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.

All is good

A quick update.  Laura had the breathing tube removed earlier today and was then placed on bipap for four hours (a new protocol).  She is now on a transition from 5 liters to 0.  She is breathing on her own at 100% oxygen saturation.  Kidney function is coming back in line as well.

They did have her sit up for 20 minutes with limited to no support. She was able to life her legs and knees while sitting on the side of the bed.

More details to come but we are now onto the next steps of recovery!

Cheers to all.
The Zs

Wash out

This evening they did a wash out of the lung cavity.  Due to the amount of blood and liquid in and around the lung they decided it was best to go back in wash out the area. 

They went in across the chest in the same incision that they did the transplant.  The surgery took just over 2 hours and the doctors have their expected outcome (their words). Hopefully in the next 24 hours the drainage will stop to the point where they can remove Laura from the ventilator.  

At this point she is doing most of the breathing on her own and the ventilator was only there for support and in case they needed to operate today.  The breathing tube is extremely uncomfortable and one of Laura's biggest anxieties, so the faster it is removed the better it will be for her.

There is some worry about her kidneys.  They have been taxed due to the amount of medication she has been on over the past months.  They were elevate a week ago and then went back into normal levels.  They are now elevated again.  This is not uncommon after a transplant but still something that is being watched.  She is being hydrated while on IV and hopefully it is just a matter of the kidneys restarting after the surgery.

Hopefully we have an easy night and have a smooth recover tomorrow.  

More to follow.
The Zs

A tough morning

They have been bringing Laura in and out as her discomfort ebbs and flows.  She is alert when awake but it is super frustrating for her as she is still intubated and can not communicate easily.

She wanted to know when she could go home.  Like the positive thoughts, even if she is ahead of the plan.

They completed a CT scan early this morning and it did show that there was still a significant amount of blood in her lung cavity.  Due to that they are going to operate again this afternoon.  We are just waiting the OR.  This "wash out" surgery is not uncommon and often happens with the second transplant. The surgery will take a few hours and then she will return back to ICU and recover over night.  While in surgery they will do the first post op bronchoscopy (which sucks when awake) while she is under, so that is a win.

More to come after surgery.

New Lungaversery Date

What a day. As I final sit down to take a breath (and have a drink) it is overwhelming to think about the last 24 hours.  All this is exaggerated even more by the amazing outpouring from all of you.  The emails, comments, txt, vm, photos...etc. that were shared are amazing. Thank you all. 

The earlier posts were quick to keep you all informed.  To provide a bit more detail... Laura did very well in surgery, but it was hard and took over 10 hours.  The second transplant is more difficult, there is scaring that must be dealt with as well as numerous other details.  We were aware of some but not all.  The amount of blood and fluids that were needed for the surgery was staggering.  10 units of blood during surgery and 2 units after, platelets...etc. Everything was described as 10 units of this, 12 units of that.  Scary volumes.

After Laura was back in ICU there are a few issues were are dealing with.  The right lung was harder to replace due to scaring.  Managing the scaring caused serious bleeding.  As of this evening her right drainage tubes had collected about 1250ml of blood.  With the addition of two units and platelets this afternoon as well as a lowered blood pressure we hope this will naturally correct itself.  If it does not we will have to go back into surgery to have the blood and fluids removed.  

This surgery would entail them making an incision to access the lungs and essentially vacuuming out the remaining blood and cleaning the area. Not a technical description but accurate.  My new book, Lung Transplants for Dummies will be released soon.  Not a complicated surgery but non the less a serious surgery.  This is not uncommon and the team is not worried.

I remember from the last transplant the tree of meds looking so intimidating with two rows of pumps and medication hanging off the top.  Laura out did herself this time with 6 drainage tubes in her chest and over a dozen IV meds.  

They accessed her internal jugular vein and then added another tree on the side of that.  The drug list is long and serious.  She is on propofol and it is amazing to see her reaction when she is on a lower dose and wakes us.  The effectiveness and speed at which these drugs work is pretty incredible. 



Two of the new pumps are related to issues with the pericardium.This is the membrane that encloses the heart. As part of the first transplant they had to cut through this membrane as a result when healing it thickens.  For the re-transplant it becomes more difficult to manage the bleeding and the fluid can build up requiring another pair of drainage tubes. 

They did have to insert another NG tube (nasogastric tube) to remove the air that was building up in her stomach.  This NG tube is about the diameter of a pencil and inserted through her nose into her stomach. The tube is then connected to a pump and the gases and fluids are collected.  Luckily she was out cold and will not remember this. 

Laura is still intubated and will remain on the ventilator until we have a grasp on the bleeding.  If she was to have surgery tomorrow they would have to reinsert the breathing tube so they thought better of it to leave it in over night.

She was able to respond to voice commands, move her fingers and toes, squeeze my hand and open her eyes at multiple points in the day. Tonight they will sedate her and let her sleep through.  Tomorrow we have rounds at 7 and will learn more based on the progress of the evening.  37 hours later it is time for some sleep.

We cannot thank the team enough #UCSFLungtransplantBadasses.  All of the Doctors, NPs, RNs, RTs, anesthesiologists, endocrinologists, pharmacists, chaplain... all amazing! 

To share a story, our pharmacists came by today jumping up and down so excited that the re-transplant went well.  As she was one of the people managing the pre-op testing she knew in advanced what was going on.  She was so excited that Laura was going to receive the transplant she avoided us all day yesterday because she did not think she could keep it a secret. She thought she would give it away.  That is an example level of connection we have from the team.  A similar story happened with one of the RNs.  Just can't say enough positive things about this team.

A big step forward. More to come tomorrow. 

Love,
The Z's

Success!

I just spoke with the nurses and the surgery was a success.  It lasted about 8 hours and all seemed to go as planned.  We have not had an official briefing yet from the doctors and expect to have more details as the day goes on.  On to the recovery phase.

Thank you again for all ongoing support. We could not have made it this far without you all.

Cheers!

We are in surgery

At about 8 this evening Laura went into surgery.  We expect the surgery to last 10-12 hours.  As we learn more we will share that information.

Thank you for all the thoughts and prayers.

The Zs

First Call

We received the first call on lungs.  Given the five false alarms last time we are cautiously optimistic.  If it is a go, they will start the re-transplant this evening.

More to come.

Cheers!

The clog

Always ups an downs.  Last night in the early hours Laura's feeding tube clogged.  This is a significant issue as she is receiving all of her nutrients via this tube.  If the tube can't be cleared then they have to pull it and replace it.

The tube is over 2' long.  It is placed up the nose, down through the stomach and into the beginning of the intestines.  It is not a fun process.  Radiology has to be involved to make sure it placed correctly.  This takes sooooo long.

Here is a picture of us at 2 in the afternoon trying to break up the clog with Coke and a syringe.  This took over an hour of small push and pulls until it finally pushed through.  One of the NPs had a wire that he was using to rotor rooter the tube prior. CRAZY!



Laura's air flow was increased and in doing so her LAS is now 91.  We did learn today that they have had offers for organs but have turned them down, waiting for what they think are the right ones.  As hard as it is now, it can be worse and since it is not worse they are waiting for the better lungs.

As we enter week 8 (not counting the early September stay) hopefully our number comes up.  When we first checked in for this a nurse commented about people being in the hospital for months.  We had no idea that we would be one of them.  

The 10ICU team ROCKs.  Thank you for the support and care.  Same applies for the 10L team.  We are very lucky to be at the best hospital.

Thank you all for being here with us.

Cheers,
The Z's

Progress with the Kindeys

We had some good news today.  Laura's kidney numbers are down more and back in line with where the must be for a transplant.  A huge relief.

We had a nice walk in the hall today. Not far but it did get her out of the room for a few minutes.

Given the continued decline in breathing, they want her to do the bipap more often.  The goal is to make breathing easier and less of a stress on her body.  It will also keep the CO2 level down.

Enjoy the weekend.

Cheers!

This sucks!

Day XX.  It may be day 45 or 50, I really don't know but I do know it sucks.  Laura is a champ, grinding it out.  I can't put enough emphasis on the grinding.  Everyday she fights to keep it all moving ahead.  There is an end in sight but at times it is not visible.   ICU is not the St. Regis or a good Best Western for that matter.  It is taking its toll.

I was going to do an infographic on this journey.  Miles driven each day (48.2), ave pace( 35mph but feels like -50)... hours in the car (too many), just something different to show the journey.  ((New stat, how many dumb asses can stall on the Bay Bridge after midnight on the same night?  (BTW, jackass in the '94 Jaguar tonight, did you really think it would make it. You drive a 90's Jag.))  That probably eliminates me from the loan list on the new electric Jag). Then I realized I it would be an exercise in ugh.  The ughs at times seem to outweigh everything else and today the ughs had the advantage.

Everything builds up to make everything harder.  Add a less than comforting nurse to the mix and that just adds to the suckiness.  (BTW, UCSF nurses rock!  We have had soooooo many amazing nurses, this one is just an outlier.  We really can't say enough about the nurses and the greater team.) Today was just hard.

Blood gases (CO2) went up pass 80 for the first time.  Not a surprise but still adds to the suck of the day.  Hopefully more time on bipap will change that. Kidney numbers stayed at 1.7.  More fluids were the focus of the day, we will see the results tomorrow and hopefully we can continue to drive the numbers down.  She had one blood sugar incident that was remedied quickly.

I did find a few photos that changed my spirits.

Hopefully we can re-transplant soon.  #teamlaura is ready.

Cheers All,
The Zs

Some prorgress

At this point we have left good days behind us.  Each day is really hard and ICU has benefits and negatives. 

Physically Laura's lung function diminishes daily and the efforts needed to breathe increase.  More time on the bipap is the solution at this point.  That means that all of the uncomfortable side effects of the bipap are the byproduct of her need to breathe and keep the CO2 levels down. 

The process is also mentally hard.  We are approaching 50 days in the hospital. Poor sleep, stress, questions about next steps, timing are always present.  Everyday is the unknown. Will there be lungs today, if not what will go wrong and how hard will the day be.  No choice but to grind through but it is a grind. 

All that said, Laura is amazing.  A battler, a fighter, a grinder all to the X degree.  I am proud to call her my wife.   She will fight through this.

As far as updates on the day.  The kidney numbers are looking better.  She is down to 1.7 today from 1.9 yesterday. It appears that there was just not enough hydration.  In the next couple of days we should see more improvement and can move past this scare.

Laura also had to complete another six minute walk.  Today she did her third walk in the past 7-8 weeks.  The first was around 600', the second 420' and today she completed 144'.  This walk took 20+ minutes to recover from.  Think about that 144 ft in 6 minutes.  If we extrapolate this (without degradation) it would take her 3.7 hours to run a mile. That means a marathon would take over 4 days.

Thank you again for all the support.  

Love,
The Zs

Back to the ICU

The past 2 days have been tough and today it really went over the edge.   Laura could not catch her breath, stomach issues persisted, headaches, hot flashes and elevated kidney function numbers.  All in all just a shitty day.

The difficulty in breathing is obviously due to the decline in lung function as the chronic rejection continues.  Bipap is a working solution and does help.  The question will be how long will bipap work.  Brings up a great deal of anxiety and nervousness.  The next step will be a trach and as we learn more about the procedure and the benefits we see the value.  Hopefully we are re-transplanted prior to needing that.

Given that Laura is on a 24/7 tube feed, her stomach is just a mess.  They did switch her to a higher protein, lower carb formula but that has not really changed how she feels while on tube feed.  The endocrinologists have tweaked her insulin and appears that there is some stability.  Knock on wood.

We spent sometime on the discussion of headaches and dizziness and we hope that it was just a matter of dehydration.  This would also explain the elevate kidney numbers.  We really hope it was as simple as accessing her port and restarting continuous fluids. 

For those going through this for the first time, especially with CF, get the port.  It is a daunting decision at the time.  You feel as if you are giving in a bit or losing to the disease.  It makes life much easier.  Your veins are probably like Laura's, super sensitive and worked over from being poked over the years.  This elevates those issues immediately.  There are other issues with the port but all in all it is a win. 

Back to the kidney numbers.  We need these to get back in line.  Today they were 1.9 last week 1.5.  That is a big jump.  The kidneys must be healthy enough to manage the Prograf post transplant.  If the numbers go above a certain threshold Laura will be removed from the list. If the hydration is not the issue and we see no improvement in the next day, we will move to other solutions.   We have had these issues in the past and with some changes and tweaks we have always been able to get it back in control.

With all that we were moved to ICU this evening.  At this point it is unlikely we will move out of ICU prior to the re-transplant.  Minus the restrictions for guests, this is a good move.  1 to 1 care for Laura 24/7.  All of her doctors, and there are lots, are on 10ICU.  After a bit of settling in it should be more comfortable for Laura. 

On to other commentary.  Thank you to the person/persons that sent the 10Long nurses station cookies. They loved it.  The team on 10 long is awesome.  We have had LOTS of nurses at different hospitals for different times.  At this point we are a known entity.  People go on vacation and we are still there when they return.  They are excited to see us but disappointed at the same time.  They are pulling for Laura and #teamlaura.They discourage alcohol on the floor so the cookies were a nice treat.  Thank you.

Sorry for typos. It is late and I am not going to proofread.  More to come.

Love and thanks to all.
The Zs

Out of the ICU

We have no idea what day it is or how long we have been in the hospital but we do know we are out of the ICU!

The reason we went into ICU was due to the extremely high blood gas issues Laura was dealing with.   In the beginning we thought the cause may be due to the decreased time time Laura was spending on the bipap. In the end, that seems to be the cause.  After a few days of tweaking, the beast of a machine, with the respiratory therapy team she was moved back to the floor.
The ICU team on 13 was AWESOME.  We are very lucky to be under the watchful eye of the best.

Every time we move to a different floor or have a change in the team we need to review what is going on, this includes a review of her meds. This is not a short process.  Laura is taking 40-50+ pills a day.  Her blood sugars continue to be all over the place for her insulin needs make that a very complex process as well. While I was there today three Endocrinologists came into the room to discuss her case.  There is probably a good joke there. Three Endocrinologists walk into a bar....   Anyway, managing her blood sugars while on 24/7 tube feed will continue to be a task as well as all of the other meds.

In order for Laura to go back onto the main floor (For clarity, main floor is not a normal floor in a hospital. There are 20 rooms or so and all the patients on the floor have either ALD (advanced lung disease) or a cardiac equivalent.  A picture of health) she is on the full face bipap.  Thus far this is going well but we are unsure how long she can go on this.  Once this runs out, we will have to go back to ICU and will be trached.  

As we are the eve of the midterm elections, you should go vote.   Below is Laura completing her ballot.  What's your excuse not to vote?

Thanks again for all of the notes and thoughts.  More to come.  Hopefully lungs are coming soon.

Love,
The Zs

Getting comfortable in ICU and some news

The team in ICU is great.  Laura feels more at ease with the extra attention and that can only help.

Today was a day to get acclimated.  Lots of bipap work today with the goal of understanding where her levels are and making sure they can control them.  Tomorrow will be more difficult.  

In order to control the gases they have to do more adjustments to the bipap as well as the equipment she wears.  She currently has a unit that does not cover her mouth. This helps her get over the claustrophobic feels she has while on the machine.  The negative to this set up is that the forced air can escape from her mouth.  This makes the set up less than optimal.  Tomorrow they will try other set ups that include full face masks.  This will also be more uncomfortable due to the feeding tube those goes up her nose.

It is important to figure this out because as her lungs continue to fail her need for support will only increase.  We hope that we receive the call soon and can bypass those steps.

On another note, KTVU wrote a follow up article on Laura.  We did not know the article ran last week.  You can read it here.

Cheers to all,
The Zs

More excitement

Sorry for the delayed post.  The days have gotten away from us.  

Today was not the best of days.  Laura woke up with some tightness in her chest and a more noticeable shortness of breath.  After it did not go away there was some concern that her lung may have collapsed but something was wrong.

After the alert went out we quickly had a team of 10+ on her.  UCSF is really amazing, the team showed up in force and worked to diagnose the issue. The chest x-ray showed nothing, which was good.  They did a blood gas measurement and that did show the issue.

As we have discussed in the past, due to the chronic rejection, her lungs cannot exhale enough.  To monitor this they measure her blood gases on a regular basis, which looks at the amount of CO2 in her blood.  A normal number for a healthy person is around 40-45.  Today Laura was at 78.  Last week she was in the high 60s.  This is a big jump in a short period.  The concern with an increase that significant is that the lungs are failing at a more significant rate. 

To remedy this they immediately put her back on bipap.  Bipap will force the air into the lungs and make the lungs expel the CO2.  There are limits to how long you can be on a bipap machine on the floor.  The limits differ from the floor and ICU. Due to her need for more time on the bipap she was moved to ICU today.

For the next 24/48 hours they will keep her in ICU with 1:1 monitoring. If her blood gas number can come down into a normal range while on manageable time on the bipap they will move her back to the floor.  What we really hope for is the nod on the transplant.

We have spent all of October in the hospital.  10 days in September and we are now on day 3 of November.  Laura has not been outside in 40+ days.  We know we are in the best of hands and the support has been awesome.  We cannot express how much the support from our tribe means.  As you can image everyday is a roller coaster of some kind and the thoughts, comments and prayers make a difference.  Thank you.

Hopefully we will have better news in the coming days.

Cheers and Love,

The Z's