This post written on Monday 5/25/15)
Wednesday
May 13th Danny was admitted to the hospital. He had been having bad
headaches for about a week and the diarrhea had worsened. He has had diarrhea
as a side effect of his anti-rejection meds since transplant, but it got much
worse over the last couple of days before the 13th. Danny was on his
way to work at the office in New Orleans and was going to go see the doctors in
New Orleans for a check-up since he hadn’t been feeling well. On his way there,
he vomited in the car and decided to go back home. He called me at work and
said he needed me to come home to help him. I called his nurse coordinator at
Ochsner to discuss his symptoms and she said he needed to be seen that day by
our family doctor. Unfortunately, our doctor was out of the office that day and
the man who takes call for him did not feel comfortable seeing Danny, given his
transplant history. He was directed to go straight to the ER. (these type of
symptoms…headache, nausea, vomiting can be symptoms of rejection). I really
don’t like to be extreme and going to the ER is an extreme thing to do. So, I
called his nurse coordinator to see if she thought it was necessary that he go
and she said that his symptoms are very concerning and that she agrees that he
needs to go. She told me to take him to the Ochsner in Baton Rouge because they
can easily share records and work together between Ochsner Transplant Facility
in NO and Ochsner in BR. We were in the ER for a long time and then it was
decided by the team in NO that he needed to be there for treatment. Danny was
transported via ambulance (I couldn’t drive him myself because of liability
issues for the hospital) to NO, where he has been now for 12 days.
The
doctors began the process of identifying the cause of the headaches, fevers,
diarrhea, and vomiting. They did and continue to do blood work, CT’s, MRIs, x-rays,
and then a spinal tap. The spinal tap revealed viral meningitis, which was a
big scare because then they had to determine the source/cause of that virus.
The connection between his case of West Nile in 2000 is not related to this
virus, even though they are similar viruses that attack the brain area.
Encephalitis (West Nile is a type of encephalitis) is swelling of the brain.
Meningitis (Danny currently has) is swelling of the fluid around the brain. The
doctors said that when he had the transplant, his body basically reset and
forgot that he had encephalitis before…therefore it is an odd coincidence.
The
spinal fluid also revealed a second virus in the brain area, but they still
have not identified the type. After several days of waiting for all test
results to come back, it seemed like Danny’s symptoms were worsening. His
fevers were spiking up to 103F, which is pretty scary. They did a second spinal
tap to see if he was really worsening. He was not…the results were the same.
At
some point, the infectious disease team, neurology, oncology, and heart
transplant began to think the symptoms were caused by the most recent
anti-rejection he was started on. Apparently in rare cases this medicine,
Rapamune, is hated by the patient’s body so much that it “wages an all out war”
according to the doctors. The result is that the Rapamune actually gives the
patient viral meningitis. That’s good news is that the solution is to take him
off Rapamune, and that’s pretty easy. The problem is that Danny needs to be on
anti-rejection meds and the list of drugs to choose from isn’t very long. They
are currently weaning him back on to a combination of previous ones he had.
They had some undesirable side effects, but certainly none as bad as viral
meningitis!
Sunday
and Monday night shift were an absolute nightmare with the staff. I’ll get back
to that story at the end of this post...
For
the first part of last week we were not seeing much improvement in his
symptoms. He still had pretty high fever spikes and constant diarrhea. The
infectious disease team did every test they knew to do to determine the cause
of the meningitis, however, everything was negative. That led them to the
conclusion that Rapamune is the cause. Another fairly common source of fevers
for patients with lengthy hospital stays is atelectasis or “sticky lungs”.
That’s when the bottom part of the lung collapses a little from lack of deep
breathing that comes with exertion. When the lower part of the lungs collapse,
they sort of stick together a little (hence the nickname “sticky lungs”) and
can cause a little shortness of breath as well as low-grade fevers. The concern
with that is it can develop into pneumonia. The fix for it is using the
incentive spirometer frequently to help open up the lungs all the way. (it
would be great if at this point his primary symptoms of headaches and fevers
could be caused by atelectasis and spinal taps, instead of still having
meningitis, which would mean that Rapamune was not the cause of the
meningitis!) Oncology doctors were following him also, and they believed early
on that Rapamune was the culprit. Neurology was following him to try to manage
the headaches. The question was: are the headaches still from the viral meningitis,
or could they now be from the two spinal taps since the Rapamune has started
leaving his body. The treatment for spinal tap headaches is massive amounts of
caffeine, so Danny has been drinking caffeine powder twice daily in addition to
all the Dr. Pepper he wants! It was the heart transplant team that took the
longest to convince and they have not been willing to send him home as long as
he was running fever. The latter part of last week and over this past weekend
Danny’s fevers have started to decrease in temperature, now usually only
reaching around 100-101…much better than 103! His headaches have lessened in
severity also.
Today
Danny has been really grumpy. He is just ready to go home and get back to life.
He has been trying to work from his bed, but Ochsner has a new firewall that is
blocking his access to things he needs. It won’t even allow me to access the
blog!! Danny was pretty clear with the infectious disease doctor that he was in
a bad mood about still being here and I think she made some things happen. The
plan was tentatively to do a biopsy tomorrow (Tuesday 5/26) to make sure there
is no rejection. The meningitis symptoms also look like rejection symptoms, so
they just want to cover all bases. I don’t think anyone really thinks he’s in rejection,
no blood work has pointed toward that so far, but the only way to be 100% sure
is to do a biopsy. These results also will help the transplant team make good
decisions on what amounts of each anti-rejection meds he needs to be on. Since
Danny has such strong reactions to anti-viral medicines, they don’t want to do
guesswork if they can avoid it. Better to get the medicines right the first
time and hopefully make it as easy on his system as possible. Apparently biopsy
results can give them that type of helpful information as well as showing signs
of rejection or none.
The
biopsy was done today. I think it happened today because Danny was so vocal
with the ID (infectious disease) doctor this morning about wanting to go home.
Anyway, results from the biopsy come back tomorrow. The day nurse told
tonight’s nurse that he might be able to be discharged tomorrow as long as the
biopsy results are okay. I know the transplant team said there was no way he is
going home with a fever, but at this point I think everything is on board with
the meningitis being caused by the Rapamune. If that’s the case, the fever
could last a few more weeks since Rapamune takes so long to fully exit the
body. Danny can deal with a low-grade fever at home! That’s what we hope they
think anyway!!
So
the prayer is this…good biopsy results, discharge tomorrow (Tuesday 5/26), no
more fevers, no more headaches!!
Here
is the account of the gossiping/bullying incident:
Sunday night late/early Monday morning
(5/17-5/18)
Beginning of night shift on Sunday (5/17) was
extremely loud. Danny’s room is directly across from the nurse’s station. It
sounded like the night shift staff was having a party outside his door
(Cheering, laughing really loudly, talking loudly). After a while, Danny pressed
the nurse call button and asked them to please be quiet. (He had been diagnosed
with viral meningitis and his headaches were horrible and he was also running
fever). The person who answered the phone was quiet for a moment and then said
“ok”. Through the door Danny and I heard her say in an ugly tone of voice “the
patient wants y’all to be quiet”. They laughed about it and did not change the
noise level. The other issue at that moment was the person who answered the
phone at the nurses’ desk didn’t press the button with her finger before
setting the phone into the cradle. In the patient’s room, it sounds like she is
slamming the phone down loudly and echoing through the speakers.
Many hours later, a PCT (patient care
technician…nurse’s aide) came in for a vitals check. She said his temperature
was 103.1. Danny asked her if she would let his nurse know and she said “yes”.
(protocol for a fever that high is the PCT immediately tells the nurse who
immediately comes in the room, usually with another nurse or the charge nurse
(CN). About 20 minutes passed and the nurse did not come in. So, Danny pressed
the nurse call button and asked to see his nurse. The person who answered said
“May I tell her why?” and Danny said “No, its personal”. He didn’t have a reason
to say that other than he was frustrated that he felt so badly, his nurse
hadn’t come yet, and he didn’t want to talk to the lady on the phone. He asked
me to look at the time and 25 minutes later, Danny decided to call the Code H
number, which is for Code Help…a paper in every hospital room with a number to
call if the patient feels his/her needs are not being effectively met. Danny
told the person on the phone he had 103 fever and hadn’t been able to get in
touch with his nurse and he wanted to know how to do that.
About 10-15 minutes later the charge nurse (call
her “D”) came in and wanted to understand why Danny called code H when she
hadn’t been contacted yet. (the appropriate chain of command would be nurse,
CN, then Code H). Danny said he had called for the nurse, she never came, he
didn’t feel good, and had 103 fever. She said, “I doubt your fever is that high
but let’s check”. He said, “wait, I’m confused, why would you doubt my fever?
Your PCT checked it and said that was the temp.” D said that some of the thermometers
the PCT’s use aren’t always accurate and that’s why the nurses come in to
verify the temps. Danny said “I don’t understand why a hospital has
thermometers on the floor that you are saying don’t work!” He was really upset
about that and wanted to know why if they knew it was broken why they didn’t
recheck it quicker instead of letting him lay there and worry about 103 fever
for 45 minutes. She said “sir, that’s why I’m in here right now, to double
check your temp”.
That’s
not true…she was in there at that time specifically because Danny had called
Code H and those people had the CN go see the patient.
Then their conversation went back to the noise
issue at the beginning of the shift somehow. Danny was telling her he was
frustrated at the lack of professionalism on this shift starting with the party
at the nurses station at the beginning of the shift, PCTs not reporting 103
fevers to the nurse, nurses not responding to a patient’s call, slamming down
the phone in his intercom, and then using broken equipment in a hospital. She
said “sir, I was the one who answered the phone when you complained about the noise
so I know about that complaint.” She said because they are short staffed, many
times she sits at the desk and answers the phones. So then Danny got more
irritated and said then obviously the problem on this shift is your lack of
leadership skills since you’re telling me you are the one sitting right there
at the desk taking all these calls and not doing anything about it. D just said
she was sorry he felt that way and took his temp again and said it was 101 and
that he didn’t have anything to worry about. She left shortly after that and by
this time it was time for me to leave to go back to BR for work.
I didn’t know there were continued problems until
I got back to the hospital the following night after work (Monday night). On my
way to New Orleans Danny had me stay on the phone with him and listen…not talk
at all, just listen. I had no idea what was going on and honestly was concerned
that his fever was high enough that he was delirious. When I got to his room
his nurse, “A”, was in the room with him. (that’s the same nurse he had Sunday
night). I met her in the hallway and asked if everything was okay because he
had been acting weird on the phone and I was concerned about possible delirium
with a high fever. She said she hadn’t noticed anything weird. Danny’s IV
wasn’t working anymore so “A” had to put in a new one. She tried 3 times, with
no success. She called another nurse in to try to start the IV and she gave 2
attempts with no success. At that point they called the charge nurse (different
one from the previous night whom Danny had conflict with…we will call her “C”),
“C” in to start the IV. She was successful the first time. While these nurses
were in the room, the talk was pleasant and I was chatting with them. I did not
sense any tension or conflict at all. After the IV was started and the 3 nurses
left, Danny said, “they did that on purpose. Those 2 nurses messed up on
purpose to try to hurt me. They hate me and they’re trying to hurt me. I can’t eat or drink the food they give me
because I don’t know if they’re spitting or peeing in it!” He had me check in
his pitcher of water to see if it looked okay, which it did. I told Danny he
had to be confused and there was just no was they hated him and tried to calm
him down. I finally told him that even if they did hate him, they wouldn’t hurt
his food or water because they wouldn’t risk their jobs for him. Overall, I
didn’t believe what he was telling me and really was concerned about his mental
health.
Then a PCT came in for a routine vitals check.
She was pretty quiet. As she was leaving Danny said “Ma’am, may I have some
fresh water and ice please?” she said “ok” but when she walked out and the door
was shut she said (because I heard her clearly) “He wants water now. He thinks
he gets a treat?” (in that really obnoxious high-pitched tone). I was lying on
the couch and sat up immediately and asked Danny if he heard that. He said,
“Yes, Tricia you heard exactly what she said. That’s what I’m trying to tell
you. They’ve been gossiping about me all night and I can’t take it anymore.” My
first reaction was to follow the PCT out into the hall and give her a piece of
my mind…but then I decided on another route. I waited in the hallway and when
the PCT returned with the ice water, I asked her if I could please speak to the
nurse. “A” met me in the hall and I started by saying “What’s going on with my
husband?” she said she didn’t know what I meant and so I told her what I had
heard the PCT say about the water. “A” acted shocked and horrified. She said
she had no idea what I was talking about or who would do anything like that. We
ended up going in the conference room while I explained the whole story to her,
crying of course. I told her how Danny had been scared to eat or drink that
night while I was gone because he was scared that the staff (nurses, PCTs…he
didn’t know who) were trying to hurt him by spitting or peeing in his drink.
When I got back to the hospital he was huddled in the bed, scared and just
about having an anxiety attack. I told her that Danny had been hearing people
gossip about him after the door was shut and were saying terrible things. I
said that I didn’t really even believe him until I heard it myself. She asked
me if we could get the charge nurse in there to help work it out and I said “what’s
really the point because she would just be another person to go back and laugh
at both of us now.” The nurse wanted me to believe that she wasn’t involved and
didn’t have any knowledge of any of it. I said I really wanted to believe her
because I wanted to believe the best in everyone, but this is really hard. We
used to feel like Ochsner was a second home and always feel safe and good when
we are here because the care Danny receives has always been amazing. But now
really what I want to do is take Danny and leave.
At some point the charge nurse came in, I was
grateful to see that it was not the same one Danny had the conflict with. I
explained the whole story to her again and she was truly horrified. By that
time, I finally believed the nurse wasn’t involved either and had no knowledge.
The end result is that I wanted to find a resolution and move forward. We
agreed my job would be to make Danny believe that he can eat and drink safely.
Her job is to get us back to a place where we feel safe at Ochsner and that it
feels like our second home again. She said she needed a couple of days to do
everything she needed to do on her end to fix the problem and that she would
keep in contact with me.
I haven’t heard from her again about the
situation, however, we have not seen the same PCT’s, nurses, or charge nurse.
The care Danny has received has been back to the high standard in which we are
accustomed. I would love to know how it has been handled, but I guess I don’t
need to as long as we don’t experience it again. Here’s the list Danny made
about what he heard on the two night shifts…
• Don’t
worry he doesn’t have a PCT tonight because I’m going to handle that
• On
first vital check, I told somebody I wasn’t feeling well
• They
left and told everyone to be quiet in jokingly manner and stated that I wasn’t
feeling good
• Some
background noises were strong and said they didn’t sign anything to be quiet.
He will have to get over it
• From
that period forward the night because worse than anyone could imagine
• When
somebody came in with Tylenol they said to take it for my fever and I would be
eligible for pain medicine in about 6 hours.
• She
then went to pour me a glass of water but I refused and opened a Boost as I was
afraid that this was all in her plan.
• Upon
leaving the room, somebody said wow we have a smart one in there as he not
drinking anything but Boost: Red boost at that. Background noise was negative
as some made comments that there was an ‘X’ in my chart and that they would
continue to deliver the red boost on my diet plans. (what is the deal with the red Boost? He is still receiving the red
Boosts on his trays and is drinking them…is red a problem for Danny for some
reason? Why are the mystery ladies making such a big deal about the type of
Boost?)
• Background
chatter seemed to be okay with that because I can only order one more time –
then what is he going to do? Somebody then said he hasn’t thought that far.
• There
was discussion about they could change my diet and they all agree that would be
a way to show him who is in charge.
• Somebody
said that all this was too much and they were done – gonna quit.
• They
were told to really think this through because this only a minor obstacle.
• Another
person said nope going to take care of this now. She then called her buddy at
Code Help and told them that all was a racist thing and to think nothing more
of it.
• Throughout
the evening remarks were made to people passing by stating that the pre-Madonna
was not asking for anything and wasn’t that amazing because I normally would.
NO water, not ice, nothing. Giggly about all that and everyone was in agreement
that I am complicated, racist, and tries to get his way.
• What
about when the wife gets here? I’m not worried about that; I can handle
her.
• Tricia
heard: Danny said to a PCT “Ma’am, may I have fresh water an ice please?” She
said ok and after the door shut she said “He wants water now. He thinks he gets
a treat?”
• That’s
when Tricia spoke to “A” about what was going on and the charge nurse,
“C”.
Danny believes that the main voice he heard in
the gossiping was that of the charge nurse, “D”. I (Tricia) was not at the
hospital for the majority of the incident and the only thing I heard first hand
was about the water being a treat…and a PCT said that. I don’t know if “D” was
in earshot or not. I would like to
believe that the charge nurse that night had no knowledge or involvement. I would prefer to believe that it was only
the PCT’s involved.
We want to know how the situation has been
handled thus far and what assurances there are that this won’t happen in the
future to us or any other patient. We are not in the least bit racist, and have
not ever treated anyone at Ochsner poorly or with disrespect in any way. I
assume that when Danny called Code Help that night, it upset some people and
the gossiping/bullying toward him was the backlash. In retrospect, Danny
definitely should have asked to speak to the charge nurse and tried to solve
his problems before calling Code H, but he didn’t. Regardless, he should not
have been talked about that way and made to feel unsafe.
This evening I spoke to the charge nurse who
assured me she would handle the situation. She feels like she has handled it
and though I could tell she didn’t feel comfortable giving me specifics, she
did say that some people were written up. I told her that since I had talked
with her the staff has been amazing and back to the high standards we had come
to know. At her request, I will give her a copy of this written account of the
incident, but hopefully it has all been resolved and will not happen again to
any patient!
Some people have asked if we still need monetary gifts. Yes! Danny's medical expenses are ongoing and will be for the rest of his life. Danny and I believe that the Lord is our provider. He uses jobs and traditional sources many times to provide the money we need. However, sometimes the Lord uses gifts from people. If you feel led to donate money, I can tell you it is a blessing and and answer to prayers, and will be used for medical purposes.
Here's how to give money:
Go to http://www.paypal.com
Click on "send" and then follow the prompts, You will need to enter your email & password (you must create a paypal account) and then our email which is: helpdannysauer@gmail.com
You can also send money to our address:
Daniel and Tricia Sauer
10901 Grace Lane
Baton Rouge, LA 70817
God Bless You! Thanks for reading and for praying for us.
~T
Some people have asked if we still need monetary gifts. Yes! Danny's medical expenses are ongoing and will be for the rest of his life. Danny and I believe that the Lord is our provider. He uses jobs and traditional sources many times to provide the money we need. However, sometimes the Lord uses gifts from people. If you feel led to donate money, I can tell you it is a blessing and and answer to prayers, and will be used for medical purposes.
Here's how to give money:
Go to http://www.paypal.com
Click on "send" and then follow the prompts, You will need to enter your email & password (you must create a paypal account) and then our email which is: helpdannysauer@gmail.com
You can also send money to our address:
Daniel and Tricia Sauer
10901 Grace Lane
Baton Rouge, LA 70817
God Bless You! Thanks for reading and for praying for us.
~T