Saturday 5/3
Cami has made positive steps over the
last few days. In particular, she has been weaned off of
her blood pressure medicines, and the pneumatosis in her
intestine continues to trend positive (less air
bubbles). With blood pressures stabilizing, the docs may
adjust the dialysis so we can see just what her kidneys can
do. We are still rooting for pee and poop as she is
still not doing much of either. But she did have another
spa day thanks to nurses Stefanie and Angie. She had her
hair done along with a mani and pedi. She looked
beautiful for her Aunt Diane who watched her on Friday as
Mandi, Jules, Carol, & I were given tickets to the
circus. Admittedly we get kinda creeped out by clowns,
but it was a very good show and we even got a ride on Chaney
the elephant.
So let’s keep praying Cam continues to
take baby steps in the right direction and continue to amaze
and inspire us all (and now the docs in
STL).
Monday 4/28
The girls came out with Karen and we had
a wonderful visit. With a surprise visit (only because we did
not see her email from Friday) Aunt Kelly came out on Sunday
so we were able to extend their visit until Tuesday. So they
will leave tomorrow at With Kelly at 3PM. It’ll be a tough
goodbye for all.
But…they got to see Cam, and even while
intubated, she woke up enough to say hi and wave. As the
breathing tube is rather uncomfortable we addressed the
sedation quickly and she went back to sleep peacefully. During
their stay we went to the top of the Arch, and visited the
City Museum (not your typical museum – more of a jungle gym on
steroids). Both places were a blast! Of course shopping and
dining out were on the agenda as well. We can’t wait until
they get to come back.
As far as Cami…she is still having some
tough days. She is still on dialysis but now, a suspected
infection in her intestine has made her belly very distended.
Added pressures in her abdomen now are affecting her blood
pressure, lungs, and everything else north and south of her
belly. So our new goal is to address this belly obstruction in
hopes that will make some of the resulting complications go
away. The Sr Fellow Doc this morning said, “Cami must not have
read the rule book, and if she did, she’s not following them”.
We thought that was cute. Once again we hope to have
identified the enemy and will go after it. So we’ll keep
fighting and the doc’s and nurses will keep working!
Special love
and thanks to Karen Ewing and Aunt Kelly who made our great
visit with Mandi and Julia possible. Sorry, got to go
play with my kids…until the next blog
God Bless
Thursday 4/24
My apologies...I had blogged yesterday
but will confess to operator error as it never got to Michelle
Zurcher who kindly acts as our webmaster.
It has been a rough week. Sorry to
say Cam has had a few setbacks. Her kidney enzymes had been
creeping up which means they weren't functioning properly, so
she was not able to remove the appropriate amount
of fluids...thus her lungs became wet...thus she had to
be re-intubated on Tuesday evening. Over the first few hours
of intubation we noticed her heart was showing some arrhythmia
(her sinus node was not in sync - don't really exactly
what that means but it was happening). But we still
had to watch to see if the kidneys were going to start
functioning...which they didn't...thus we started dialysis.
All the while her liver enzymes were elevated as well as her
white blood count. To sum it up there was a lot of bad stuff
going on.
It's Thursday morning and we will
continue to work thru these challenges. But I can say the
dialysis has helped to get a number of the enzymes trending
back in the right direction, and has helped her electrolytes
which has corrected the heart arrhythmia. It will be
over the next few days that we will learn if her kidneys can
bounce back and get back to normal. The liver is
something that will hopefully trend better but we are
told that is a slower process. We certainly need the
positives of Thursday to continue.
Her sisters are coming out tonight thru
Sunday with our dear friend Karen Ewing. So we
anticipate having a nice visit and Cam to continue to fight.
She is still listed but obviously has some
hurdles to conquer in order to be eligible to receive
organs. Please pray her kidneys and liver bounce back as their
dysfunction can impede our path to transplant.
Sorry I do not have better news but
we still very much have HOPE and CAM POWER.
Thanks and love to you all!!
Sunday, April
20
The weekend brought little changes. Cam
continues to stay the course. She had a couple nice periods
off the mask over the weekend. We are not going to push her so
the progress will be slow but hopefully steady. This week will
bring monitoring her blood gases and cultures.
We'd like to send out a couple special
thanks....to Michelle Craig (a co-worker) who came out to St
Louis for work, but was kind enough to sit with Cam so Carol
and I could grab a quick bite together at Applebee's (for the
1st time since getting to STL)....and to our family and
friends in CA who held a dinner, dance, and auction to benefit
us. The event was a huge success and they exceeded their own
expectations. Once again the support means more than you know.
We humbly send back our love to all of
you for checking in and we will be in touch in the next couple
of days.
HAPPY BIRTHDAY
CAM!!!
We have
received so many calls, notes, packages and emails wishing Cam
a Happy Day! Thanks for all of the gifts, prayers, and
well wishes. But a special thanks go out to the
Transplant Team who held their weekly Thursday meeting and
decided that Cam is officially listed as a candidate as of
TODAY. She will continue to have to work through the
infection issues mentioned below, but the team sees no reason
to delay the decision to have her begin ‘banking some time’ on
the UNOS list (United Network for Organ Sharing).
In
addition, the additional oxygen support she needed as she
fought these recent infections has been slowly coming
down. She’s getting back on track!
In fairness,
she wasn’t a very happy birthday girl…being in the hospital
and away from home. Her best birthdays are yet to come!
We look forward to celebrating those with all of you.
This was
a big day for Cami and everyone rooting for her.
Thank you for all of your prayers and support!
Tuesday 4/15
Well, we met with the transplant team…
And we still need to work thru a few
things to be officially listed. That may happen over the next
few days. However, based on the infections we are dealing
with, she would be listed as an inactive candidate. Once the
docs feel confident the infections are addressed, she then
would move onto the active list and the wait begins.
Unfortunately the infections are ones that could take a while
to clear up (speculation is no less than 2-6 weeks).
We’re taking from that meeting the half
full approach…there will be hurdles (like we didn’t know that)
but there are no walls in front of us. We will need to use the
patience God has given us and the support and prayers of
everyone rooting her on.
Thanks for checking, sorry we don’t have
more definitive news, but we’ll keep you posted.
Sunday 4/13
Well...the good news is she has continued
her successful trials off of the mask and the cultures for the
fungal infection are negative to date. But...the bad news is
she has developed a temperature over the weekend...which means
we have another 'infection' to deal with. Today we have
started a course of 3 broad spectrum antibiotics...which
hopefully will quickly address the bug in question. Admittedly
and understandably with the temperature, Cami has become less
energetic and pretty bummed out. But once the temp breaks
she'll get back to her old fightin' self...giving the docs a
run for their money and doing the arts and crafts she enjoys.
We still expect to meet with the
transplant team in the next couple of days...we'll keep you
posted on those conversations.
Other than that it's back to work for me
tomorrow (remotely from STL), which means Carol will be
managing Cam's bedside during the days and I will be with her
over night. Rest assured one or both of us will always be
within a hugs reach. Take care and thanks!
Thursday 4/10
Cami has significantly increased her
trials times all week. As mentioned Monday, we completed 2
trials at 30 minutes each...each day we have successfully
taken longer breaks off the bi-pap mask...today we have
already completed our first trial of 3 HOURS...and we're going
to try to get a second 3 hour trial done a bit later.
The fungal infection is still a
concern...but she received the last dose of that antibiotic on
Tuesday. Now we wait and look for negative blood cultures
through the weekend (FYI- negative so far).
The evaluation process is in full swing.
As we understand it, Dr Sweet and members of his team will
meet with us the 1st part of next week to let us know if she
can be officially listed as a transplant candidate. We were
hoping to know this week but I think they want to see a few
more blood cultures come back.
Carol and I have secured a room at the
Ronald McDonald House. It's about 8 blocks away and they have
a shuttle, but we are still trying to work out the timing and
logistics. I was bummed to find out they really didn't serve
Big Mac's and Filet-O-Fish. But having somewhere to rest my
head outweighs my desire for fast food!
The best part of the week has been
spending hours at a time looking at Cami's face wearing only a
nasal cannula. It's the quality time we've been waiting more
than two months for. She had her hair washed on Tuesday and
wants another 'spa' day today. We will have some pictures
posted soon.
Thanks for checking in and take care.
Monday 3/7 - First of all, a
special special thanks to nurses Mary and Marina for their
care throughout, but especially the last few days of our stay
at JH - without them, I’m not sure we’d be blogging from
STL!!
Our goal for Sat was met…2 sprints at 30
minutes each (sprints are time off the pressurized air mask…in
STL they are referred to trials), and lots of poop (Cam, I’m
sorry if this embarrasses you when you end up reading it). Her
energy and alertness has improved allowing for more fun
activities like coloring and painting.!
On Sunday she
successfully was able to complete 2 trials of 1 hour
each…while on nasal canula’s only! Great progress and good
work by Cam. We did more arts and crafts as well. Worked with
the Occupational and Physical Therapists (OT/PT). She been
busy!
So far today, we have already completed a
1 ½ trial, brushed her hair out, then did some painting, and
played Guess Who with the OT. She has a 2:00 play date with
Becky our childlife specialist. And we’ll do another trial of
90 minutes.!
This will be a big week as all the teams
will confer to determine if she is indeed officially, a
transplant candidate. Other clinical notes…some recent liver
dysfunction is trending back in the right direction, and her
fungal antibiotic course ends on Tuesday…so we pray cultures
remain negative.!
Thanks for checking in. We’ll keep you
posted. Love and thanks go out to all!!
Sat 4/5 – its been a whirl
wind 48 hours. Carol got here yesterday safe and
sound. Once again, a special thanks to Kim Brannan, my
friend and colleague, who shuttled each of us from the airport
to the hospital!
The conversations, consults,
and exams have begun. While we have been spoiled by our
caregivers at Hopkins, the medical teams and staff hear have
been very impressive, efficient, and caring. So ever the
next week we will learn more about the evaluation
process. The medical complex here is massive (Children's
Hospital, Barnes-Jewish, Washington U School of Medicine, St
Louis College of Pharmacy and more) – 25,000 person
campus. It will take a while to get the lay of the
land.
The little lady had a
big day yesterday in getting a pic line, having her femoral
line removed, getting respiratory therapy…they’re working her
hard. But as usual, she stepped up to the plate and had
enough energy left to do some coloring with Mom before she
fell asleep. Today’s goals…a sprint off bi-pap and
POOP. Her tummy has been crampy so she needs to
‘evacuate’, as the say.
Friday, 4/4
WOW!!! BJ and Cami are safely in St
Louis, WHEW! I can exhale (only for a moment) I am flying
today after hugging Amanda and Julia tightly and telling them
everything will be alright, that there are many, many people
are here for them and crying is okay.
A special thanks throughout these very
difficult 2 months and 3 days in Johns Hopkins Pediatric
Intensive Care Unit and Home: My Mom, who gave me my strength
and nourishment, took my crabbiness, and did my laundry
without complaining, I thank you!! Aunt Debbi and Karen Ewing
who came up to the hospital to relieve BJ or I so we could
spend some time at home with Amanda and Julia and maybe get
some sleep. Without you three we wouldn't be standing.
To the PICU team, if I tried to name you
all I would miss someone, but I am going to try: Any family
that stays as long as the Diamonds did, knows everyone, Dr
Jamie Schwartz, looks too young to be a doctor, thanks! Dr
Kristin Nelson, beautiful overachiever, always had a smile on
her face, Dr Chris Watson, took Cami on having no Idea what he
was in for, I think Cami taught Chris to never give up hope
because kids do amazing things!!! Dr Harris, love you, Dr
Nichols - I told you it was the old blood clot in the right
atrium :) And the Nurses: the best team I have ever come
across, and we have been in need a alot of nurses: Renee,
Aubry, Erika, Eva, Megan S., (I think the music is playing and
they are asking me to wrap it up - no way) Maureen, Dawn,
Missy, and as you that you are our scarecrow, Megan Quick,
never we know better, and I promise to not let up on my
questions - you know me, I kept you all on your toes, I will
do the same in St Louis!!! For all of you that I missed, I did
appreciate you and thank you so much.
please keep in touch, there is a contact
button on the home page that you can email us, even Cami gets
her own email.
Campower!!!
Thurs 4/3 (by Guest Blogger Megan Quick -
Cami's Nurse). See the pictures of the trip.
Hey guys, Since you weren't there, I
wanted to update you on Cam's Transport which went absolutely
perfect.
As you know we headed out at 8:30 with a
quick goodbye to mom and dad. Cam was brave, but she knew I
had her back. Lifestar (the company that I usually transport
with) picked us up. Our paramedic, Dan, was very taken by Cami
and all that she has been through and is anxious to follow her
progress. Charlie (EMT) also adored her, but who can blame
them.
We headed out to BWI where we were got a
text from BJ saying that he was on the flight (which made Cami
VERY happy). After a quick call to mom to say she loved her,
she was off.
Cami has become very observant of the
time, so I decided very quickly that she had to wear the
watch. Which we watched times. We knew that daddy was going to
land at 11:30, so we counted down the time till then. Then we
talked to the pilot and found out how long it would take us
(the whole trip took 2 hours and 15 minutes.) So we counted
down to that. Julia and Mandi's animals were close by the
whole time, although Cami gave them to me and Chris to hold
for a bit (always sharing the love.) Cami didn't want to sleep
through the flight (she was anxious to keep an eye on the
watch). She held my hands a couple times, but she was a brave
little girl. I even got a few smiles. All that preparation
paid off. Her oxygen saturations stayed about 95%. Once again,
Cam stepping up to the plate. Once we landed there was another
ambulance to pick us up. We called Daddy and Cami was happy to
hear his voice. But then the watch-watching was much more to
the minute. Cami wanted to know the exact time it would take
us and watched closely.
We ended up in St. Louis (very nice
hospital and as you know Cam has her own room with space.)
This was the first time we started to see the tears. Cami was
looking for daddy. The nurses hadn't told me that daddy was
waiting in the lobby, but once we found out he was there, I
said to bring him on in. It was a happy reunion.
I could not have asked for a more perfect
transport or team. All our preparation paid off and kept Cami
calm. And of course, she never ceases to amaze me.
Cami did say that we could get together
after she gets her lungs. And I told her that Daddy and I
would be having some good old football fun when the Eagles
play the Ravens (which I might add we are going to beat you
Bert.)
Give Cami hugs for me (yes, thats plural)
over the next... well however long it takes you to come back
home.
Love, Quick!
Weds 4/2
As surreal as it is to be typing
this...we are being transported to STL tomorrow morning. Thank
you for all of your prayers, positive thoughts, encouragement,
donations, and or anything else thrown our way. This is a HUGE
step towards getting Cami the cure she needs to lead a
'normal' life. I say 'normal' to illustrate how incredibly
tough this kid is and how hard she has fought to survive. The
last few days a blog was not written purposely because she had
to 'pass' a few endurance tests...on regular air pressures and
on the travel bi-pap machine. While challenged, she
passed...so we're off to STL.
Other big news...there was a chance she
had a fungal infection in heart (REAL BAD), but today we
learned it was a calcified blood clot from years ago (how's
that for med lingo). This is good news as we would not have to
deal with a fungal process as previously described.
From here the road gets windier... I will
do my best to communicate the process and progress. But rest
assured, with her strength and determination, your love,
prayers, and support, and the Lords blessings, we'll be back
home together and stronger than ever.
Take Care... talk to you from STL!!
Sunday – 3/30
Cam’s weekend went pretty well. She
managed a couple of successful sprints. Enjoyed visits from
her sisters, Aunt Debbie, and SuZu. She has become more
interactive and awake. Which is a catch 22…it’s great to see
her alert and communicative…but unfortunately she realizes
that she is stuck in a hospital bed. While we know this is a
marathon…she’s already anxious for this ordeal to be over. But
as hard as it is for us to get little rest and see her become
sad and frustrated…we wouldn’t have it any other way!
The next few days will be interesting as
JH speaks to St Louis. They will discuss her lung status as
well as the fungal infection. So let’s hope for the best.
These folks are very smart and we trust the decisions made
will be the right ones for Cam. We believe, HOPE, and pray the
question at the end of the day is WHEN, not if we are going to
St Louis.
No matter what, her fight and strength
continue to amaze and inspire us all! She has made great
progress and the team in JH PICU are and should be proud of
what they and Cami have been able to accomplish.
Thanks to all of you who have used our
message feature to send your best wishes. We now can read your
messages right to Cami now that she is awake.
And a special thanks to Tom and Andrea
Scheidt who attended a Ravens Super Bowl reunion function and
got some great pictures. They are on the Cam Power page of the
website! Andrea said the guys were great and gladly ready to
join the Cam Power Team. I’m proud to be a Ravens fan!
Thursday 3/27
Cam continues to do well with the bi-pap.
In fact she sprinted (just air – no pressures) for 30 minutes
today. We will make the docs take it slow because when we did
sprints on the ill-fated extubation a few weeks ago, we think
we might have worn her out too fast. The best part is, she did
this while sitting in Carol’s lap for the 1st time in 2 months
(picture posting is forthcoming)!
As far as the fungal infection…we are
still dealing with this. We want to get to the point where her
daily blood cultures have grown negative (no evidence of
fungal) for 3-5 days in a row. She has not had a fever since
the weekend, but we did see positive cultures grown from
Monday 3/24. While she is on medication to address this, we
understand these can be slow growing and the process can take
a while. The only thing definite I can tell you is that it’s a
wait to see how this plays out. The shame of it is…is that
without the infection, we’d be making plans to get to St
Louis.
Tues 3/25
Please forgive the delay in getting this
update blogged. The big news is that Cami was extubated on
Sunday at 9PM. It’s been about 48 hours and she has held her
own. Due to the setback after 36 hours last time, we weren’t
going to proclaim success too early or too confidently. The
only thing worse then not getting the prize (in this case a
successful extubation), is to get it and have it taken away.
Well at this point we are very proud of her and she is
tolerating a nasal bi-pap mask pretty well.
That said, I believe sharing the events
of the weekend will give you some perspective of trials and
tribulations we endured to get where we are
today…
Thursday PM – Cami is doing well enough
Dr. Hunt articulates the plan to continue the weaning and look
to extubate on Saturday.
Friday – Cami is becoming agitated as
meds are weaned off and she gets a fever, which puts the
process of ‘precautions’ into action where we now test her
blood for RSV and Flu and we have to where the gowns, masks,
and gloves when within 3 ft of her for the next 7
days.
Side note – During the course of the week
Cami had been and continued to lose her ‘line’s (a port set up
in a vein or artery that blood or medicine can be delivered)
Her poor blood vessels have taken a beating of these 7+
weeks.
Saturday – Fevers continue. Lost two more
lines. BUT we had planned to move forward the extubation in
the afternoon after giving her a blood transfusion as she was
on the low end of normal and we wouldn’t want to transfuse
after pulling the tube. So we used really the only line we had
left which was in her left shoulder. Within the 1st 20
minutes, ‘luckily’ we noticed a bruise like mark at the top of
her chest…the line had blown! This was a huge setback. So a
femoral line (a port coming from an artery in the groin area)
was implanted. BUT, yeast cultures grew from Friday’s blood
tests…NO EXTUBATION.
Sunday – Happy Easter and Grammy’s
birthday. Her fevers continue but as the docs conferred
throughout the day and justified that her lungs are as ready
as they’ll be - so let’s get the tube out. At 9PM we had the
tube out and she was successfully on a bi-pap mask (face mask
that uses pressures to force air in and out of the lungs). The
bi-pap is very uncomfortable so Cami was up for most of the
night. But at 5AM Monday morning, she began experiencing
severe abdominal pain so no one really knew where this was
going. But quickly we changed her mask from full face to
nasal, and in doing so we were able to relieve some of the air
pressures being sent into her stomach. It was a very anxious
time.
Monday – She is doing pretty well on the
bi-pap mask! No more fevers! But…the bruised area from botched
blood transfusion had become infected with cellulitis (it
looked like her entire upper chest had a terrible sun burn.
While an antibiotic was started, we used a topical ointment to
relieve some of the discomfort. And due to the yeast results
from the weekend, through a series of tests they looked for
yeast in her eyes, kidneys, and heart. At the end of the day,
everyone was concerned where this infection might live and
based on that what it could do to her situation and possible
lung transplant.
Tuesday – Through the help of Chris
McNelly, an neighboring patient’s Respiratory Therapist, he
recommended and sought out a newer, and smaller nasal bi-pap
mask which throughout the day helped Cami’s lungs a great deal
and her numbers showed it…Thank you Chris!! At this point we
will continue to support the process of getting Cami to the
best possible respiratory condition. Unfortunately it’s a wait
and see thing with the fungal infection. The results of which
will dictate how we treat it and move onto the next step in
fixing Cami.
Sorry for the long windedness..(my
friends call me windy), but these words don’t even do justice
to the stress, anxiety, exhaustion, fear, and exhilaration
that we felt these past few days. I truly hope you were able
to enjoy your Easter weekend with friends, family, or one
another. PLEASE don’t take it for granted.
Oh, and sorry to Megan Quick who I willed
to work on Easter. She was on call, but I told her I wished
she’d get called in...well she did get called in – took great
care of Cami and played a big roll in getting her ready for
extubation that night (so I’m not really sorry!)
Take Care and say a prayer this infection
is already on its way out and/or one that is readily
treatable!!
Friday 3/21
Well it’s Friday of steroid week and the
docs have been encouraged by small advances. But as our story
goes, she got a temperature this morning…so Carol’s and my
blood pressure are up a bit. But the progress made on her
lungs is still apparent and we are looking to keep moving in
that direction.
So many people have and continue to
support us…and we can’t tell you how much each and every
prayer, thought, and donation (food, money, gas cards, etc)
have meant. Please forgive us for not naming everyone who has
helped us…I’d be remiss if left anyone out. Everyone and
everything are so very much appreciated.
But I do have give a shout out… Our love
and thanks go out to Sherry McSweegan and the entire staff of
Crofton Woods Elementary who over the last 6 weeks have
brought us a complete dinner several times a week. The food
has been delicious, abundant, and a blessing. It has taken so
much pressure off making sure our family has the nutrition it
needs to maintain our strength and stamina. I only wish Cami
could have enjoyed it as much as we did…but don’t think for a
second Cam doesn’t appreciate what was done! We plan on having
her thank each and every one of you at CWS when she returns to
school.
We receive daily thoughts from Joel
Osteen’s Ministry out of Houston TX. We enjoy his teachings,
where he combines messages of faith and positive thought. As
many of you know, our mantra has been ‘HOPE’. It has helped us
get through this and many of the hurdles the last few years.
But yesterday, Joel’s message REALLY hit home. His message was
centered around Psalm 62:5 which speaks of hope. So I
formatted and printed Joel’s daily message and it’s sitting on
Cam’s bed. But one part jumped out to us and I wanted to share
it with all of you… The Bible says that faith gives substance
to things hoped for. In other words, your hope gives your
faith something to work
toward.
That pretty much summed it up for us.
Check out some of Joel’s stuff, he’s a pretty neat guy! Happy
Good Friday…God Bless Everyone
.
Tuesday- 3/18
Cam got her 1st dose of
mega-steroids last night at 8 PM…(eat your heart out Barry!).
While there will be no immediate results, but we hope to see
what effect they’ll have by weeks end. But at this point there
were no negative reactions. She’ll get her next dose tonight
at the same time. We’ll keep you posted!!.
Sun - 3/16
So far nothing has grown from
the bronchoscopy…which is good. We are hoping that stays
the case and that we can move onto the high dose steroids
soon. Her blood gases and sats have remained pretty
strong. We are still trying to wean meds so making her
comfortable is another goal. We just want to coast until
we can see if the steroids help us get to the next stepping
stone.
We had the pleasure of a visit
from one of my best friends Brian Martucci and his beautiful
and sweet girlfriend Crystal. It was such a shock to see
him I could’ve fainted (wink wink). It was a great visit
and I appreciated them coming up.
Today we expect Grammy and
Aunt Betty to come in for a visit as well as her cousins
Danielle and Will.
This week brought its share of
drama…steps forward, back, and sideways. But through it
all Cami has fought back enough to stabilize and give us hope
for plans to move forward. I pray the upcoming week
brings success and continued progress.
Thanks for checking in!
3/14 – Today it’s 6 weeks and
counting….
Thursday was an interesting and anxious
day (aren’t they all!!). Weds’s CAT scan came back and showed
that her lung’s have worsened over the last year. Let me
interject…that was no surprise to us, in fact we expected
that…hence we’re moving toward a lung transplant. BUT, the
radiologists suggested some of the affected areas could be
interpreted as a possible fungal infection. So, through a
number of conversations we decided to have a bonchoscopy done
where they flush her lungs with saline and test that backwash
for infection. With her condition, there was a worry as to how
she might do with that procedure – not wanting to send her
back to higher settings. The other concern is the possible
fungal infection which might require a particular antibiotic
that affects the kidneys. The broch was done in late afternoon
and she handled it well! This will hopefully tell us what
infection, if any, may be in there…treat it & clear
it.
The plan then would to be to move onto a
course of high dose steroids. Her lungs have consistently
responded to steroid treatment (it has successfully reduced
inflammation in the past). The steroids may get us closer to
getting her extubated.
She has not had a fever since the ONE
Weds afternoon. So it’s now a wait and see what comes back
from the bronch cultures which will take a few
days.
I hope I am doing justice to her story of
stamina, strength, and perseverance. She continues to amaze
and inspire all who know her (doc’s included). CAM POWER!!
Weds 3/12 – The road will be bumpy…
We were cooking with gas there for about
4 or 5 days…making enough progress to give the docs hope to
extubate and get us to St Louis as early as next week.
Well, the best intentions blah blah blah…
Cam had a subtle set-back in that she needed a bit more vent
support on Tuesday. So the doc’s plan on getting a CAT scan
today, and in the coming days get a better feel for her
baseline lung function. When we know that, we’ll know better
when, where, and how the lung transplant will play out.
I’m not going to lie…this was a punch in
the gut. The planning and conversations with St. Louis were
real and fairly immediate. Now things are on hold a bit and
time will tell. One thing is for sure, she’ll have good days
and bad…but we know she’ll keep fighting and make amazing
comebacks.
Keep praying and wear that CAM POWER
proudly to help us get back on track.
Sat 3/8 – The last few days have brought
continued progress. To the extent we are hoping for extubation
early next week. The vent weans have been met with good gases
so we keep going in the right direction slowly but surely. A
GREAT couple items to note…
On Friday Dr Mogayzel confirmed St Louis
has reviewed her file and has invited us out for a transplant
consult. Next steps…St Louis needs to confirm insurance
coverage and Cami needs to get closer to baseline (nasal
cannula). So we are hoping to make that visit in the coming
weeks!
Also on Friday, the Crofton Men's Poker
League held its monthly event – but did so to benefit
Cameron’s Assistance Fund. It was designed where half of the
buy in and all rebuys went to her charity. Unbelievable
generosity (and real bad poker playing J) allowed the guys to
raise over $1000 in just over 2 hours. As I told the guys last
night, this was yet another example of the love and support of
the community, which we so truly appreciate. Every dime will
be dedicated to getting Cami thru this and back to her friends
and loved ones as soon as possible! Photos of the poker event
will be posted shortly. Until next time…THANK YOU!
Wed 3/5
The last few days have been quietly GOOD.
We have seen a series of good X-rays and successful weans. The
docs are talking about a move from the occilator to the
conventional vent which is another step in the right
direction. This of course brings the next challenge…sedation
is weaned so making her comfortable can be tricky. But hey,
its the right problem to have! We’ll let you know how the next
day or two go, and be in touch soon. Thanks again for the love
and support.
Sun 3/2
Tiny steps forward... Xrays continue to
look good. Small weans on the vent have been successful.
This weekend Mix 106.5 conducted their
radiothon. The folks at JH thought Cam's story would be great
for the radio folks. So this morning, JoJo, Regan, and Sara
interviewed Carol, Julia, Amanda, and me. I can't speak for
myself, but everyone sounded great - I am very proud of our
family, our story, and our strength! JoJo is going to email me
a copy of what aired which I hope link to the blog.
Until the next blog...baby steps
forward!!!
Picture of Cam's day of beauty!
Friday 2/29/08
Wouldn’t it be
appropriate for Cam to make some large strides on ‘Leap Day’.
Well the doc’s rounded this morning and had some good things
to say. The best news being that Dr Nichols thought her
morning Xray looked pretty darn good. Over the last 36 hours
they had been thinking she had gunk in her lungs and were
hoping that suctioning would get a good bit of it out…but not
much was coming. So Dr N said we’ll stop trying so hard, keep
her comfortable, and let her get better. One week ago we had a
very trying few days. We’re grateful this week has brought
more progress than setbacks. Ya know, Cam’s a Terp at heart –
so if she gets better nice and slowly – it’s only natural.
Aunt Debbi’s planning spending Friday evening with her and I
know they both are very much looking forward to it….you know –
girl talk! PLEASE KEEP CHECKING THE WEB AS PLANS ARE COMING
TOGETHER FOR A VERY EXCITING EVENT. THE DETAILS ARE BEING PUT
TOGETHER BUT REST ASSURED IT WILL INCLUDE FOOD, FUN, AND A LOT
OF CAM POWER!!!!
Wedn. 2/27
Monday and Tuesday have brought slow
and steady progress…but progress nonetheless. Her kidney
function has continued to get better…an indicator of that is
her Creatinine level which was trending up last week (BAD) is
now trending down (GOOD), and she continues to pee like a
champ. On Sunday we were told she had developed a pneumothorax
– an air pocket in her chest cavity likely caused by the
pressures of the ventilator. While this can be corrected by a
procedure, the docs wanted it to diminish or go away by
reducing some of the vent pressures…which looks to have
happened. Her lungs remain status quo (we think that’s a good
thing - ??), but Dr Nichols our new attending cautions us that
getting her lungs cleaned up from last weeks trauma (the
aspiration in particular) will be an enduring process…he
expects no less than several weeks. Dr. Nichols explained last
night that the body has to absorb what was aspirated and that
simply takes a while. So in the meantime we’ll keep her
comfortable, let the really smart JH folks get her the care
and nutrition she needs, and continue our quest to St Louis!
We’d like to wish Megan Quick a safe and fun trip to New
Zealand…hurry back Cami misses you already. Megan promises to
bring ‘Cam Power’ to NZ so look forward to posting some great
pics when she gets back. Until our next chat…peace and love.
Sunday 2/24
Its been roller coaster ride over the
last few days. She did go back on the ventilator on Thursday
morning at 3AM. It took a couple of tense hours to get her
settings right, but by mid morning she was again moving in the
right direction. She did so well for the next 24 hours, on
Friday they tried her on a ventilation called APRV which she
did OK on but had to go back to the ocillator over night. On
Sat morning though, the doctors became concerned about her
kidneys as her renal function was becoming very weak. This was
a big concern as we do not want to have to go to dialysis.
Well, as nurse Megan Quick put it, "we saw another Cami
Comeback'. Thru the day on Sat we saw her urine output get
better and better. We exactly don't know what happened or is
up with the kidneys, but we hope it was a temporary setback
called ATN (Acute Tubular Necrosis) where a jolt to the body
(a medication or procedure given) shocks the kidneys and they
stop doing what they do. Lets pray they are fine, and just
needed a little R&R for a few hours. We've never been so
happy to see pee.
The other big news...the process is
officially underway to pursue a Lung Transplant. Two things
are in motion, 1) get Cami better - out of PICU and on her
baseline oxygen need, and 2) her Pulmonary Team is putting her
'story' together for the transplant team at St Louis
Children's Hospital to review. Once Cam is back to her
baseline, its likely we will be off to St Louis for a
consultation. When she IS deemed a candidate and IS listed, we
will be in a waiting mode for a pair of lungs. There are so
many unknowns at this time that we couldn't begin to provide
any more details - just know it gives us a road to pursue to
make her better.
I used to like roller coasters but this
one has been the scariest and I just assume get off! These
days have had some lows but Cami as usual, amazed even the
very smart folks at JH. Although there are so many Dr's,
Nurses, RT's, Techs, etc to thanks as they have played such a
big part in helping Cami thru this, I have to give shout outs
to Dr's Harris, Nelson, Spader, Jacobson and Yang....RT's
Chris, Chris, and Rick, and particularly nurses Megan and
Renee. Cami has a way of winning the hearts of so many...but
Megan and Renee have come to mean so much to us because we
mean so much to them.
We'll be in touch soon with updates to
Cami's progress. She's fighting so keep praying and thanks
again for your love and support.
2/21
Cami had a step backwards last night and
is back on the Ossilator. Just too tired. Keep the
CAM POWER going strong!
2/20
All the Doctor's are smiling when they
"rounded" this morning, why? because Cami is so cute, oh,
and... she is off the ventilator!!! Dr Watson (who put the
tube in - so has vested interest in it coming out) tried at
8pm but Cami threw up (she told him!) they tried two hours
later and she is a Champ!! She is on CPAP (don't worry BJ and
I don't really get it either) pressure support while they do
"trials" to see when she can go back to nasal canula probably
next 24-48 hours, so some days are to be remembered as "red
letter" today is one!
Everyone here seems to be so surprised
when she does so well, little do they know all the CAM POWER
that is being send up here, thanks to all of you!
2/18
Cami makes improvements everyday, the
doc's here are even talking about "extibating" her, (taking
her breathing tube out) very soon,they want to be cautious
because of her lung "condition" but still we love to hear word
like "pleased", "delighted", even "thrilled" and yes they have
said those words. Please keep praying and wearing your CAM
POWER, kids do amazing works everyday, we are living proof!
2/16
Its Sat night at 1:15. She had good
day. Her vent was weaned a couple of time and tolerated
less sedation so that she could show the doc’s that he is
doing more and more on her own. Her blood gases
continued to look. But progress doesn’t come without
leaping a few hurdles…right now her temp has risen, and her
heart rate is up…each of which could be for a couple of
reasons that these really smart people at JH are figuring
out.
Lets just hope Cami will make as much
progress in the coming days as she has in the last
few!!
Thanks for checking in…our love and
appreciation to you all
2/15
Well, Happy Valentine's Day, Cami was
successfully transferred from the Ossilator to a conventional
ventilator yesterday. I wanted to wait 24 hours to make sure
she was handling it well before I blogged it. So all is
well, she is "weening" nicely and is more awake but that can't
be easy with a tube down her throat... UGH, anyway, one big
step, horray!!
CAMPOWER is working, keep sending the
vibes
2/13
Cami wanted to give her grandmother,
Zuzu, a big present today for her birthday by going to a
conventional ventilator but the Attending Doc tried and seems
to think it might hurt her lungs so he will try again
tomorrow, and every day until she gets better. She is off of
nitric oxide (good) and is "weening" a little bit each day so
still moving in the right direction, still gets a low grade
fever, and with all the antibiotics she is on, the infectious
disease doc's don't want to change anything unless she gets
worse... basically we are keeping her happy and sleepy until
her body can recover.
Please keep praying, God is holding her
in the palm of his hand while these really smart doctors
figure out how to fix her.
Sunday 2/10
On Saturday morning around 9AM, Cami's
sat's dropped, blood pressure increased and O2 requirements
went up. It was frustrating because progress was being made.
We think it may have been a reaction to a med. So we restarted
a couple antibiotics that had been stopped and upped her vent
support. As a result her sats and other related measures came
back in line.
She had a good night and while we have
been weaning her vent slightly, the docs want to take it real
slow. When I asked Dr. Mogazel for words of wisdom this
morning, he said confidently, "time". So that's what we'll
give her! Father Paul came by to bless her and we all said a
prayer.
All for now...keep up the Cam Power
vibes. And thanks for the love and support!
2/8/2008
The doc's just came thru and are happy
with her status and progress. She is moving in the right
direction. Albeit yesterday we tried to move to a different
ventilator but were unsuccessful. Not a major setback but it
would have been a positive step forward. SO today the doc's
are happy but plan to take it slow so when we try the next
vent - it WILL work. So today we will see a slow steady
progress of weans to get us to the right place for the next
steps.
Thanks again for the love and prayers!
Cam Power!
|
Cam's Door |
IV/Meds Tower
|
2/7/08
thanks for all your love, support and
prayers they seem to be working. Cami is still on a
oscillator, we tried to convert to the conventional ventilator
but her CO 2's went up too high so they switched back, oh
well, not so much a step back but a try and she is still
amazing.
The pics attached at of one of her
nurses, Megan, who was constantly positive, hopeful and
definitely earned her CAMPOWER.
Please keep wearing your CAMPOWER to show
support, hope and her strength throughout this difficult time.
The more it is worn by people who love her and know that she
will get better, the more she does, and every day she does get
a little better.
2/6/2008
Okay so yesterday was scary. Cami got
worse And by 4am was intubated, during which her blood
pressure dropped. UGH ! NOW, she is sedated, seemly happy, on
a ventilator, and hopefully going in right direction, everyone
here, nurses and doc's, are great and have fallen in love with
her....And are wearing....Campower!!! Please keep us in your
prayers, I know the big man listens , miracles happen every
day
2/5/2008
Cam was intubated this morning. Still the
same otherwise. Carol is very tired.
2/3/2008
