eat.  Laura stresses about the need to eat 2000 calories.

The final plus to a feeding tube is that it does relieve some of the bloating or the feeling of being bloated. The tube actually goes through the stomach and into the intestines, thus the relief.

Thanks again to everyone for the turnout at the Commons.  Awesome to see you all in the photo.  The article was great as well. More to come on the foundation.

Cheers,
Kevin

Another big day

Like life you just want a day that does not have big highs or low lows.  Today was not a balanced day in the middle.

To start we now have an LAS of 74.  That is a big f@*#ing number.  That is good and means we are ready to go.  It also means Laura is really sick.

The morning encompassed all the doctors, and their teams, visiting about what will happen in the coming weeks if there is not a transplant. We are in a good place. 100% oxygen saturation, at 15 liters,  heart rate in the high 80s/low 90s...  Again we are trying to slow the decline. 

If we decline more rapidly they can increase oxygen to 25 liters outside ICU.  In ICU we can go to 50 liters. There is always the concern of desaturation and that is a sign that the lungs are not able to expel the Co2 .  If we hit this point then we start looking at a trach or the ECMO machine (Extracorporeal Membrane Oxygenation).  This is where they take the blood out of the body, scrub it for Co2, add oxygen, and pump it back in.  All in real time non-stop. We really do not want to get here.

After this conversation and a big nap on the BiPap machine the afternoon was better.  Good color, went for a walk on the floor (30 yards or so) had lunch. 

The late afternoon and early evening went back to shitty.  Given the work she needs to do to eat and recover, it was decided to go onto a feeding tube.  We discussed this with the team and everyone was on board.  The stress of eating, trying to managing calorie intact and actually recovering from the event of eating is taking too much energy.  A feeding tube will help all of this.

The tube is over 2.5feet long.  It goes through her nose, through her stomach and into the intestines.  The placed it with a machine that can follow the magnet at the end of the tube.  She was amazing when placing it but they did not place it far enough. She has been waiting to have this replace for 2 hours.  This really really sucks.  At 9:30 it was still not placed.

So that was our day.  Hope your day was a bit less emotional.  

Thanks to all who participated in the photo.  That was really great.  We do read the comments, txt and emails on all of them.  We (I) click like but would like to say more when time permits.

Next steps, beyond waiting, is to try to find a rental.  I did reach out to the family we rented from before.  Maybe we get lucky due to the new 30 day rental rule in SF.  Looking forward to another successful recover period in Cole Valley. 

Elon hasn't returned my request yet for a car with a sticker.  We will see. :)

Hope you are all well.  Thank you for the support.

Love,

The Z's