Friday, November 06, 2009Dear Son Update~Diagnosis: Swine Flu, Pneumonia, MRSAOn Monday, Dear Son (DS) tested positive for
Influenza A. As you may recall, Dear Son is at Big Academic Medical
Center and was being treated him for the flu and a viral pneumonia.
During that time, I met with the Section Chief of Infectious
Disease(SCID), who is an expert in unspecified fevers, and he was
confident that they had figured this out. While the blood cultures and
swine flu test were still pending and would take a few days, this is
what Dear Son was treated for. I didn't share the flu information when
I updated you earlier in the week, because at that time, while they
suspected the swine flu, I didn't have the test results back. I met
with the Section Chief of Infectious Disease and he had explained to me
that 88-90% of the patients there that tested positive for the
Influenza A, would test positive for the swine flu and that's exactly
what happened with Dear Son.
What
was problematic for me was that in early October, I spoke with Dear
Son's physicians with regards to getting the swine flu vaccine, along
with the seasonal flu vaccine and the pneumonia vaccine. Dear Son had a
pneumonia vaccine in 2002 and I had met with the Section Chief of
Pediatric Pulmonary in August for an office visit to determine if he
needed to get another pneumonia vaccine (Normally you need only one in
your lifetime but because DS has chronic lung issues, it was
recommended he get another one.). I wanted to know if I could get all
three vaccines done on the same day, Monday, October 26th, because DS
was off school and it's hard to get him around. Dad must go with on all
office visits because we don't have a wheelchair van and he has to lift
him. They had conversations to determine if he could get them all in
the same day, how many injection sites they needed to do and if they
would have the vaccines by then. We also needed to determine which type
of vaccine he needed to get (live or dead) and it was determined that
with DS's pulmonary issues, he could only get the injectible version
and not the nasal mist. It was set up and he was approved to get all
vaccines on that day.
When
we arrived on that day, they were out of the Swine Flu injectible
vaccine. Little did I know that this would be a huge problem for Dear
Son. On Saturday, October 31st is when his fever started. I
specifically asked the Section Chief of Infectious Diseases what the
incubation period is on the swine flu and was told 1-5 days. I asked
him where DS got the flu and he thought he most likely got it at
school. I also asked if DS would have gotten the swine flu vaccine on
Monday, the 26th, if he still would have gotten the swine flu. He said
that if DS got the vaccine, he probably would not have gotten the swine
flu. Please understand that it would have still be possible
for DS to get the swine flu with the vaccine, however he was saying it
most likely would have prevented it. I learned all of this information
earlier this week but didn't want to update the blog until I had the
actual test results that were positive for the swine flu and I got
those yesterday. He is also having conversations with those departments
to determine why the vaccine was promised and not delivered for someone
like DS. Typically, the city gets the vaccines, they go to the hospital
then are distributed to the departments and they allocate the vaccines
to the appropriate patients. In our case, they aren't certain what
happened and I should note that we came down just for the injections
and neurology clinic as not in session that day, another department
was.
In
addition, once Dear Son tested positive for Influenza A, they required
me as his primary caregiver, to start on Tamiflu and gave Dad a
prescription as well to help prevent the swine flu.
In
addition to the swine flu, Dear Son has a big infection in his right
lung. It is nearly all white on the x-ray. At this point, the blood
cultures haven't come back with a bacterial infection so it is still
considered a bad viral pneumonia.
Pediatric
ICU policy states that all patients must be tested for MRSA. As you are
aware, Dear Son tested positive for MRSA in 2006 and had two MRSA
penumonias and was vented at that time as well. Many of you read my
Mother's Day blog where I almost lost Dear Son on Mother's Day but the
blood transfusion saved his life. Dear Son tested positive for MRSA
this week as well. I asked the Section Chief of Pediatric Pulmonary,
who is DS doctor, if that meant the pneumonia was a MRSA pneumonia and
they can't say. What is does tell us is that he has a pneumonia and he
has MRSA which means that they need to treat him with antibiotics for
the worst case scenario. (As an FYI, typically with a MRSA pneumonia,
you have really high fevers, say 105 or so and because it's a bacterial
pneumonia, there are protocols for the length of time they will be on
antibiotics. For example, often Vancomycin, a powerful antibitoic will
have a ten day course.)
So
to update, Dear Son has the swine flu as his primary diagnosis and then
a bad pneumonia and MRSA on top of that. The swine flu can have a fever
component (If I recall the SC of ID said that less than 10% of patients
with the swine flu have a fever.) Dear Son remains on a ventilator.
On
Tuesday, Dear Son was started on the ventilator at 100% and by
Wednesday, his settings had decreased to 55% oxygen. A simple way to
evaluate what is going on is when the vent settings are going up, you
are getting worse and when they are going down, things are getting
better. Dear Son continued to have fevers on and off. They were able to
stabalize the blood pressure with norepinephrine and also stabalize
many things: glucose, sodium, potassium and magnesium. He remains on
the norepinephrine though to keep his blood pressure up.
On
Thursday morning they attempted to get a chest x-ray which required
Dear Son to lie on his back. Normally Dear Son can not manage his
secretions when he is well on his back and I told them that he could
not lie on his back for any time longer than necessary. They ended up
having him on his back some 20-25 minutes at which point I said I had
to turn him on his side. I could hear the secretions and while they can
suction him, I honestly can't stand that and would prefer to prevent
these kinds of things. For the record, I have a horribly weak stomach
and when he is on the ventilator, it is ungodly stressful for me and
for DS. The nurse thought she knew everything and was going on on how
Dear Son was doing just fine on his back, his oxygen saturations were
lovely, etc. I left the room to go to the washroom and came back and
she was totally white faced. Dear Son's had desatted and as a result
they had to turn the vent settings up from 55 to 100%, except that now
they had a problem because he wasn't getting enough oxygen even though
they were at 100%. There was nothing more they could do. She asked me
if it might be possible he was having a seizure since she couldn't get
his oxygen up and I said no but I swiped the magnet for his VNS anyway.
At this point the charge nurse was in the room and x-ray was standing
there wanting another chest x-ray because the x-ray was bad. It was now
5:45 a.m. I told them that they might want to hold off on the chest
x-ray until the Attending Doc comes in around 8 a.m. (Yes, they have
docs on call all the time and typically the AD is there around 6:30 or
so.) At that time, they could talk to her, DS would have had two hours
to stabalize and they would have a full staff there to help DS should
things get worse. I said they could still do a chest x-ray at that time
however since they couldn't get his oxygen up and the vent was at 100%,
there was no place to go. I was trying to avoid a crisis when everyone
wasn't there. They agreed.
It
took a few hours before DS stabalized. He remained at 100% for around
two hours or so. I explained to the nurse that while it may seem that
Dear Son can tolerate things, he really can't. I think she learned that
they need to listen to Mom:)
He
continued to have fevers throughout the day and when I left last night,
he was on 75% oxygen on the vent with a PEEP of 8. The plan was to try
and decrease the vent settings and increase the PEEP to help him out
more. (A PEEP is essentially where they have pressuried air that holds
the lung air pockets open after they exhale so they don't compress.
These are my words for the PEEP explanation.)
Dad
had to leave earlier this week after coming down with a fever. He got
sick after spending one day in the room. I left last night and have a
terrible sore throat and can't speak.
So
to summarize, Dear Son is at Big Academic Medical Center and has the
swine flu, a bad right lung pneumonia and MRSA. He is being treated
with Vancomysin and Zosyn as the antibiotics, Fentanyl for pain,
Tamiflu and norepineprine to stabalize his blood pressure. They
continue to treat his fevers with Tylenol and Motrin. They are giving
him chest PT every four hours and take blood gasses every four hours.
He has a central line, an arterial line and a foley for urine. He is
also having more seizures so they took all seizure labs yesterday. He
had a good night last night and the vent settings have been reduced to
50% oxygen.
They
expect the swine flu to last seven days and during that time, he will
be pretty sick. They will continue to treat him with the antibiotics
and the plan is to increase the PEEPs to try and get the vent settings
down.
I
spoke at length with Dear Son's Pediatric Neurologist, who is DS
primary doc. He has been his doc since he was ten weeks old. I asked
him if he thought Dear Son would live. He thinks that Dear Son will
live however he is not sure how easy it will be to get him off of the
ventilator. He explained that unlike other physicans, he spends a lot
of time in the ICU and knows these physicians well. He stated that for
those patients who have had the swine flu there, they have been very
sick for a good week or so. He is very confident of the ICU team in
terms of managing these types of issues. I also wanted to know if the
fact that Dear Son is so weak at baseline and has a progressive
neurological disease if that makes it harder. While it does make it
harder, he has other patients that are more severe than Dear Son and
have been in the ICU for other issues and the team has been able to
pull them through. While his words were comforting, I still do not feel
very good about this situation however it did help a lot. I pray that
he is correct.
I
do know however that getting him off of the ventilator will not be an
easy task and they have told me that they will probably need to get him
some support before he can breathe on his own. I have had conversations
with several of his physicians around this issue.
I
would also strongly recommend that if you have a child with chronic
health conditions like Dear Son, that they get the swine flu vaccine. I
asked the Section Chief of Infectious Diseases who is most likely to
get the swine flu and he said children with asthma and those with
chronic illnesses.
Thank
you for all of your prayers for Dear Son. It is very comforting to know
that everyone is praying and pull for Dear Son and for us. I am beside
myself with grief over this situation and it's killing me not being at
the hospital right now. I am going to try and get some rest.
I
do have pictures of Dear Son in the ICU, that I took with my new camera
however I'll try and get those downloaded later today. I wanted to get
the update done for you first.
I
also want to thank Laura, Angela and the people at the Make a Wish
Organization who have confirmed that they will re-schedule Dear Son's
Make a Wish Trip once he's better. In the meantime, we'll just hope
that he's on the mend for his 18th birthday next week.
Note:
Dear Son is seventeen years old and suffers from seizures, dystonia and
severe mental retardation as a result of a random mutation of the ARX
gene. You can read more about him in the Journal of Neurology by
clicking the link in my sidebar.
|
