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