September 1, 2014
2014 Has Brought
This is an update that I have been
putting off doing, because I didn't want to put into words
what has happened in 2014. After our trip, Erinne's condition
has rapidly deteriorated. She has been hospitalized 6 times in
the last 8 months. She has a reoccurring MRSA (staph)
infection that the doctors cannot get rid of. It is located or
colonized in her trachea. The infection has taken a toll on
her body, causing her to lose a great deal of strength and
stamina. She is exhausted all the time and, on many days,
would sleep for 22 hours a day. She relies on her ventilator
to breathe for her more and more. She has developed auditory
and visual hallucinations, possibly from the medications, and
has had thoughts of suicide. She experiences significant
levels of anxiety. She had to cut back on school hours. She
was afraid to fall asleep at night. It took every ounce of
energy she had just to go to a doctor appointment. She has had
a grand mal seizure.
Erinne has spent her summer either
in the hospital or home recuperating. She was not able to join
her travel hockey team this summer to play in St. Paul, Minn.
She starts school tomorrow -- her senior year. I am praying
she will be able to finish it and graduate. I am hoping and
praying she will have the strength and stamina to play hockey
this year. Right now, her neck control is not good.
For those of you who have come here
in the past, looking for a cheery update on Erinne, I am
sorry. I want nothing more than to be able to give you that.
But this is the reality of SMA. SMA takes and takes and
takes.....until there is nothing left.
I hate SMA.
I hate what it is doing to my
If you came to this page through
the front page of Erinne's website, you saw that we are trying
to raise money through GoFundMe for an emergency generator. We
lose power frequently in this area and that translates having
to move to a hotel (which I cannot afford) before the
batteries on the ventilator run out. It is a race to pack up
and find a hotel with an accessible room before the batteries
run out. PLEASE consider making a $5 or $10 donation towards
our quest for a generator. If ½ of the people who read this
make a donation, we would have the generator before the bad
weather sets in. The link for Erinne's GoFundMe account is http://www.gofundme.com/ErinneRoseWilliams Or
if you prefer, you can go to any Chase Bank in any state and
make a donations to Erinne's trust account. That account
number is 2747823769. Life has been stressful enough
without having to worry about whether or not we'll have power
to run all of her machines.
Please pray for Erinne, to be
healed of the MRSA, and for her stamina and strength and neck
control to return to pre 2014 levels.
God Bless you.
Days 8-10 - Sea World & Epcot
took the day off on Saturday to rest. I forgot to mention that
on our last trip to Epcot, after the Star Wars simulator ride,
during the transfer from their wheelchair to ours, Erinne's foot
got stuck and she felt a pop/crack. I am pretty sure a bone in
her ankle is broke. We have been icing it and Ace wrapping it
but there isn't much more they can do for it since she doesn't
bear weight at all on her legs/feet. On Sunday we went to Sea
World were we took in a couple of shows. It was not much
different than the other Shamu shows I've gone to in the past,
but I enjoyed watching Erinne's reaction to it. The difference I
did notice was that the trainers are no longer in the pool with
the whales anymore, probably due to the death of a trainer a
while back. On Monday we went back to Epcot and had dinner at Le
Cellier (based on the Ratatouille movie.) Foot still bothering
her a great deal. Thank goodness for pain meds that she is
already on. I will have it looked at once we get back home.
Tomorrow is Downtown Disney and Cirque de Soleil's La Nouba.
Day 7: Swim With The Dolphins Day!
Cove: WOW! WOW! WOW! This day was incredible! Discovery Cove is
as beautiful as it was fun and relaxing all at the same time. I
HIGHLY recommend you visit this next time you come to Orlando.
Breakfast, lunch, snacks and even beer was included AND a free
day at Sea World too! The only downer was the weather -- a cool
and breezy 70 with rain. This was Erinne's first time in
immersed in water with her trach and she seemed initially like
she would be ok -- until she actually got in the water. Then she
got panicky. We took her in the fresh water pool (85*) to get
used to it and in preparation for our dolphin swim in 2 hours.
Water never got in her trach, but that didn't seem to matter. We
were in very shallow water and she was sitting on my lap but
worked herself into a full blown panic attack. We took her back
to the cabana and after an Ativan and a 1 ½ hour nap, she was
resigned to the fact that she was going in the water with the
dolphins. (It wasn't the dolphins she was afraid of. She has
swam with dolphins before on our cruise 2 years ago. It was
strictly the water that had her scared.) She had lots of time
with the dolphin in shallow water, and even kissed one of them.
She did not do the actual swim in deep water where you hold on
to the dorsal fin and a flipper and the pull you across the
pond. But I did and it was soo exciting! When our ⅓ hour
was done, we had to get our sweatshirts on and wrap Erinne in a
couple of blankets -- it was that cold. I swear we are going to
be the only white, pale skinned people to go to Florida on
vacation and come back without a tan. :( We have lots of
pictures on a cd (I couldn't exactly take pictures and tread
water at the same time!) that I'll post when we get home.
Definitely recommend this
place even over Disney World.
December 26, 2013
Disney Days 5 and 6:
Christmas Eve and Day
Erinne took her down day on
Day 4, venturing out only to eat on the 24th. The 25th and
26th Were spent at Epcot. Erinne loved Epcot, which is why
we returned for a second day. We weren't in the park for
long though, as she was in pain sitting both days. I was
itching to get back to Germany to relive some memories and
taste some delicious food from when I lived there 1983-86.
Oh well, maybe another day. Tomorrow is Swim with the
Dolphins Day!! It is supposed to be 75 degrees and no rain
so I hope that is indeed the case. Somehow we have to get a
wet suit on this floppy young lady before she gets in with
the dolphins. Should be interesting!
December 24, 2013
Disney Day 3
Magic Kingdom: The best part
was my birthday dinner in Cinderella's castle. The not so
great part was all of the rides that Erinne could not go
on, because she was required to transfer out of her
wheelchair to one of theirs, which made her feel unsafe.
She said the Magic Kingdom wasn't what she expected and
she was disappointed. She asked for a down day tomorrow to
catch up on her sleep, so that's the plan for now. Latte
had an 'accident' which made things a little exciting
(NOT). We had things cleaned up before they got there to
do the cleaning. All they had to do was disinfect the
area. I guess her tummy was a little upset.
December 22, 2013
Disney Day 1
Arrived late last night at
the magical world of Disney. The dog did great on the
plane. Today is a catch up on sleep for Erinne. Then some
pool time and a venture into Downtown Disney. Tomorrow:
The Magic Kingdom to celebrate my birthday with Cinderella
and dinner at her castle!!
December 7, 2013
I have been doing a terrible
job keeping up on the journal. So much has happened; so
much has changed. I look at the message below and I can
see that I need to correct a few 'events'.
Erinne didn't have sinus
surgery. In an almost unheard of fashion, 6 weeks of
antibiotics and a round of steroids, Erinne's sinus
infection and swelling were able to clear up without any
sucking and mucking around from surgery. She still needs
to have the last surgery of the placement of cartilage
under the skin of her nose to cover up the piece of metal
from the facial surgery this past summer. That was
supposed to be done Nov 26 but we lost our surgical date
due to the sinus surgeon telling the maxillofacial surgeon
that his surgery had to come first. They gave us a new
date of Dec 13 but that wasn't good in case she had any
complications --- and our vacation started the next week.
So now the surgery has been moved to Valentine's Day --
February 14th. She has the following week off of school
which will be good for healing. It is my understanding
that the nose is not the painful part. It is where they
harvest cartilage from her rib that is painful.
She loves school but it is
still exhausting for her. Many days she comes home from
school and is asleep by 3:30p and sleeps until wake up
time the next AM (5am) Sometimes a 4-5 hour nap will due,
but not often.
She seems to have something
going on with her heart again. She has been having
episodes of tachycardia (fast heartbeat) which is
accompanied by elevated anxiety. She knows what's going
on. She is sixteen and a half years old. She understands
SMA and that there is a heart component to the disease.
(Although there are only a few doctors here that recognize
that.) So when her heart starts beating fast, she gets
very nervous and upset. She has told me that she wants to
be home when this happens because she is afraid that no
one else will be able to save her except me. Powerful
stuff. (She has also told me what she wishes she was born
first so that she would have had more time with me. (Moved
me to tears). She is such a loving, sweet girl.
After the first of the year I
am going to take her to Columbus to Ohio State University
to see a cardiologist that DOES agree there is a heart
issue with SMA, and see what can be done, and where they
are with the research.
We leave for Disney on the 21st
-- just 13 days away! We are very excited to be someplace
warm. I am most looking forward to her encounter with the
dophins. I think that is what she is looking forward to
the most too. We are hitting up all of Disney World,
Universal Studios and Sea World. We will also be visiting
a place called Give Kids The World, which is where we
stayed when she visited Disney as a Wish Kid back in
December 2000. I am excited to see what all she remembers
from that trip. She does have some holes in her memory,
because a couple of months after our trip she ended up in
the hospital on life support and had been without oxygen
(hypoxic) for a period of time. You can read about that
time in her story (http://www.our-sma-angels.com/ErinneRose/story.html).
Erinne is still playing hockey
twice a month and loving it!
I'll try and update before we
leave for Disney -- if I haven't lost my mind by then!
up Summer and Feet First into Fall!!
started with such a bang that I forgot to update you! Erinne
is doing "okay", relatively speaking. On the plus
side, her face is BEEEAUTIFUL!! The final surgery to finish
her nose will be November 26th, 2 days before Thanksgiving.
Most kids stay 1 night; because Erinne is Erinne, she will
stay 2-3 nights in the hospital.
loves school and is enjoying her junior year, She especially
enjoys chemistry and advanced algebra. She went to her first
Homecoming this year.
the down side, poor Erinne has had a sinus infection for the
past 36 days, which has made her feel miserable. A CT scan
of her head showed severe sinusitis and a lot of stuff in
the frontal cavity that isn't supposed to be there. We are
seeing an adult sinus specialist on Wednesday. I suspect
another surgery is in her future. Hoping it is possible to
do a two-for-one on the 26th, if we go that route.
all this child has been through this year, starting with her
trach last January, she deserves a nice vacation. I am
taking her to Disney World for Christmas. All of the plans
have been made, flights booked, dinner reservations made and
the packing list started. We definitely don't travel light.
In fact, we have to take every machine we own except for her
bed! Once Latte gets wind of a flight in her near future,
she is not going to be happy with that. She has flown once
and definitely did not care for the experience!
keep you posted on her sinus experiences as things develop.
one bit of very good news --- if you know Erinne's BFF,
Olivia (also 16 yrs, also SMA 2) is getting her trach this
Friday! This has been a decision long in coming for Olivia
and we know her health is going to improve so much once she
starts breathing better. Erinne feels so much better since
I sign off, love, hugs and kisses to Claire. Try and take it
easy and put your feet up when you can. We love and miss you
very much! xoxoxox
managed to fight off that last bug on her own, with our
home regime of treatments. She continues to recover from
her surgery. We are also gearing up for school to start.
Erinne has had about 10 follow up doctor's appointments
these past 2 weeks --- all is well. She is still being
followed closely by her surgeon and we have one more small
surgery to fix a couple of things. No date for that yet.
has registered for her classes and is looking forward to a
great Junior year. She was only able to attend part-time
for most of her sophomore because she felt terrible. We
are optimistically thinking she should be able to handle
full time now that her breathing is better, her nutrition
has changed and she is sleeping better.
would like me to wish her sister Claire a Very Special
Happy Birthday. Claire just turned 28 and is expecting her
second child. We love and miss her so very, very much!
to all, but especially to Claire.
August 1, 2013
So hard to believe it is
here already! I don't know about you, but Erinne has spent
most of her summer break recovering from her surgery. She
looks GREAT and has a little swelling on the right side of her
face. Part of her face is still a bit numb. I'll take
some pictures soon, I promise! She is looking forward to being
able to eat again. Right now she is up to soft, mushy foods
which doesn't appeal to her. She still has a little
orthodontic left to be done, which should be finished by
Christmas. I can't wait to see her smile without and hardware
Erinne is sick again and fighting pseudmonas. She's not been
out of bed in a week. She's back on antibiotics again. Her
lung doctors put her on an inhaled antibiotic along with an
oral one. If she is not better by Monday, then she has to go
to the ED to be admitted. Think positive thoughts, ok?
Prayers were answered, while we were in the midst of 3 people
calling 45 moving companies. The ICU bed arrived at 10:00pm. A
few nicks in the walls later....exhausted Erinne was tucked
into her new bed. We are blessed to have such a wonderful bed
for her. I'm tired too. I'll worry about disassembling the old
bed and cleaning up the living room tomorrow. Thanks for all
of the words of encouragement and prayers.
AM SO PISSED!!!!!!!!!!!!!!!!!
I finally found the ICU bed (Hill-ROM Sport) I
wanted for Erinne and met with the gentlemen selling
it today to give him the final payment. Meanwhile,
back at home, Erinne's nurses set up Erinne's bed in
the living room and took everything possible out of
her bedroom so it would be ready for the new bed.
The movers were scheduled to show up at 1:00p. Since
the weren't on
time, we left to head back home. The seller calls me
before I even get back home and tells me the movers
are there and they are refusing to move the bed
because it's too heavy (500 lbs) it doesn't come
apart, and it would have to be moved on its side,
where there are electronic panels. The movers didn't
even bother to call me! So I am home by this point
and called (seriously) 13 movers and not a single
one would touch the bed!! I called the moving
company that Hill-ROM uses and they "don't
deal" with patients -- just Hill-ROM. That's
how they get paid. So I guess plan C is to call
Hill-ROM and beg some more tomorrow and then contact
the news stations tomorrow and see if they can help
me. Then to top off my day, my son falls off the
roof cleaning the gutters and somehow it is my fault
because I didn't hear him yelling that the ladder
fell and he had to jump off. I asked him here his
cell phone was and he informed me it was in the
garage because he didn't want it to get wet. And
somehow all of this is my fault. I just want this
day to be over!
Post Op Office Visit
UPDATE!!!! Post Op Day # 16 -- We've had our first post op
visit (besides the ER trip and admission a couple of weeks
ago) with the surgeon and he told Erinne, "Wow -- you
have A LOT of people in the hospital that know you and were
pulling for you, and for me to do a very good job!").
They took out 40 staples from her scalp, a stitch and 2 VERY
LONG stents holding her nostrils open (very gross
looking) and 3 rubber bands holding her mouth closed. She
was beautiful before, but she is GORGEOUS now! But this
surgery was not about beauty; it was done because she could
not breathe through her nose, and opened up previously
sealed maxillary sinuses (which was causing pain) and her
jaws did not allow her teeth to meet up. She is still
swollen, especially on the right side, which will go down
with time. We see the orthodontist next Monday to see what
their plans are now that things have shifted. She has gone
through a lot of pain to get this far and I am so proud of
was discharged late Saturday evening, after several rounds of IV
antibiotics. The CT showed pockets of fluid on the right side of
her face, but inconclusive as to what it was. Blood cultures
were sent. The swelling went down enough that I felt better
about taking her back home. So after 2 nights, we packed up and
headed back home. Her swelling has gotten better over the past 2
days so I think we are over the hump. She got her hair washed --
staples and all -- tonight and that had to have felt better. The
staples come out on Monday 7/8. She has stents or little tubes
in her nose, holding open her nostrils and she is very anxious
to get those out. Her face looks totally different -- different
nose, different cheeks, different chin. It just amazes me. She
is so beautiful. She'll have the braces on for a couple more
months but everything should be finished by Christmas.
Friday, June 28, 2013
Spoke Too Soon!
Erinne is back in the hospital, I'm sad to say. I brought her
back on Thursday evening to the ED for asymmetrical facial
swelling which concerned me greatly. They think that she
either has cellulitis or an infection in her surgical site. A
STAT CT scan was done this evening and I am waiting to hear of
the findings. Please keep her in your continued prayers. With
26, 2013 Wednesday
Surgery -- Thank You Jesus!!
had a very successful surgery! Dr Edwards did a magnificent
job with the bones in Erinne's face. The procedure was long
-- just under 7 hours. Dr. Edwards said he had quite an
audience because he only sees 1-2 Le Forte II cases a year
and those are usually from trauma. It is rare to be able to
plan one out ahead of time. They showed us Erinne's skeleton
head they made from all the moulds and measurements they
took, and also a computer sketch that was made of the areas
they would operate on with before and after pictures. WOW!
What extensive changes they made!
Erinne was in the hospital from Friday - Tuesday. She
required 2 blood transfusions of packed red blood cells. She
lost 700 mls of blood during surgery and had a constant
drip-drip from her nose. She seems to have stabilized so I
am hoping for no more transfusions.
sees her doctor on July 1st to get the staples out of her
head, and has two more two week interval appointments after
that. She's already going crazy from the lack of food (no
eating for 2 weeks). She can only take in liquids until she
sees her doc again and then he will determine her diet. Her
mouth is elasticed shut (as opposed to wired shut) "I
don't DO soup, Mom!"
I've posted pictures of each day on Facebook.
has had such a great attitude through all of this. I can't
wait for the swelling to go down to see exactly what her her
face looks like. Already I see that her lower jaw doesn't
jut out like it did previously. Her underbite is gone; teeth
are lined up perfectly.
think it definitely was a very successful undertaking.
Hopefully Erinne will feel that way too in a few weeks. All
she is concerned about right now is getting back to playing
you to all my prayer warriors for your continued prayers for
Erinne and me, We couldn't have gotten through this without
19, 2013 6:15pm
hours until surgery. We are both very anxious and nervous. Had
not to be when they tell me they usually only do 1-2 of these
procedures a year. I know she is in God's Hands and will be
okay, but right now, my nerves are getting the better of me.
There are so many questions and so few answers because again, of
the frequency that this surgery is done. I am reassured by the
surgeon we have chosen, and
we also got the anesthesiologist and CRNA that we requested so
that gives me some peace. But I am still frazzled and nervous.
Surgery is scheduled for the first case on Friday at 7:30am.
We're to expect about a 5 hour procedure, with at least an hour
of that positioning, getting an IV in, etc. <deep
breathing>, <deep breathing> Wish I knew yoga. In
case you missed it, this is a BIG facial reconstruction surgery
to repair the severe mid face hypoplasia and upper jaw
undergrowth/lower jaw overgrowth she has going on.
June 9, 2013
ON ERINNE WILLIAM'S FUNDRAISING !!!!
Plymouth Canton Community Schools National Honor Society raised
$20,115.58 for her !!!!
We received this GENEROUS,
KIND donation from Erinne's high school from the JS5K run they
held in May. We're over half way there! Can you please help us
with a small donation AND post this to your website? If everyone
who reads this donates $20 (the price of a couple of lattes or
dinner out) and posts it to their FB page, we'd be over the top
and could order the bed before Erinne's surgery on June 21st! We
sure would appreciate your generosity!
here to go to Erinne's
June 8, 2013
out for summer!!!
finished school today, a few days early. She took
her exams early so she didn't need to go next week.
(I don't know who's idea that was, but I appreciated
it!) Now the big job is to keep her healthy for the
next 2 1/2 weeks, before her surgery in June 21st.
She is becoming a little anxious about the surgery.
I can't begin to imagine the thoughts going through
her head, thinking about waking up with a new face.
Eating has become more and more difficult for her
because of the poor jaw alignment. She is constantly
biting her tongue. Please pray for her peace of mind
for the next two weeks, and for good health!
So hard to believe my baby is 16! It
certainly hasn't been an easy journey for
her, but she has shown everyone that she
is one tough lady! She said tonight she
enjoyed her birth-day and the friend party
we had today. On her birthday we had to go
in to school for her IEP (fun-fun-fun!),
then went out to dinner where she ordered
2 lobster tails (but sadly, could only eat
because she has such difficulty chewing
because of her jaw alignment) and then
went shopping for her Beats headphones.
Today (Sunday) we had her friend party at
Lucky Strike Bowling Alley and Arcade. She
had friends from school, hockey friends, a
friend from camp and her cousin. She opted
not to eat any of the food, again, because
she can't chew very well anymore. (Surgery
to fix this is scheduled for JUNE 21st.)
The kids bowled 2 games and then had a
swipe card to play in the arcade for an
hour. I'm pretty sure everyone went home
happy. I know Erinne did!
She goes back to school tomorrow. She has
been out for the past week, fighting a
virus, likely from a kid (who was sick)
who thought it would be funny to cough in
her face. Yeah, really funny all right.
On this Thursday she has a 3D CT scan done
of her head and moulds of her face made in
preparation for her surgery. They will do
a mock up of the surgery on the
"head" they made so that they
know what exactly needs to be done and
what the outcome will look like. I am
looking forward to seeing the mock up.
Erinne will look like a new person!
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