24, 2013 Wednesday
had her first bronch today. The doctors take a camera, a light,
sterile water and suction and go into her lungs to see what's
what in there. What they found was a whole lot of stringy sludge
in both lungs that didn't take kindly to being disrupted. They
told me their suction kept getting clogged up with her sludge.
They said they put in more water than they were able to suction
out, so to expect lots of coughing and suctioning tonight. They
also said she could run a fever and possibly end up with
pneumonia as a side effect. Well, her temp is already 102.2.
Gonna be a long night, but thank goodness we are at home!
14, 2013 Sunday
A New Problem
Not quite sure what is going on but when I am suctioning Erinne,
a fair amount of fresh blood and little blood clots are coming
up from her lungs and it is not coming from the trach itself.
This has been going on for 5 days. Each day there has been more
blood. I am wondering if it is from the .07% hypertonic saline
that was prescribed for her as a breathing treatment. Could the
hypertonic saline cause the lung tissue to bleed? She complains
that the hypertonic saline burns her throat. Needless to say, I
am calling her doctor in the AM.
Pneumonia/Pseudomonas 1 Erinne 0
We are still on the losing side of this bug. That
"crud" I mentioned before (the dead white cells and
dead pseudomonas cells) are stuck like glue to the bottom of her
right lung and I can't get it out. She still is requiring oxygen
while sleeping. We went back in to see the pulmonologist
yesterday. The chest xray is improved, but still shows the
crud sitting in the bottom of her lung. So Erinne was put on
steroids, her vent settings were changed to higher numbers to
help pop her left lung open. We are already doing CPT (chest
percussion therapy). And, she is going to be scheduled for a
bronchoscopy. A bronch will allow them to go into the lung and
suck out the crud that is glued in there. We've gotta have this
cleared up by April 30th because she has to be healthy 6 weeks
prior to surgery, which is scheduled for June 21st.
PS. Don't forget to look at the April 6th entry for ways you can
help Erinne and her school raise $$ to purchase her new hospital
A WAY YOU CAN HELP ERINNE
Erinne's high school, Plymouth, along with Canton and Salem high
schools, are holding a 5k race/1 mile walk to benefit her
medical needs (currently a desperate need for a specialized
hospital bed). They are also
helping 2 other families as well. Here
link describing it and a
link to Erinne's video. The Facebook page is SJ5K
I am hoping that those who read this (especially my Botsford
Hospital friends and Bright Horizons friends and my high school
friends) will want to participate in some way to support this
wonderful opportunity. You can come and run/walk, or you can
remain in the comfort of your own home and make a donation. Here
is a link to the form to do both.
Registration goes right up until race day (but to get a t-shirt,
you have to register by 4/11/13).
It would mean A LOT to know we have many supporters near and
far, behind us on race day.
I feel the love already! ♥
FINALLY -- Some good news
The crud (that's a medical term, btw) that is sitting in the
bottom of Erinne's lung is a bunch of dead white cells and
dead pseudomonas. The good news is that the antibiotic killed
off the 3 types of pseudomonas that she had growing. The bad
news is that we still have to pull it all out. I can handle
that kind of bad news. :) She has to stay on her vent 24/7
to blow the right lung open and allow is to cough and suction
it out and continue with her 9 daily breathing treatments
until her next dr appt in May. Erinne is a little testy about
the constant ventilator time, but she is going along with it.
She is on an oral antibiotic to wipe out any remaining bugs.
All in all, a much better outcome than what it could have
been. Praise God!
Pneumonia #22 -- YIKES!!!
Erinne just didn't seem to be getting better on her TOBI
inhaled antibiotics so I took her back to the pulmonologist
today for a recheck. Well, she has pneumonia #22. I took a
sputum specimen in for culture. We can't start on antibiotics
until we know what the current bug is sensitive to. Hopefully
not an IV antibiotic that she has to be hospitalized for. :(
I'll know more on Thursday. In the meantime she is on her
ventilator 24/7 except for hockey on Saturday (that was what
she negotiated). We've had to add another medication to her
breathing treatment routine. Erinne also has been needing 3
liters of oxygen when she is sleeping. She is not a happy
camper right now. This was not how she expected to spend her
spring break. This infection seems to have taken quite a
stronghold. Please pray that this infection can be managed at
home and she not have to be hospitalized. She needs to have 6
clean weeks before her June 21st surgery so we have our work
cut out for us.
One final note -- one of her hockey friends, Anthony Nelson,
died unexpectedly on Easter. His dad is Erinne's travel hockey
coach. We stopped by the funeral home today for visitation.
Such a sad, sad day.
it has started...
vicious cycle of pseudomonas. Erinne's culture came
back positive today. She also has a sinus infection --
again. So we now join the merry-go-round of 28 days of
tobramycin, 28 days off, 28 more days of tobi... and
Augmentin thrown in to keep things interesting. She
has been telling me she just feels terrible, and
between this and her lower back....of course she does!
The sinus infections won't totally go away until her
facial reconstruction surgery on June 21st. And I
despise pseudomonas! (Anyone have any pointers for
me?) I hope she'll get some rest this weekend and feel
better on Monday.
Wristband Spotted on TV!!
Babcock, Coach of the Detroit Red Wings, was wearing Erinne's
wristband during the Edmonton game tonight!!!!! I saw it on
TV!!!! Thank You Mike!!!
saw the ortho surgeon yesterday who believes Erinne's pain is
from the IT ligament's (which was released or cut in 2001)
scar tissue which likely ruptured or tore when I sat her up in
bed. No other treatment other than what we are already doing
(anti-inflammatories, heat (she can't tolerate ice), Valium
(for the muscle spasms) and pain meds. We'll follow up with
her next month. They x-rayed her spine and all of the hardware
is right where it is supposed to be. It is just going to take
time for this to heal. So disappointing because she had
finally stopped having back pain and stopped taking her pain
meds after her trach surgery. Now we're back to square one
February 26, 2013
Erinne has had a great deal of back pain all day today. When I
sat her up in bed this AM, something went *pop* and she was in
severe pain. Despite pain meds, the pain was significant
enough that she had to come home from school early and went
straight to bed. The pain continued through bedtime. She
questioned on whether a piece of hardware in her back might
have cracked or broke. The thought crossed my mind too. I
guess we'll have to see what tomorrow brings....my poor
Week Back At School:
Erinne continues to do well at school, despite picking up a
sinus infection (which doesn't really surprise me, given
that because of the facial bone displacement, her sinus
cavities are partially blocked.) She attended 1 full day;
all the rest have been half days. She is a little more tired
than usual, but again, I attribute it to the sinus
infection. One of her doctors
suggested that we wean her off her migraine medicines, which
I started to do, only to have her migraines return. So,
we'll stop that for now. She is off for mid-winter break
this next week so I am sure she'll get plenty of rest and
kick the sinus infection's butt! The past 2 week saw her
play 2 hockey games in her league and also took in a Red
Wing's game. She's getting her hockey fix for sure!
is a totally new person. Energy. Energy, Energy.
(Certainly more than me!) Her breathing is
stronger. Her voice louder and clearer. She is
sleeping normally for the first time in over a
year. And did I mention how much energy she has?
The doctors this week have commented on how good
her color is and how bright her eyes are. The
pediatrician asked, "Should we have done this
understood my resistance to the trach. I realize
hindsight is 20/20 but I do wish I would have done
this sooner, as I watched her slowly get weaker
and more tired.
To the type 2 parents who are seeing their child
get weaker or more tired, don't just attribute it
to the effects of SMA, please consider a trach.
Erinne didn't want one before it was done, but 3
days afterwards she said she was happy she had it.
She starts back to school on Monday, 2/4, part
time. She is telling everyone she is going back
full time right away. I think she will go back to
school full time sooner than I expected.
I am so happy with how well things worked out.
Thank you Jesus!
the other SMA parents struggling with this
decision, don't struggle. Just do it.
January 24th, 2013
It's chaos -- there
are suitcases and boxes of equipment and supplies
everywhere, but we're HOME!! Groucho was so wired
for sound, he didn't know who he was happiest to
see -- Erinne, Latte or me. He has since settled
down and I am looking forward to snuggling him
tonight. The 3 weeks were rough on him. Erinne
took a nap in the middle of having 2 vendors
hooking up equipment. (And guess what, SMA
families --- I got the new CoughAssist!!!) The
nursing supervisor came by and formally opened the
case. Our first nurse arrives at 11pm tonight.
I'll be up with her for part of the night since
she does not know Erinne or her machines. But I
can take a nap tomorrow when Erinne does. Gotta
run -- more tomorrow."
January 22th, 2013
Op Day 18:
We are still here. Discharge date was Monday, then
Wednesday and now, hopefully, Thursday. If not,
then we will have to wait till Monday again
because they don't do trach discharges on Fridays,
Saturdays or Sundays. Waiting on the paperwork
from the state, as usual, which is paying for the
nursing care. The good thing is I will have 21
hours of care until she goes back to school. Now
having 21 hours of care on paper is one thing.
Having it filled by actual, live nurses is a whole
'nuther problem. Erinne continues to do very well.
She is missing her puppy Groucho very much. I
worry about whether he is getting fed enough and
is going outside enough and if he's wearing his
coat. (Its bloody cold here). When I've gone home
to check on him, he wasn't. Erinne complains of
boredom so she naps a lot. It is too cold to
journey outside of the hospital complex and she is
tired of eating mac-n-cheese and southwest rice
(the only thing she eats on the menu). We don't
like to venture out too far from the cough machine
and we haven't gotten our portable one (fingers
crossed) yet! Special thanks go out to Stacey
Marino Troxtel for bringing me dinner last week
and a gift card for Erinne and to Mott's CRNA Jan
Kinney for bring Erinne teen magazines to read and
posters to decorate her room. And as always,
Olivia Werstein and Cynthia Werstein for your
visits, food and companionship!
January 20th, 2013
Op Day 16:
got a "get out of jail free pass" and
Erinne's dad took us out to dinner tonight to
Mongolian Grill. She was very happy and did well.
Dinner wore her out and we finished quickly and
headed back (drove) to the hospital. It was a
biting, bitter cold which didn't help her feel any
better! We won't be going home tomorrow; Wednesday
is the earliest we can expect. We had wonderful
weekend from Olivia & Cynthia Werstein, Kris
Liz Orvis. Mary Colby
Roderique gave Latte some very much needed walking
time. We missed visits from Diane Budja, Julie
Newland and Becky D'agostino because we were out
on our passes this past week. So sorry we missed
you ladies! Friends who were up on the floor and
already went home were Ben Grindle (Tj Grindle)
and Emma Leonard (Lisa Murphy Leonard). Tomorrow
(Monday) I meet with the nursing supervisor from
the agency we are going with and supposedly Monday
afternoon they will tell me if they can provide
staffing for us. Keep your fingers crossed!!
January 15th, 2013
Op day 13:
successfully passed the "24 hour test"
to see if we (Kevin and I) could take care of
Erinne without nursing's help. (duh). Kevin did
really well changing her Trach for a 3rd time. He
coughs and suctions her like a pro! We went home
again for a couple of hours and Erinne enjoyed
that. Kevin had to spend the night with me in the
hospital...with only I cot for the 2 of us. so we
sleeping. But that wasn't the worst part. THE
WORST part by far was learning that my son had
horrible stinky shoes that were enough to gag
you!! I almost asked him if he had moss or
something growing on the bottom of his feet! In
this small room it was eye-watering!
So now we are supposed to be discharged on Monday
and it is NOT looking like we'll be able to go
home then after all. Nursing is still not set up
and we can't go home until it is. I'm going to
talk to the agency again and see if they can move
a little faster on this. We are more than ready to
Tuesday, January 15th,
Op Day 11:
was our "12 hour pass day". That means
that the medical staff would not be assisting us
(they aren't really anyway -- we are pretty self
sufficient. Erinne and I have a system or routine
-- just the 2 of us) and we could leave the
hospital WITH all of our emergency equipment.
Kevin had to be a part of the 12 hour pass as he
is my back up person. We went home for a couple of
hours so that
Erinne could see all her babies (pets) and take a
nap in her own bed. Kevin had to change Erinne's
trach twice today which is a bit unnerving if you
are a non-medical person (or an SMA parent). He
did well with the trach change, and is doing great
on suctioning and coughing her. Our next big day
is Thursday and we will have a 24 hour pass. That
one really feels like a graded event that we'd
better pass, or else....what? I won't be able to
take my daughter home, I guess. But we'll do fine.
We are supposed to go home on Monday 1/21 but I
have a sneaking suspicion that nursing isn't going
to be ready to go on Monday and we will be stuck
here for who knows how long, Erinne's voice sounds
better each day and she actually said she is happy
she got the trach! Her sleep is phenomenal -- she
never wakes up during the night anymore and wakes
up feeling well-rested. We know she's gotten REM
sleep because she is dreaming. What a relief!
January 14th, 2013
Erinne is doing,
"remarkably well" according to her
doctors. She is progressing much faster that the
normal person does, going through this type of
procedure. There has been some pain (ok, a fair
amount of pain) in the process, but she has
handled it like a trooper -- tough girl that she
Erinne has adjusted
to speaking around her trach very well, and her
voice is a little stronger than it used to be.
Those who have been around her know how weak and
breathy her voice used to be. Speech therapy will
be working with her to help her make the most of
her lung power,
Other than that, we
are going stir crazy here, bouncing off the 4
walls. Tired of hospital food too. Still shooting
for a release date of Jan 21st, if (home) nursing
is in place. We miss our beds and the puppy,
sit, sit, SIT" (From
Dr. Seuss -- do you remember which one?
"The Cat in the Hat")
Well, that's what
we're doing -- just sitting, or in my case,
standing, to endless suctioning/coughing
sessions. Erinne is doing little
better each day and is talking a little more
each day. Today she visited the gift shop and
the kids' activity room. We will be here until
January 21st -- lots of training to be learned!
Going a little stir crazy right now.
If you have Facebook
account I usually update on Erinne daily and
post pictures. You can find me under Suzanne
Budenaers Yopek Williams.
Friday, January 4th,
Erinne had her trach
surgery today. She is currently in the pediatric
ICU (PICU) at Mott Children's Hospital in Ann
Arbor. Coming out of the anesthesia was a little
tough this time.
~ Update: Sunday January 6th, 2013 ~
Sorry, I didn't get to finish that last post.
Things have been crazy busy. I have so much to
learn! The palliative care doc came to see her
and reminded hèr that she needn't suffer
stocially from the pain and that there were
plenty of pain meds available to keep her
comfortable. She promised that she'd not wait so
long to ask for pain meds.
The big trach change
by the docs is Monday, at which time she
will be able to get out of bed and
move around. Then my training begins and I get
to know everything there is to know about a
trach. Kevin will need to come in and be trained
as well as several friends and her nurse from
school. Monday will also bring a swallow study
to make sure she can still eat! More later.
January 1, 2013
NEW YEAR to you!
and researchers are oh-so-close to a cure for
SMA. May THIS be the Year of the Cure!
Erinne is doing quite well. Lungs are clear. Now
she is just building her stamina back up. We
have to go to the hospital on Wednesday so they
can check her lungs before they give the, final
go ahead for surgery on Friday.
has had a sleepover with her cousins Rachel and
Madeleine last week and then friends Melissa and
Jessie came over for a visit on Saturday. They
have all helped put a smile on her face. We're
going to try and squeeze in a couple more friend
visits before surgery on Friday.
Did you see the new picture on the top of the
first page? That is my favorite picture and that
saying is SO true of Erinne.
Please pray for continued good health for Erinne
and guidance for the doctors during the surgery
and strength for Erinne during her