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July 20th - Michelle continues to fight, she
is now making red blood cells and platelets, although she is using
the platelets as quickly as she makes them. SATS prone and
supine stay in the 90's. Liver enzymes are ever more
slightly improved, kidneys remain functional and no fever
during the night. Michelle could use a few more "good"
days. The doctors and nurses continue to take
exceptional care for Michelle, please thank them as you have the
opportunity. This morning Michelle was supine for over 3 hours but
her blood gases were not great so they moved her back on her front
once again. She still remains in very critical condition and is
monitored closely every minute. Her temperature went from too high
a few days ago to too low this afternoon so they needed to cover her
up and crank up the heat. They are trying to get her into the supine
position longer and longer each day which will help with her
blisters and swelling. She had lots of friends visit her today
(some of the Aquinas College gang) showing their support during her
fight. She still remains on the oscillating vent and rotoprone
bed and this makes her 14th day in ICU and her 37th day in the
hospital.
*Then
your light shall break forth like the dawn, and healing shall spring
up quickly.
Isaiah 58:8 |
 July 19th-Michelle had a decent night last night with her SAT
and blood work better than yesterday morning. She was able to
lay supine for around 1 hour 30 minutes last night which was great
and allowed them to do some work on her front side. Her
kidneys are still working (yesterday they were talking about
possibly putting her on dialysis ) which is positive. Her
liver blood work is still high but down a little from yesterday.
Lung X-ray is still the same as yesterday but no worse. We need her
organs to hang in there and continue working . Please continue to
pray for a miracle that Michelle can get through this....1:30 pm-
Michelle managed to stay supine for 4 hours- that is what they
wanted her to do today....and her numbers were good during the flip.
Now she's prone and still pulling in good high numbers....we are
happy with her SAT for now. Keep up those wonderful prayers!!!
*On
another note: while you are saying prayers, Michelle's grandfather Sedlecky will be at Spectrum Hospital in GR today having an
angioplasty on his heart. Please also include him in your prayers as
Michelle would want that. (*Update- Everything is fine with
gramps!!!) 10:30 pm. Update, this was a good day (remember there
will be some not good days ahead) SAT up to 95-98, Ventilator
pressure slightly lower, temperature normal all afternoon, kidneys
hanging in there and spending quality time supine (about 7 hours).
Some of Michelle's friends were up and her heart rate went from 145
beats per minute to about 130 as they talked where she could hear
them.
A strange mix of army men and angels continue to look out for
Michelle's health. |
July 18th- Michelle was supine for over two hours last night
with good
SAT (blood gases) but the blood work didn't come back to support
it. Shortly after she went back into the prone position her temp
spiked to 104- and the blood pressure also decreased. She was put
on meds to keep that up into more normal ranges. Her kidney's are
not working well today. During recovery of ARDS kidney and liver
failure are common. We are still holding on to one of the nurses
comments earlier this week- that things usually get much worse
better they can get better- Still struggling with the fact that here
in the ICU unit there is no team leader or master plan...every 12
hour shift we get a new idea from the new ICU doctor working. One
wants her to stay on the oscillator vent / or rotoprone bed and then
during the next shift the another one doesn't.
The number on her screen is measured by a devise on her finger is
her SAT.
Oxygen content (O2CT) and oxygen saturation (O2Sat)
values. O2 content measures the amount of oxygen in
the blood. Oxygen saturation measures how much of the
hemoglobin in the red blood cells is carrying oxygen (O2).
When they take a blood the measure the PaO2 and O2CT.
Partial pressure of oxygen (PaO2). This measures
the pressure of oxygen dissolved in the blood and how well oxygen is
able to move from the airspace of the lungs into the blood.
Until recently the two (O2CT and O2SAT) were very close, however,
they seem to be 4-7% different lately.It is so wonderful to have
all the prayers, love and support from everyone. Relatives and
friends have come in from all over to be with us and help us out
during this rough time. We appreciate every little prayer,
email/snail mail and visit we get even though we may not have
thanked you personally. Michelle's condition has worsened but
we still believe in miracles.
During the day her SAT were better than in the morning and some of
her lab work improved slightly, like her kidneys were working better
than the night before. Lung X-rays were a tad worse however. |
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July 17th- 9:30am- We are still waiting to hear if Michelle
is going to be able to go to U of Michigan for treatment. She
still needs to meet some criteria in order for the procedure and
AIR-O med to take place. St. Mary's and U of M are in consultation
on going. We are hoping she remains stable enough to be able
to go. Her stats, and temperature were consistent throughout
the night but she needs to retain them as they put her supine
for over an hour. The procedure they hope to do is similar to
a by-pass, but on the lungs from the femoral vein to the femoral
artery to oxygenate the blood so her lungs could heal. 3:00PM-
after waiting for hours...it was determined that Michelle is not a
candidate for the ECMO procedure due to her present condition.
It would be too risky to move her, or even perform any surgery on
her at this time. This doesn't mean we are giving up....just another
big set-back. Thanks to everyone who offered to help us when
we thought we were heading southeast (locate housing, watching the
dog, prayers, cheer-leaders , etc.).
Her blood work is showing signs of liver distress probably due to
her heart / lung problems . Mike continues to get discouraged with
the ups and downs of the ventilator progress and has made a
spreadsheet/ bar graph of her Oxygen levels to demonstrate his
theory with her proning/supine periods. (His techie mind is always
working) She continues to be on the rotating bed and
gets flipped every 10-12 hours or so. We continue to hang on
to all the success stories the nurses and staff share about others
who have overcome serious illnesses similar to hers. So
pray she becomes one of those stories as well. |
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July 16th - Michelle's condition remains consistent without
improvement. A new option
has been presented. Transferring her to University Of Michigan
hospital using their
ECMO unit for transport. A team will assess her
condition tomorrow and if she still is a candidate we will progress
to that facility for them to treat her. St. Mary's Hospital
has reached there limit in care they provide for the condition she
has currently. PRAYERS PLEASE!!!! She continues on the ventilator.
The respiratory technicians are adjusting it frequently to balance
her CO2 levels, pH and pO2. Yesterday her blood test results
showed that she is no longer nuetropenic, however nuetropenic
precautions remain in effect. We were told yesterday that a typical
ICU experience does have good days followed by bad days. We'll
today we are feeling it's one of the bad ones...the supine flip had
complications with the hoses and now she's slow to recover from the
SAT decline. Yesterday the flips went much better. No
improvement noted on today's AM X-ray is also a little discouraging
to us here. |
July 15th- 8:30am currently being turned supine, and time to
do bathing, Chest X-ray, changing tubes, and other needed things
while she is in an upright position. 2 - 3rd shift nurses from
Lacks came by to visit (one was the one who worked the night of the
fall and blackout...and the other was the one who was working the
night of the rigors and the night we ended up here in ICU. Sue
(Ventilator technician) left this morning to return home- she must
have been confident with the respiratory team here at St. Mary's to
run the machine. Throughout the night they tried and tweaked
the vent to a good pressure Michelle could handle. They were
unsuccessful in getting in the ART line and maybe after more
platelets they will attempt this once again. We are awaiting the
results of the latest Chest X-ray to see what it shows and the
results of the blood work to see if some of her infections are
getting a little under control. The lung condition
(ARDS) is what we really needed to get a handle on.
The ART line was successfully put back in so we now have more
actuate numbers to go by and also able to get blood gas results
which are real important. Michelle's stat's are still
consistent but the X-ray didn't really show any improvement as of
yet. Her Bone Marrow is showing signs of recovery - there are White
Blood Cells and Neutrophils, we are expecting platelets in a few
days, then red blood cells after that. Her blood work shows some
small signs of improvements in some areas which we are taking as a
positive response. She received blood and palettes'
today.
The Slacker (seen in the picture a.k.a. younger
brother Matt) is hanging in there and catching some zzzz's where
ever he can.
*For those of you who wanted to know if there is anything
they can do....we'll there is..."Give blood , or platelets"
soon as the blood supply is getting tight and Michelle is requiring
a lot for her treatment. |
July 14th - The night was quiet, her SATS stayed
great, resulting in O2 being at 85% this morning. The blood
work looks good, the bed treatment (3 hrs prone, 1 hour supine) is
going well. The only big thing planned for the day is a ART
line - this is like a IV except in the artery. The ART is used
to draw blood and monitor Blood Pressure.
Her platelets remained low after transfusion (remember to
give blood Monday) so replacing the ART line was not attempted.
She has been supine (on her back) several times today, overnight she
will spend some additional time on her stomach.
She tolerates a lower pressure on her stomach from the ventilator
and there is some air (tiny bit) seeping out of her lungs into the
tissue by the heart. This was caught early. If due the higher
pressure it had seeped outside the lungs differently she would have
collapse a lung and required a air tube installed. She
certainly doesn't need any more tubes.
On a high note her White Blood Cells were 2000 tonight (4-5 thousand
are normal), we will see about those nuetrophils in the morning.
Hey were are down to 5 pumps pumping (from 9-11) things into
her for the moment.
During the recovery period she will have good days and bad days,
there will be ups and downs.
Mitch and I decided that we were ready for more good days than bad. |
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July 13th- She rested throughout the night and her O2 levels
continued to rise slowly. Now at 7:50am up in the low 90's and
that is almost in the normal range. (92-100% is ideal). She's not on
blood pressure medicine any more and has received her second bag of
food. Her rash she's had on her back (from antibiotic
reaction) is improved. I (Sue) was able to go home and sleep-
after 2 days without any, and Mike is planning on going home for
some sleep and a shower which he hasn't had in 2 days.
The private small family conference room which the hospital has
allowed us to use is now a make shift- sleeping room for us here at
the hospital. The big hurdle today is trying once again to get her
on her back for some time to relieve pressure in her face, chest
etc. She has always been unable to tolerate this position so
far...but we are more confident now with the new Sensor Medics
oscillating ventilation machine. Her Cancer doctor was just in
and she's reported to have some white blood cells now- helping her
with her fight. (Not much but some better than none) We are
waiting for blood results and another chest X-ray to see if they can
see any improvement. She has gone from 10- IV bags/drips to
now only 8. Her chemo is still on hold until she is stable
enough to tolerate it.
The machine works different from the last. The first
ventilator work like you were taking 20-30 normal to deep breaths a
minute. This one keeps her lungs under pressure and replaces a
little bit at time (like you are panting really fast with your lungs
full). Please keep up all the prayers as we now have a small
glimmer of hope. Some very positive things from the last 24
hours;
- New respirator maintaining her vitals (Blood Oxygen)
-
Nuetrophils are starting to grow
- Last E-Coli culture (test) was clear
- She is on 95% Oxygen instead of 100%
- Her chest X-Rays indicate improvement
- Heart rate is down and Blood Pressure is normalizing
Concerns about some of the dips in Oxygen and Leukemia remain.
Michelle remains in critical condition as longs as she requires a
respirator and maybe beyond. Her recovery time from these
infections will be measured in weeks, as things will progress very
slowly.
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July 12th-
(midnight- currently 5am) Her Uncle Charlie spent the night recording her
dips and rises on a piece of paper trying to figure out what
side/way/position she would get the best oxygen at and try and keep
her positioned there the longest...(He's definitely in the running
for uncle of the year) At 3am she started trying to
breathe on her own (fighting the respirator) which is a sign she is
fighting. They immediately tweaked the machine and her oxygen
level rose a bit. Lots of excitement for us all still here at
the hospital (Dad, Mom, Aunt Katie, Mitch, and Uncle Charlie) she
rose 5-6 points, Baby steps...some of us are trying to sleep in
chairs, couches, and however we can. Others (Charlie- working
on adrenaline and drinking coffee.) She is receiving IV food
now...first meal in 5 or six days. All of her other vitals are
showing some improvement except her breathing. *Not sure what
the staff here thinks about us...we cheer for every increase in
oxygen level and bribe her with money and trips for small oxygen
increases as well. Her uncle Richie promised her a raise, mom
a trip to Vegas, and she's making some cash as well with our bribes
to cover her gambling expenses. (she shouldn't remember any of this)
This is just some of the little things we do to pass the time, and
help Michelle with her fight. We have her toy soldiers positioned
around her room helping her fight these infections since she doesn't
have any immune system to work on her own. Most of here don't
know what day or time it is...and this journal is a great help to us
to recall/remember when she had procedures and what day we are on.
On a good note her kidneys are doing a good job now and are trying
hard to release some of the excess fluid she's retaining...please
ignore any grammar and spelling problems, to sleepy to proof-read.
9:30am- still up here... Her Lung
doctor has ordered a new high tech jet vent ventilator (a technician
is currently flying in from Florida to administrate it) to see if it
will help her get the needed oxygen she needs. The technician
should be here sometime this evening and the machine which is
currently only 3 hours away will be here when she arrives. The staff
is very excited about having this equipment for Michelle... X-ray
came back that the lungs have gotten worse and one side probably
isn't working at all. She's had to get hand bagged (more
pressure than respirator) several times throughout the night to
increase flow. The hospital is trying everything to help with her
battle. She is fighting with everything she has...
The oscillatory ventilator arrived
at 10:45pm and Sue the technician from Augusta Georgia (but working
in Florida) arrived around 11:00 pm. Machine was hooked up
immediately and her oxygen levels increased rapidly from the mid 70%
to around the low 80's. Then at 11:30pm a hose blew but that
was quickly fixed. Once back on the machine she started to
increase gradually. |
| Check the Old News page previous days. Diagnosis
High Risk B-Precursor Acute Lymphoblastic Leukemia |
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| This web site is pink because Michelle
said - "I want it pink." |
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