TIME TO PULL THE RABBIT OUT OF THE HAT AND GET ON WITH THE RECOVERY PLAN  (Thanks to Joe's sister Donna for the rabbit)!!!

Today is New Lungs Day 23.  Last week, Vikki traded the big breathing tube for a tracheostomy. She still needs the respirator to help her breathe, but now we can all see her beautiful smiling face. She's not able to talk yet, but maybe soon.

Most of the news coming from the medical teams is good. The transplant surgeons are done with her and passed her care over to the pulmonary team. She moved from the surgical ICU to the medical ICU around the corner. We have a whole new group of nurses and aides to get to know. But its part of the normal progression for transplant recovery.

So what's going on now---something they call pressure support trials where they turn the respirator down to its lowest settings and let Vikki breathe totally on her own (the machine kicks in if she needs a bit of help). They increase the trial time as she does better and better. She is now up to 12 hours a day on her own. They keep the machine on overnight while she sleeps, and then she does another trial the next day.

And she is also seeing PT/OT/Rehab twice a day to start to work on rebuilding her muscles. For now, she is doing exercises in bed or in a chair. They have this really cool sling to help her move into a chair...sitting up is good for rehab. The next challenge will be standing...and then walking again. But she has a long way to go to get that strong.

The doctors are still working on a few issues...a new infection that has to be treated, probably from the breathing tube....and a periodic period of apnea where Vikki just does not breathe at all. This is a bit concerning, as it could indicate some neuro problem. Or maybe she's just tired and still needs to figure out how to make these new lungs work for her.

Stay tuned. The next milestone is putting a voice device in the trach so Vikki can talk....then getting her strong enough to stand...and hopefully moving out of the ICU...maybe in a couple of weeks.

Let's all hope there's nothing but good news from this point on.

September 21

Watching Dancing with the Stars tonight!!!

Balloons from Terry and Denis are still flying high.

GOING NOWHERE FAST!!!!!


It's been a week since the last update, and two weeks since surgery.


Unfortunately, this past week has been a frustrating period of little or no progress.  Vikki was not able to breathe independently. I got to the hospital on Wednesday of last week to find the staff in the midst of replacing the breathing tube and putting her back on the vent machine.  (Of course, no one called me to tell me she was having breathing problems).


She had to go back to a routine of daily pressure support trials (i.e., breathing with minimal assistance) trials to see if she could get strong enough to remove the vent and tube. The do the trial once or twice a day.  She has one good result and then one that is not so good.  So she is making no progress toward removal of the vent and tube. We are both getting frustrated. She cannot talk. They have to keep her in restraints so she won't pull out the tube. I never expected things to be this slow and difficult.


And the worst part of the whole experience is the medical treatment. She has two (maybe three) different medical teams responsible for her care....surgery, pulmonary and cardiology. The communication between the doctors is almost non-existent, and the story that I get from them changes from one team to the next and from one day to the next.  It almost seems like they have never done this before and have not yet figured out how to talk to each other and how to talk to patients and their family.


One day we hear the went ahead with the surgery because the lungs were such a good match. The next day we hear that the donor was a smoker, had mild pneumonia and had some other problem - but the lungs were still "good enough" and they didn't want to wait.  One day we hear that Vikki is progressing slowly because she was so weak going into the surgery and the next doctor tells us she is progressing slowly because the lungs themselves were not in the best condition. We have not sent the attending surgeon since he completed the surgery, so we get all of our information from a resident or fellow. The teams change every couple of days so there is no consistency.


On top of that, there is no coordination. The pulmonary docs say she needs to start physical therapy to rebuild her strength and conditioning. Then the PT department comes in to say they only work with patients in the ICU three days a week (how is she going to get stronger with that kind of rehab?)
I discuss this with the pulmonary docs and they "negotiate" a five-day a week schedule with therapy. So the therapists come in and spends about three minutes helping Vikki stand and sit on the bedside twice and then leaves. And we haven't seen a therapist again for 3 days. I guess they can promise anything, but they have no accountability to actually follow through on the plan.


Today, the poop really hit the fan around here. The pulmonary docs and the surgeons have been saying that they don't want to keep her on the breathing tube for more than two weeks (specifically using the term "dangerous" in talking about a longer period). The PA from surgery and the attending from pulmonary were in this morning to talk about a tracheostomy so they can give her breathing support through a hole in her neck, which allows her to breathe on her own more and eliminates the uncomfortable breathing tube and which would also allow her to talk. They indicated they plan to talk to thoracic surgery to get her on the schedule, hopefully as early as Wednesday (but we agreed they would push to schedule this for tomorrow since Vikki is so uncomfortable with the breathing tube and since I have to leave town early Thursday).  About an hour later, the thoracic surgery team comes in to check on her and to tell me they can't do the procedure for at least 5 days because she is on a blood thinner to guard against possible blood clots.  I totally lost it....this is a known fact that is in her medical chart and that everyone treating her knows about.  No one could explain why one group of doctors is talking about doing surgery tomorrow or the day after, knowing what medicine she is on, and the other doctors are saying we have to wait 5 days.  Now, they are arguing about how long it is safe to keep her on the breathing tube.


I cannot find any way to rationalize this absurd lack of coordination. These people have done this before....dozens of times. I have no idea why they cannot communicate and coordinate.  No wonder our healthcare system is so messed up....if this is typical of the lack of care coordination that goes on in a major medical center.


And the worst part of all of this is the effect it is having on Vikki.  She can't talk but she can hear all of this going on around her. She is frustrated. She wants to get the breathing tube out. And she knows we can't get a straight answer from anyone and the doctors can't even agree among themselves.


This too shall pass.  And we have to keep our eye on the prize and the ultimate goal.  She is getting better, slowly. And hopefully they will figure this out.


Stay tuned for more updates.  And hopefully for better news.

TODAY MARKS A VERY BIG MILESTONE....NEW LUNGS, DAY 7

The new lungs are working….they turned off the respirator today and removed the breathing tube….check out the photo and the big smile.

Next challenge will be getting her voice back and passing the “swallow test” so she can start eating.

 

Her fever is down, so hopefully the infection(s) are under control.

One more chest tube drain came out today….two more to go.

 

Vikki is still in the ICU unit.  We’ll see what the doctors say tomorrow about getting her into a regular room and back on a rehab schedule.

 

WHAT A DIFFERENCE 48 HOURS CAN MAKE!!!!!

Finally, a good day with some positive developments!!!!   This morning, Vikki stayed on the pressure test for breathing for about 6 hours now. She “passed” with flying colors…..breathing on her own with minimal support from the respirator……and her heart rate and blood pressure stayed in the normal range.   I am out of town, headed to a client meeting tomorrow morning.  I talked to the nurse before boarding my plane and learned Vikki was doing another pressure test and breathing well.  Once the doctors are pleased with her breathing during these tests, they will take her off the respirator and remove the breathing tube.

Then she will be able to talk (hopefully, although it may be difficult for a few days after they get the tube out) !!!!   And the recovery process can move on to a new phase.  This is like - - jump up and down and shout HOORAY!!!   Let’s all keep our fingers crossed for continued progress.

They removed one of the chest tubes today.  There are four of them that drain stuff from the chest cavity around her lungs.  That’s another sign of positive progress.  Hopefully, the rest will come out soon.  Once they get those out, the therapy folks can start to work on her.

She still has a couple of related issues that the docs are working on…..a fever probably caused by an infection, and a slightly irregular heartbeat….both of which seem treatable.  They have been chasing this infection for a couple of days. We know her new lungs came with some kind of infection and we also know the catheter she was using for her hypertension medication had developed an infection (It was removed a couple of days ago). They did another broncoscopy today to pull secretions out of her lungs.  They are doing cultures on everything, but the results take a few days. They have some antibiotics going now.  Her fever was done this afternoon.

Its about time for some good news!!!!   I  guess she woke up this morning and told herself “time to move on to the next step of recovery.”  And she’s doing it.  She can’t communicate except with head nods until the tube comes out, but you can see the smile in her facial expression.  Pretty soon, she’ll be writing these updates herself.

I think my sister summed it up when she wrote: 

It seems that every time we feel low, she pulls a rabbit out of her hat and restores our spirits.  We will keep watching for her "tricks".

She still has a big hill to climb.  She was just beginning to walk around (with help) before the surgery, and I am sure this will be a setback in her rehab.   No one is talking about timetables yet, but at least we can begin thinking about recovery. 

Oh...and one other thing for everyone who follows this blog and is also on Facebook and other social media. This information does NOT belong in the social media world.  Some people have posted full details including Vikki's full name, the surgery she had, and various other details out there for anyone and everyone to see.  This is a very private experience and this information is ONLY for the people that Vikki have selected to receive her messages.  Please respect our privacy and refrain from putting this information out for all the world to see on your social media pages.  Thank you.

September 11 Posted by Joe

For sure, its been once heck of a week….starting with the call for the transplant….then the waiting, waiting, waiting to confirm the match….then more waiting for the surgery to begin…..and then more waiting, waiting, waiting for the surgery to be completed.

 

Vikki has had her new lungs for 4 days now.  And it upsets me to say she is not making much progress toward recovery.  Its going to be a long, tough struggle….more than we ever expected.  I have been at the hospital daily…12 hours a day….there is a constant stream of doctors and others in and out of the room from more specialties than I can count.

 

Things aren’t bad….but they’re not what I would call good.  The new lungs came with an infection, and that has to be treated.  Vikki developed her own infection, which also has to be treated.  Her blood pressure is unusually high, and that has to be treated.   She has some kind of heart irregularity, and that has to be managed.  And then there’s the normal stuff for a transplant….pain management and anti-rejection drugs.  I have lost count of the number of tubes she has….some to get medicines into her body, and others to drain icky stuff out.  She had two broncoscopies this week to clear out her new lungs.  She has been to interventional radiology a couple of times ….  for IV insertion, for pain catheters and for a feeding tube.

 

She can’t breathe on her own yet.  This scares me, but the doctors are not alarmed.  They have tried several tests where they turn down the respirator and see if she can breathe independently.  Simply put – she flunked the tests.  Today she was able to go for 30 minutes, which was an improvement.  She was getting tired, struggling to breathe and running her blood pressure way way up….so they stopped the test.  She has to pass this test a couple of times before they will take breathing tube out.  The longer it takes, the more I worry.  But the doctors aren’t worried yet and I keep telling myself they know a lot more about this than I do.  When they start to worry, then I will REALLY worry.

 

I have to keep reminding myself she was really sick before the surgery.  The surgeon almost changed his mind about doing the surgery, but he thought the lungs were too good of a match and didn’t want to miss this opportunity to save her.

 

At this point, all we can do is wait….let the medical folks do their thing….and pray that each day will be better than the last.

Thanks to everyone for your support and kind words.

 

Miracles Keep Happening

Frustration envelopes me completely. It seems, no matter how hard I try, I"m not making any progress. My muscles just don't seem to get stronger. I do the exercises over and over to no avail.

Then, yesterday, on the way back from OT, my OT tech stops and tells me to try to walk from a spot in the hall to my room..maybe, 50 ft. away. I'm always up for a challenge even when frustrated from no gains. Surprisingly, I walked the total distance without my knee buckling.

This must have brought me more energy, because then when the PT Tech showed up  -- we walked 350 ft. without my knee buckling!

Today, I walked 600 ft. and Joe said I was almost walking like a normal person!

This is a big day for me - walking and being able to do the exercises after, I never would have thought such progress could be made overnight.

Miracles still do happen!