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AS MADISON'S STORY UNFOLDS....
REMEMBER THAT EVERY DAY IS A GIFT....
We will share with you the journey that Madison is on as we have entered into the year 2008.
When first diagnosed in 2005, Madison was told that she had between 3-5 years with no guarantees, as we enter in the 3rd year
we would like to share with you pieces of Madison's journey, please understand that we share this beautiful little girls story
with you because our goal is to inspire you as Madison inspires us, to live life full out, live today and enjoy every moment,
there are no guarantees in life, but we can certainly do everything possible to support and lift up the amazing family
that lives through this moment in time.... every parents fear, that something greater then their love and protection could
challenge the life of their child. Please pray for Madison and her family, her loving sisters, Jordan and Sydney who
walk the walk with Madison every day, and for all the Mom's out there, spread your arms wide open and embrace the day to day
reality that Bonnie, Madison's mom faces, and for Daddy's littlest girl, no other words need to be said.
We will continue to update Madison's progress over the next few months, with the intention
of spreading awareness and love to ALL the children who walk a similar walk with their loved ones.
Please keep your prayers flowing, and if you feel inspired to contribute to the Live Now Wish
Foundation in honor of Madison or any children that we are here to serve, please don't hesitate.
A Progressive Update on Madison.....written by "Mommy"
November 2007
Madison's regular cardiac appointment at sick kids hospital showed that the hole
that they placed between the 2 chambers in her heart , to decrease the pressure between the heart and lungs, was starting
to close. They were also thinking that her medication was starting to stop working as well as it should and thirdly
that they may not be getting a good pressure (heart/lung pressure) as they should be.
At this point they have decided to book Maddie for a Right Heart Cath. During the surgery they will reopen the
hole, do medication testing directly to the heart and lung area, and test for true heart/lung pressure(P.A.P) They would
being booking around March 2008. This way Maddie could have Christmas, New Years, and another birthday. Sick Kids Hospital would also have enough time to book in 2 sets of surgical cardiac teams
( one to be do the surgery and one waiting incase Maddie goes into heart failure again)
December 2007
Maddie has had a wonderful Christmas and New Year. She has been surrounded by family and friends. Stoney
made it to Wendy's and we all were blessed by an invitation (Jan. 5, 08) dinner and just awesome time. Maddie
loved seeing everyone,especially her Stoney. She enjoyed an ice cube fight, playing with the boys,and even crazy carpeting
in the front yard. (black eye and all, she would not change a thing!!!!)
During Dec. we noticed that her energy level was slowly decreasing a bit, she was getting tired faster and she was
taking little naps. Sometimes she would have to rest on the stairs and sometimes she'd just loose energy playing
outside,her sister would come and get us and we'd have to carry her in and she'd rest for awhile. Near the end of Dec.
Maddie would feel sick at night because she'd played herself out during the day,would be in bed early, sleep about 3
to 5 hours and would wake up with a rapid heart rate and hungry so we'd have special time together until 3-4-5a.m., she'd
fall asleep and get up at 7:30-7:45 am for school. Most for the time she would not make a full day of school. She be
home feeling sick, just to tired, headaches, or leg pains.
January 2008
Jan.4 Maddie's doc appt was good, no big concerns / some bad days some good days.
Jan. 9 Thrombosis clinic appt at sick kids hospital (regular year bone mineral density test) Bone test good (-1.1)
not that bad at all within normal acceptable ranges. Leg pains may be caused by the pph and the lack of o2 to the body
parts at times-not much at this point that can be done to help.
Maddie's sick times at night are almost every night now, she is up during the night more, unable to sleep,
she is sleeping past her regular wake-up time by about 2 or 3 hours and her edeima ( swelling in the face,arms, hands and
feet ) is also increasing. Basically, everything, all symptoms of her pph is increasing. Sometimes maddie finds it hard
to walk up the stairs and she lies down at the top to rest and sometimes she finds it hard to walk down so she bumps down
on her bum. And then some days you can't tell she is sick at all.
Jan.18 Doc appt Maddie is sent for complete blood work up and to have liver enzyme checked. Also a chest
X-ray to see if the heart enlargement is greater then the last x-ray.................(Chest x-ray look good ...not to
much larger)
So at this point if Maddie needs more sleep ...Maddie gets more sleep. If maddie can only attend school for 3
hrs a day ...that is all she does.
Jan. 28 Maddie awakes up 2 or 3 hrs late for school and is complaining of being very tired and she is very swollen
in the face ( way more then normal) She is up on the couch for a P.J. day. A very quiet day for her. By
6 p.m. Maddie is complaining about being dizzy when standing or sitting,
so off to local hospital and a over night stay until her pediatrition doctor comes in the morning and all the echoes and blood
work start but she is released by 1 p.m.. Maddie stays home from school all week due to periods of dizziness.
February 2008
Feb.1 doc appt Her pediatrition doc feels that the heart surgery that is booked for March 20th needs to
be moved up, that we may not be able to wait until March and he has requested that we both start to phone her nurse
at sick kids hospital and inform her of Maddie's changes. And as far as the dizziness ...............as
long as Maddie has not passed completely out there is nothing that they can do for her. They meaning Oshawa General Hospital. We will manage the dizzy spells at home.
I did call Maddie's nurse at sick kids and we are waiting for her cardiac Dr to come in on Monday but her nurse
seems to think that the surgery will be moved up and at the very least that Maddie will need to come into sick kids for tests.
And just to add a little kink into the situation Maddie has a sore throat this morning upon waking up and developed
a taste cough by bedtime............. a chesty cough.
Feb. 4th Madison and the whole family went out to a "Hannah Montana" 3-D movie concern which Madison , Jordan and Sydney enjoyed it to the max. That night however Madison paid the price, she had chest pains and shaking for 3 hrs on and off and woke the next morning very tired and
just not feeling well. The remainder of the week was spent fighting a cold and just tired.
Feb.
6th Sick kids hospital has booked Madison in
for a complete cardio work-up to see if the surgery date needs to be moved up ...........Cardio appt. Feb 19th.
Feb.
8th Madison has a pediatrition appt. Her Dr. feels Madison is stabley unstable. We will have to wait for the sick kids appt. on the 19th. If Madison has chest pain we need to deal with it at home, unless the pain lasts for 45 minutes to a hour with
consistent pain or if with the chest pain there is dizziness and feeling sick then we'd call 911. So if Madison is tired ...Madison sleeps, if Madison can only go to school
a couple of hours......a couple of hours it is, whatever she can handle is what she does.
Feb. 9th
Madison went to her friends birthday party for 4 hrs and was up 2 hrs with leg pains and
dizziness.
Feb. 11th Madison wokeup for school and was back to bed within 35 minutes just to tired and feeling sick.
Feb. 12th Madison finally
went back to school (she has been off sick since Jan. 25th)! Madison came home
from school in good spirits with all the usual school stories. She was happy to find out that she was still allowed
to be in orf. By 9pm she was up with a severe headache and dizziness for 3 hrs and a small nose bleed.
Feb.13th Madison late for
school, need extra sleep this morning, but she went and was home by 1pm with
a severe headache and sore tummy. She had a nap for an hour or so and was fine. Just before dinner
her and Jordan played outside for about 20 minutes before she came in with chest pains that last about 1 1/2 hrs.
Feb.
14th Madison seemed a little swollen today when she got up but off to school she went.
Madison was up during the night with chest pains again and just in her words "not feeling
right". Pains on and off for about 3 or 4 hours.
Feb. 15th Madison has her pediatrition Dr. appt. this morning. After a update on how the
week has been going for Madison and the physical exam, we were told to be ready to be admitted into hospital
on the 19th of February, because more than likely the time for her surgery is now, but if not Madison will be back there next Friday to keep an eyes to things.
Okay, Madison is having a hard time with this challenge. If surgery can wait until
March 20th she will be in hospital for Easter and that is not how she wanted to spend Easter. She made that quite clear
to her pediatrition today. We have decided not to tell her that she may be admitted into hospital on the 19th of February.
because she will miss her birthday that she has planned for the 23rd and that is really not what she would like to see happen.
My
sister with be here for Tuesday morning to get Sydney and Jordan off to school. If Madison ends up going into surgery on Tuesday my brother will get the girls from school
and bring them to the hospital. And if there is no surgery until later in the week, I stay with Madison in the hospital, Keith will continue going to work days leaving at 4:30 a.m.,
my sister will stay at the house and get the girls off to school. The girls can come home at 3:15p.m. and go to the neighbours across the street until Keith gets home.
The only other thing I will
have to do is organize a birthday party in sick kids hospital if she is in for her birthday.
LIVE NOW until the next entry.... please keep on praying......
Feb. 19th
We head to Sick Kids Hospital all packed and ready in case Madison was to be admitted but that did not happen. Madison had her echo on her heart, an E.C.G. and her 6 minute stress test. The E.C.G. was good, the stress test
showed a decrease of 5 meters (nothing to be alarmed about) and the echo showed no change in pulmonary pressure and it shows
a slight decrease in heart size. The test are not showing true results that should go along with her chest pains, dizziness,
tiredness and swelling. The Dr.s feel that the PPH is progressing. The Doctors are saying that a true reading on
her heart can only be taken with a right heart catheter (surgery on the 20th) but that Madison's heart may not be strong enough
for the surgery so that may not be an option. Her doctor stresses the importance of having no problems in the catheter.
lab like last time. Last time Madison was having this surgery in the catheter laboratory she went into cardiac
arrest and spent 2 days in C.C.U, and we didn't think she was going make it. We will know if surgery is a go on
the 18th of March when she has her pre-op for surgery. At that time her Cardiac Surgeon with do the pre-op and in the
mean time we sit and wait for the 18th of March. They added a water pill to the medication she already takes to help with
moving the fluid away from her heart and this may decrease the chest pains a bit. They had a talk with Madison about the need for her to find balance in her life. If she does a lot in a day she will have chest pains, if
she runs around and plays like other kids she will have chest pains, if she doesn't get enough sleep she will have chest
pains........They talked to Madison about being honest with the way she feels because the Doctor does not want to
make the wrong decision about the next medication she will use or about surgery on March 20th. The next medication is
Flolan. This will involve surgery with a direct line from the heart going out of the chest to medication that Madison will carry 24/7, in a backpack on her back, this will give her medication every 3 minutes. Madison will also have an open line on her arm in case the medication line to her heart becomes unconnected. we can also give medication through her arm if we needed to. Madison will have 3 minutes to get reconnected to the medication or she dies. So I can see why the Doctors. need to
be very careful about the decision to place her on this next medication. This medication cost over $100,000 a year,
it needs to be mixed every 4 to 6 hours, the medication needs to be on ice 24/7 so the backpack that Madison will carry
will have icepacks in it, and needless to say quality of life will decrease a bit for Madison, the active 9 year old, but
if the medication works it does miracles.
So if on March 20th surgery is a no go, we wait for health/ quality of life to go down hill for
the right moment to start the Flolan or for transplant. If surgery is to happen on March 20th we wait and see what's
to happen and have family and close friends ready for any outcome.
We were also asked at this time if we could place Madison in 2 research groups. One is for a genetic research to study PPH and the other is for information gathering and sharing
to better understand PPH because as much that is known about PPH so much more is not known. With the genetic research
group Sydney and Jordan will give DNA samples also.
We also left Sick Kids with a heart monitor for 24 hours to get more information about what her
heart is doing.
We left Sick Kids and on the way home Madison
had her chest pains and during this moment we just have to wait and see.
Feb.20
Madison did not go to school, she did not want to because of the heart monitor. It was good that she stayed home because
the water pill that was started today is working overtime. A lot of incontenance issues today.
Feb.22
Madison had her regular appointment with her Pediatrition, this was to inform
him of the findings at Sick Kids and just a regular check up of Madison. She was very swollen
that day and tired. The usual .............keep a close watch on her and wait until March 18th and 20th. We expressed
our concerns about the water pill and incontanance issue, he suggested we wait to see if it all levels out.
Feb. 23
Madison had her birthday with her classmates. A nice quiet day .........NOT! It was planned for a quiet
birthday, just 2 crafts, pizza, cake and presents and play time. Well the " paint a keepsake box" tuned into face and
body painting, and the ' chocolate kit" turned into an eating contest which turned into a hyperactive couple of hours. But all "LIVED NOW" and 2 girls stayed for a sleep over. This is the first sleep
over that Madison has had since being diagnosed in 2005. Madison was very tired and had chest pains
on and off but it was all worth it .......she was very happy.
Feb.24
The best part of Madison's birthday was today
............a visit from Wendy, the boys(Chase, Hunter & Walker),and Stoney.
John and Kathy, dear friends, joined in and brought Storm(dog) and made the days events even
better. Madison played with the boys all day, and Stoney joined in on a cake eating contest
with the kids.
(no hands only face feeding ) ..........Chase won.
Good times!!!!!!!!!!!
Feb. 25
Madison stayed home from school today, she was very tired and had chest pains. I had a talk with Madison about being "balanced" as the Doctor at Sick Kids tried to explain to her.
If she does a lot of activity and pushes herself to her limit, she will have chest pains and
be very tired. Middies understands and she says she is not changing a thing
. Her words "I have to have fun".
Feb. 26
Went to school but home with chest pains by 11:40a.m.
Feb28
Missed school today, she was not feeling right.
Feb.29
Pediatrition doctors appointment with a regular
exam and Madison is doing about the same. She was taken off the water pill and
placed on a more gentle medication that will do the same thing.
We need to talk to the girls (Jordan and Sydney ) and have them understand how serious this situation
is and that Middies could die and that we will get through it. I have to do that and I wish I didn't have to.
March 2008
Well it's been a long month!!!!
This has been a long month of waiting for the 20th and surgery. The month started
out good with Maddie having some really good days of being able to play outside in the snow for 2 t o 3 hours without tiring....but
all good things come to an end and reality catches us off guard again. This month Maddie has been tiring faster and
she is becoming angry at the disease and at me and the Doctors for not making her better. She feels that I do not understand
when she feels sick because in her words "you don't know, you don't have PPH", and she is right and I'm struggling with what
to say to her to make it better. She is very scared about the surgery and does not want to stay in the hospital
at all, she does not want to spend Easter in the hospital, and she knows she is getting sicker and she is scared. Maddie
is having nightmares, sleeping in my bed or we both just spend the night on the sofa snuggling. She constantly needs
reassurance that I love her and that she loves me.
THIS HAS BEEN AN EMOTIONALLY CHALLENGING MONTH!!!!!!!!!!!
There has been very little doctor appointments
because there is really nothing to be done until the pre-op on the 18th and surgery on the 20th. The first 2 weeks we
managed the dizziness, the goggle eyes, the sleepless nights, the collapsing from tiredness and sobbing almost every
day. At times it seems like we are just watching her get weaker and weaker every day.
The one good thing is that since she has
been taking the water pills the pains in her chest have completely gone. The one new thing is that her vision is very
blurry at times.
March 17
The Pediatrition appointment was as usual, a regular check up. Her Doctor has classified
her as critical and the blurry vision is more then likely a result of lack of oxygen to the optic part of the brain when Maddie's
pressures are high. She needs the surgery on the 20th.
Her Pediatrition feels that Maddie may be experiencing panic attacks and anxiety, which
he feels would be quite normal at this point. (I know I am). He reassured Maddie that the Easter Bunny goes to hospitals
where children are and that she will get through this surgery and that he would being seeing her the end of next week.
March 18th
Sick kids pre-op appointment went
well. Maddie had x-rays, stress tests, ECG’s, echo’s, we met with all the doctors and anyone playing important
roles in the surgery on the 20th. I had to sign consent forms for Maddie to be placed on life support in case the worse
was to happen. That was a hard thing to do but it is done. Before we left, we took Maddie and showed her the Catheter
Laboratory where the surgery would be on the 20th. An awesome looking lab, it is all decked out in outer space things
and floor to ceiling lava lamps.
March 19/20
I had to give Maddie
a needle the night and the day before surgery. The girls know that the surgery tomorrow is very serious and they will
both be coming so we can help Maddie through this and if anything difficult happens we will deal with it as a family. I packed up for a stay at sick kids and got about 11/2 hours sleep, woke up at 4:30 am and out the door by 5:00am
and at the hospital at 6:30 am.
One of my sisters drove down with us and my other 2 sisters and brothers
met us at the hospital. Maddie was admitted to the cardiac floor by 7:30am, down to the Catheter Laboratory by 8:00am
and by 8:30am we were told they would not do the surgery because there was a shortage of nurses in ICU and that Maddie was
too high a risk to operate on without dedicated nurses for her in ICU, so go home and call Monday for a new surgery date.
March 24
New surgery date April 3rd
6:30am
Maddie woke up with
a cold, sore throat, stuffed up nose and head ache. So more time off school and I have to get the cold gone before April
3rd.
March 27th
Chest pains and sobbing 3 times today.
March 28th
Regular appointment with the Doctor, her chest sounds clear. The Doctor reassured Maddie that everything will be fine and that she would be fine.
After
we get through this surgery, we will be looking at putting Maddie on a mild anti depressant but we will talk more after surgery.
The Doctor asked
Maddie to be his face book friend using my account and this has made Maddie very happy.
APRIL 2008
April 1st and 2nd, 2008
We spent the night getting ready for surgery. Maddie's blood thinners were discontinued on March 31st and her needles (vitamin K ) are given 2 times on the 2nd. I decided to give
the needles to Maddie myself because I think this will be a normal procedure for Maddie and I need to learn how to give her
needles.
April 3rd 2008
Our morning starts at 4:30
a.m. (I slept for about 1hr 20 min). We all
leave (Keith, myself and all 3 girls),stop along the way pick up my sister and niece and arrive at Sick Kids at about 6:00
am.More family is already there to support Maddie. At 6:30 a.m. Maddie is
admitted and we start to meet the surgical team. We are made to understand, once again, the seriousness of the surgery
and that they will do everything in their powers to make sure all goes well but that Maddie could die. Maddie tried
running away and was carried into surgery. The three of us had to hold her down to get the mask on. The surgery went
well and the pulmonary pressure had not gone up very much at all.
Maddie was discharged the following day.
April 4th 2008
Maddie seems to be recovering slowing, very tired and just feeling sick.
April 6th 2008
Maddie has collapsed a couple of times today. This time when she is collapsing she's becoming cold inside and
she is having difficulty breathing. She is feeling more sick then usual.
April 7th 2008
Appointment with her pediatrition. Maddies pulse and pressures are
very low. I need to call sick kids and start a chart of her symptoms.
April 21/2008
Maddie's pediatrition has booked her in for a sleep study at Oshawa General to see if Maddie would benefit with oxygen.
Results were that oxygen stats do not drop low enough to benefit from receiving oxygen.
For the remaining of April Maddie has been going down hill slowly.
May 2008
May 3/2008
Today was a bad day for Maddie. She over heated 7X today and nearly passed out 7X. She has an appointment at
sick kids on the 6th of the month.
May 6/2008
Sick Kids appointment, Maddie had all her regular testing once again and
this time the results were that her heart had enlarged in one month and her pressures have gone up, She experienced
difficulty with her exercise test and stress test. A long meeting with her cardio dr. and the decision has been made
to start the process to have Maddie placed on a Flolan Pump. (a line will be placed into her heart through the chest wall,
the line will lead to a pump ,about the size of a dinner plate, the pump will be pumping medication into her heart every 3
minutes 24 hours a day, Maddie will carry all medication and pump in a back pack on ice) Sick kids want to start the
process the end of June and we want to start the process the end of Aug., if not the end of July. We have been planning
on going to Florida to see Stoney and swim with dolphins, we have cottages booked for the summer, we are going to Great Wolf Lodge
on June 22 and once Maddie gets the Pump she will no Longer be allowed to go swimming or have baths.
Needless to say Maddie is very upset and does not want the pump, but the truth is without the pump sick kids feels
Maddie will be dead within a year. There are not to many choices.
May 7/2008
Maddie bought a swim suit today and has decided that she will go swimming, go down water slides, climb trees, and ride
a motor cycle before she gets the pump.
The rest of the week Maddie started to have emotional break downs.
May 12/2008
Maddie told her pediatrition that she could not handle all the stress
of school, pH, the pump and being sick.
Maddie’s anti-depressants were doubled, oh yes, the nightmares are back.
May 20/2008
Pediatrition appointment, her pulse is low, blood pressure low, coloring not good,
heart sounding worse. Pediatrition feels Maddie is running out of time
quicker then thought. Need to up date sick kids.
May 23/2008
Maddie woke up to day later then usual and looking horrible. She was shaking all over, chest pains, feeling like she
was going to vomit, a bad color and very scared.
Saw pediatrition within 40 minutes. Maddie started feeling better in about 2 hrs. Doctor told me if this
happens again and I can't get to him we are to take her to sick kids. And of course update sick kids about
this mornings events.
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be made at the "Store" link of our site. All donations will be used to support children and their needs throughout Canada
and the United States. Thank you for your contribution, you make a difference.
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