2010
May 31 - Tube Free & March for Babies
Our computer with Rees’ website died in Feb and we have just had time to load it on
the new computer. This is our first update since is a link with the first update since
Christmas.
Rees had fun with his Paw Paw from Indiana who came for a week in January. Then
we spent a lot of time in January and February going back and forth to check on Rees’
Pop Pop in Waco who had complications after surgery. Pop Pop recovered just in
time to come to Houston to watch the Baylor Bears in the Sweet 16 and Elite 8 on his
birthday. It was fun to have a pre-game party at our house.
Mom had two out-of-town conferences in March—my first time to leave Rees for
more than 24 hours. This made Rees a very unhappy camper. Even when I returned
home, Rees would get upset if I left the room. It took several weeks to recover from
this trauma.
Rees is totally obsessed with playing outside. He spent all spring outdoors, so he is
not happy now that we have moved into the summer heat when he can’t stay out all
day. He hangs on the doorknob and cries to get outside. He has figured out how to
open doors (yea! & oh no!), so we fenced in our side yard enclosing the back
door/garage/driveway to the back yard. A huge anxiety reliever for mom! Plus lots of
shade for playing outside.
Rees is enjoying school and doing well. He gets 2 weeks off for the beginning of
summer, and 2 weeks off at the end.
Rees also understands more and more. He is getting frustrated that he can’t tell us
what he wants, so we think talking is just around the corner. He is really playing with
sounds and is very cute when he gets serious and babbles very important-sounding
phrases.
Mom received a great report in March. After going down on my Gleevec dose in
September to alleviate the chemo side effects, my indicator # (BCR-ABL) still went
down (from 0.01 to <0.01). This is awesome news because now I can continue on the
lower dose that is much easier for me to handle—less stomach upset, bone pain,
cramping, etc.
Our big news is that Rees is tube free! Below is a summary of the
saga of getting rid of his feeding tube.
Because Rees was doing so well eating, drinking and gaining weight, on Friday, April
30 Rees had surgery to remove the g-button (feeding tube directly into his belly). The
out patient procedure went well and Rees did great all that weekend, but then Monday
morning the site opened and poured out stomach acid, and his breakfast.
This lead to a trip to the ER and a painful week in the hospital as we fought the
stomach acid which burned his skin and tried to occupy a busy 3 year old who
couldn’t get out of bed. No time in the hospital is ever easy, but this was the notably
miserable because this was the first Rees was really aware, in terrible pain, and
trying to escape, plus it was totally unexpected. This complication happens less than
1% of the time, but as you know Rees likes to play the odds.
After one week in the hospital we got to go home with a ND feeding tube (nose to
intestine, bypassing the stomach) to allow his stomach to heal without food. Rees
was a trooper and wore the feeding pump in a backpack all day since it had to run at
a slow rate 24/7.
On May 17, the hole in his stomach finally closed and Rees could eat. Mom and dad
got to pull out the feeding tube. Alleluia! No more tubes!
After over 2 weeks of not being able to eat. He was so excited to finally eat again. He
is still eating better and faster than ever. It has taken two more weeks for the site to
completely heal. The skin is still itchy and irritated, but the wound shrinks a bit every
day. The hole in his skin that was once the size of a nickel is now a tiny scab smaller
than a pea.
Rees has missed over a month of school, so it will be hard adjustment to go back—
especially since he has had so much snuggling time with mom and dad. He has
summer break next week and then returns June 7.
This was an exhausting ordeal for all three of us and we now are relieved that all of
Rees’ major medical issues are resolved. We are so proud of Rees and how hard he
has worked to overcome challenges with such a sweet disposition.
March for Babies
Many of you have asked recently, and YES, you can still make a donation to the March
of Dimes in Rees’ honor ($10 on up).
Here is the link: www.marchforbabies.org/ReesyPie
Last year Rees received a Medal of Honor from the March of Dimes for being one of
the top 100 walkers in the USA. We feel very blessed to have friends that help us
thank the March of Dimes for their miraculous efforts in helping all babies off to the
healthiest possible start--even the tiniest babies like Rees.
January 10 - Holiday Update
It has been so long since our last post…we are busy keeping up with the new school
schedule. Rees cried all day at school for 2 weeks. This was shocking since he truly
never cries—unless you are shoving a tube into his nose or putting in an iv. He
became leery about any outing to a new place, clinging to us afraid we would leave
him behind like at school. After the first two weeks the crying starting lessening
each week until I got a ceremonious fake cry when the car would stop at school. He
is now back to his old happy self.
Rees is doing a great job on his goals at school and we can see a difference. He is
much more aware of his surroundings and others, and loves the busy day. When he
gets home from school in the afternoons he crashes and naps for 2 to 3 hours.
He is still doing a wonderful job eating his pureed foods and drinking. We soon will be
working on chewing…a big task.
After Thanksgiving Mark and I got strep throat, and then it came back over
Christmas. Rees stayed well thank goodness, but did come down with a virus at
Christmas. We celebrated with the Texas relatives before Christmas and then
stayed in Christmas to monitor Rees’ fever. We all were on the mend just in time to
fly to Chicago to see Mark’s family. We were all shocked by the frigid temps in Illinois
and Indiana. Rees had a grand time with his cousins. One highlight was sledding
with cousin Jack.
Two of Rees’ favorite Christmas presents are an alligator see saw and a tricycle that
mom and dad can help push – he LOVES them and gets so excited when he gets to
ride. He is now trying to figure out how to open the doors to get outside to play. Rees
also got a big boy toddler bed. He is doing pretty well with the transition.
Also at Christmas break Rees also got a new pair of glasses that are a little bit
stronger. We think they help because he seems to be running faster towards things
at a distance. Rees also got ankle supports to keep him from walking on his toes.
They are working and make him bend his knees to walk. The supports are to break
the habit and show him the more efficient way to walk. He is expected to wear them
less than a year. They look uncomfortable, but he doesn’t seem to mind them once
they are on.
We posted Rees’ famous Christmas footprints on the link above. We are happy to
report that his feet are growing nicely, no longer doubling or tripling in size each year.
In the fall, Rees went to Waco for his first Baylor homecoming. He had fun at the
parade with his cousins. Rees had a fun birthday party with his friends. We can’t
believe he is now 3! We had a fun Thanksgiving at the Robbins house.
Just before Christmas we lost a beloved figure in our lives. Father John Robbins who
Christened Rees this April passed away from cancer. We are so blessed to have
been connected with him as family.
Second Half of 2008 & 2009
October 10 - First Day of School & Drinking
Rees started school this week! We still can’t believe it! He is not a big fan yet, mostly
because he doesn’t like sitting in the circle with the other kids and sitting at the table
for more than 2 minutes. He would much rather be toddling around. He also swells
with tears when we drop him off.
Rees is at The Arbor School, an amazing place that helps kids with a variety of
challenges. We think this is the best place in the world for Rees. His teachers are
very sweet. He is in a small class with 2 kids per teacher. They incorporate his
developmental goals through out the day’s activities, which include art and recess
everyday. It was so fun hanging Rees’ first masterpiece on the fridge.
We didn’t even cry the first day of school because we were so proud of this huge
milestone. Mom did cry the night before—all tears of joy for this accomplishment—
thinking back of when we were scared Rees may never go to school, never leave the
hospital, or never leave the house except to visit the hospital. What amazing progress
Rees has made the last three years. Thanks be to God! Alleluia!
Rees goes to school 9 to 2:30, Mon through Fri. It is pretty far away from our house,
but the commute is worth it.
A very generous supporter of the school donated his business to the school. He still
runs the company, but all profits go to The Arbor School to keep the tuition
affordable…so if you are in need of any type of rubber stamps (standard or
customized) for your home or office, please order them through Arbor School
Products: www.arborschoolproducts.com. Please also share the site to your friends.
We will keep a link on this site so you can find it in the future.
Our other big news is that Rees is drinking! Ya Ya stayed with us for several weeks
to help with Rees while we were waiting on the first day of school. She helped Rees
in the biggest way imaginable: she taught Rees how to drink. It is amazing. She first
started with a spoon then switched to the tiny cups that come with liquid medicine.
Rees in now drinking most of his daily need of fluids. A few days he has drank
enough to not even use his g button and feeding tube.
He continues to eat his baby food well and we are now starting to transition from
jarred baby food to regular food that we grind in the food processor. This will give
him more appropriate calories for his age. Today he had Kraft Mac and Cheese and
Quaker Strawberries & Cream Instant Oatmeal. We are working with feeding
therapists to help him learn the appropriate oral motor skills. He has a way to go
before chewing solid foods, but with the progress he has made in the last month, we
are sure it won’t be too long.
Thank you all for your continued prayers for Rees. We are truly grateful knowing that
they have helped miracles happen.
September 3 - Lots of Updates
Great Surgery – Miraculous Results
Rees had a g button surgically placed last Thursday to replace the feeding tube that
went into his tummy from his nose and was taped to his cheek. The g button goes in
his belly about the same place that his belly button used to be and straight into the
stomach. This procedure was not done sooner because of numerous complications
from his prior illnesses and surgeries. Now that those complications have resolved,
his docs thought it was a good time to try the button.
There was a chance of complications due to his multiple previous surgeries in the
same area leaving adhesions, but all went perfectly well.
The anesthesiologist had to carry Rees from the OR to the recovery room because
Rees sat or stood up in the OR table after the anesthesia was turned off. Yes, even
active after surgery. Once we were settled in our room. Rees took turns napping
with mom and dad all day. He would occasionally wake up during the day, look at his
iv, whine and go back to sleep. He perked up in the evening and woke up happy the
next morning when Dr. Bloss came to check on him. We only had to stay in the
hospital 24 hours.
When we got home Friday morning, Rees was completely back to his old self—
running around the house and playing. He actually seems happier than ever. He
wakes up not just happy but excited. He is making new noises and new faces. “I got
no strings to hold me down” from Pinocchio is the new theme song in our house.
Mom and dad are in heaven looking at his beautiful face without tape. For the first
time since his birth he has nothing on his face.
After a couple of days of taking it easy on his feeds, Rees quickly was back to his
normal feeding schedule, and then the most amazing thing happened. Rees all of a
sudden Rees loves to eat. Prior to the g button, Rees was eating 1, maybe 2, jars of
baby food a day. After just one week after surgery he is up to 7 jars a day. This is a
major blessing!
We can now cut his formula from 4 bottles to 2 bottles a day. The next step is
drinking. Rees now will not drink more than a sip at a time. We have an appointment
in October with the best-known pedi-swallowing therapist in Houston. We hope she
can help us turn the corner.
Final Poop Report
This summer we transitioned Rees from the expensive, hard-to-find elemental
formula Peptamen Jr. to run-of-the-mill Pediasure with Fiber. It was a slow transition,
but we finally got to 100% Pediasure. Again, we had unexpected, wonderful results.
Rees began to have regular poops. (Poor Rees, one day he’ll find out that his poops
were a hot topic of conversation and even posted on the web.)
When Rees’ intestines perforated when he was tiny, he had a surgery to take out the
damaged parts. During the resection, he lost a little bit of small intestine and a little of
the large intestine, including the valve that connects the two (ileocecal). Many who do
not have their ileocecal valve have chronic loose stool. This is why we are thrilled
with Rees’ new lump poops! Alleluia! The thousands of prayers for poop everyone
said 2 years ago are still reverberating. It is nice to check something else off the list
as resolved.
Amy Update
I recently had my 6-month check up and had an excellent report. The main number
that they watch is my BCR-ABL (which is very complicated but it is the indicator of the
percent of my blood cells that CML is detected). At first diagnosis I would have been
100%. Six months ago I was at 0.04%. Now I am at 0.01%. Yes, it is possible to get to
0.00%, which is the goal.
Summer Fun
It was great to escape the terrible heat this summer and join the Potts crew in North
Carolina at the Outer Banks. Rees has a few more flights under his belt. He is a great
traveler. He had a blast walking on the beach and playing in the sand and playing with
his cousins. Thank you GiGi and Paw Paw for the wonderful vacation.
July 3 - 3 Crazy Years
July 3, 2006 my family celebrated a triple baptism. I was discharged from my initial
leukemia treatment just in time to become a new godmother. It was surreal and
terrible telling my family of my cancer…AND pregnancy.
I would have never remembered the anniversary of my diagnosis if it hadn’t been a
holiday. One of the reasons I remember it was 4th of July was because Mark got me
these funny red, white and blue flowers with blinky lights.
My first anniversary of the leukemia diagnosis was right after Rees came home from
his 8-month hospital stay. My second was right after we moved into our new house.
This is my third anniversary and it is another milestone.
Ten years ago those diagnosed with CML (chronic myelogenous leukemia) were told
they only had three years to live. Without the introduction of the miracle pill Gleevec,
my time would be up and I would be wondering how to say good bye. Now with
Gleevec, I am expected to live a normal life with my precious son Rees and husband
Mark.
Our dear friend Alicia (a.k.a. Joaquin’s mom) is participating in Team in Training to
benefit the Leukemia & Lymphoma Society in the San Francisco marathon. Team in
Training raises money to help LLS with their educational outreach, leukemia
research funding, and financial support for patients.
LLS started playing a crucial role in our family three years ago. On top of helping fund
the research for my lifeline, Gleevec, the Leukemia & Lymphoma Society also helped
Mark and I during the scary time of my diagnosis with leukemia education and
support.
If you are able, please help the Leukemia & Lymphoma Society continue saving lives
and helping families by sponsoring Alicia—even a small donation helps! Thank you
Alicia! There are many other types of leukemia and lymphomas still in need of
miracles.
Click here to join the Team to fight leukemia: http://pages.teamintraining.
org/txg/nikesf09/ahartsfield
Love and blessings to everyone, Amy
P.S. It is much more fun to write about Rees who is now walking all over the place
and starting to be a sneaker—very cute. He has also graduated to regular formula
from his special formula, which is a huge accomplishment. Latest pics at www.
lonestarpotts.com.
I am so much stronger than I was at this point last year. My tummy troubles from my
medicine are much better and I feel more like a normal person. Other side effects
are slowly easing too. I continue to receive good check ups at MD Anderson.
More updates...Rees went to California in May to meet his great granparents. He did
amazingly well on the plane rides and was rewarded by getting to check out the
cockpit.
Thank you to all of you who sponsored Rees in his March for Babies. He raised over
$1000.
April 18 - Baptism, Walking & MARCHING
Rees is walking all by himself! He is still a little unsteady and nervous, but when
properly motivated, he can walk across the room. He can practically run with his
walker, so we have to watch out so we don’t get run over.
Rees started walking just in time to MARCH! We are thrilled that Rees will be able to
march on his own at this year’s March for Babies to raise money for the March for
Dimes, whose funding has been instrumental in medical research that saved Rees
and his other preemie friends.
The March for Babies is Sunday, April 28. Rees, Mom and Dad are marching with
Reesy’s friend Ellie whose twin brother Bennet did not make it home from the NICU,
and Sophia whose twin sister Lilly also is in heaven. Please support Rees in his
march. Even a small donation goes along way.
(Click the purple box above to learn more.)
Most of this month’s excitement is good excitement, with the exception of our all-
night ER visit for croup, which Rees disguised by laughing and jumping in triage.
Hours later after he fell asleep and the bad cough reappeared so the doc could
diagnose it. I was shocked to learn that croup was a serious and causes respiratory
distress—especially if you have had a tracheostomy and have a paralyzed vocal cord
like Rees—and that it isn’t an old-timey ailment. Rees recovered very well with the
steroids… just in time for his big day – his christening.
After a disappointing postponement in the fall, Rees’ big day final came. Rees was
officially christened. He looked like a prince in his white outfit. It was a joyous day
with friends and family. Father John Robbin’s (Rees’ cousins’ uncle) performed a
beautiful baptismal ceremony at St. Anne’s. We thank everyone who helped us
celebrate this very special day. Uncle Randy and Aunt Carrie are his proud
godparents.
Mark and I prepared for Rees’ baptism by going to the baptism of Joaquin’s little
brother Julian the week before, also at St. Anne’s. We have not been back to St. Anne’
s since the scary weekend that I was diagnosed with leukemia. Amy’s godson Aidan,
his brother Julian, and Mark’s goddaughter Camryn were baptized the day after I was
discharged from the hospital after my first leukopherisis treatment. It was the day I
had had to give my family the scary news about the leukemia, and also let them know
I was pregnant. It is a day we barely remember because we were numb. We are so
thankful to God that almost three years later, things are now heading in the right
direction for all the Pottses.
March 8 - Spring Update
Yes, we are in big trouble for not updating, but we are truly swamped. I feel like we
are juggling while treading water, and barely have our heads above water. But this is
all good, because we are doing more and feeling a little more like normal people. We
are gratefully nearing the end of RSV season and very thankful that we had no other
problems since the big set-back in September.
Rees is making strides with his walking. He just needs a little help and should be
completely walking on his own in about a month. He would now rather walk with us
holding his hands than be held. Luckily, Rees is tall enough now for mom not to have
to bend over for this form of locomotion. He needs to grow a little more to help relieve
dad’s back.
This week Rees had a swallow function study. They watch Rees swallow different
things via x-ray to make sure there are no signs of aspirations. Last time, he showed
problems with liquids. This time he passed! We are thrilled with this news, which
means we can more aggressively work on eating and drinking. This is perfect timing
as we start a new feeding therapy program at TCH. He is doing better with eating and
drinking, but still nowhere near enough for his caloric intake.
On Friday Rees had his first official hair cut at the kiddie barber shop. He looks so
handsome and grown up. Mom still misses the corkscrew curls, but nice to see his
neck again.
Mom had a really great appointment this week too. All of my CML numbers have
remained in the right place: cytogenic remission, plus my other counts are improving.
I have definitely been feeling better with more energy. I have caught myself using the
phrase “when I was sick”—so I guess that means I’m not sick any more. This was
the first time I wasn’t a nervous wreck going to my MD Anderson appointment, just a
little anxious—another sign of feeling better.
January 18 - Happy 2009
I can’t believe how long it has been since the last update…the lobbying effort for the
latest report got me to the computer today.
Rees got an early Christmas present a couple weeks before Christmas: 2 new
cousins. Rees is no longer the baby on either sides of the family. We can’t wait for
him to meet Ella Catherine in Austin and Lauren Crosby in Chicago.
On Christmas Eve Eve Rees finally got to see all of his 7 Featherston cousins together
for the first time. We greatly missed Aunt Cynthia, Uncle Bill and Aunt Amy who
stayed away because of germies.
On Christmas morning Rees surprised Mom and Dad by climbing into a chair and
standing to look out the window. (Yea! & Oh no!) He also stood up in the middle of the
floor by himself. He is still hesitant about letting go, but we think Rees will be walking
on his own in the next couple of months.
Paw Paw in Indiana had a stroke on Christmas Eve, so Mark spent the next week with
his family in Indiana. Fortunately Paw Paw has had a very good recovery and is back
driving and working.
While Mark was gone, Amy and Rees had a very bummer New Year’s Eve. After
enjoying a beautiful sunny day eating lunch outside with cousin Todd, I noticed Rees
only had one hearing aid. We immediately went back to the restaurant and the bus
lady said she saw it and thought it was gum then threw it away! We spent hours
meticulously combing through the trash, but it never turned up. I will not be able to go
to Niko Niko’s or smell Greek salad for at least 5 years.
Rees is doing much better eating baby food, now we are focused on drinking. We
started giving him juice with a spoon and last night he drank about an oz from a little
cup with mom carefully pouring in tiny sips. Our goal for 2009 is Rees to eat and
drink on his own and ditch the feeding tube.
We have slowly been decreasing Rees’ reflux medicine and he has now been off his
Prevacid for 1 week. This is an amazing milestone, as we struggled for so long with
this problem. We are continuing to give him a little water 30 minutes before he eats t
help with reflux—a fabulous tip from Sophia’s moms. For the first time ever Rees is
free of medication.
We recently had evaluations by Rees’ developmental pediatrician and PM&R doc who
help direct his therapies. They were both very proud of how much progress Rees has
made and how affectionate and happy he is.
This morning we went to cheer on the runners in the Houston Marathon. Congrats to
Uncle Bill and Aunt Cynthia for their 3rd appearance. We also cheered for the Team
in Training runners who were raising money for the Leukemia & Lymphoma Society.
Go Team! Here is a link to Amy’s friend Arlene’s Team in Training page – she annually
runs to raise money for leukemia research. Thank you and GO TEAM!
On that note, I am continuing to feel more like my old self as the Gleevec side effects
slowly lessen and become more manageable. I have my check up at MD Anderson in
March.
Cheers to a healthy 2009!
November 27 - Happy Thanksgiving & Birthday to
Mark
Seconds after my last update, I was hit with a stomach virus. All three of us got it.
Mom and dad were pitiful, but tough Rees went about his business playing. So it took
us a while to get the new pictures up.
After the stomach bug, mom has spent every spare moment calling insurance who
denied Rees’ RSV injections (Synagis) this year because he was over 24 months, not
taking into account any of his history or recent life-threatening lung infection. I spent
hours a day on the phone—99% of the time on hold, navigating the automated phone
tree to get to a live person who knew anything, getting transferred, etc. Rees’ doc
was also calling. It has been extremely stressful going into the heart of RSV season
without this added protection for Rees’ lungs.
We got a call on Wed afternoon, that Rees will get his shots next week! We will be
the happiest people in the clinic that day waiting for shots. I really can’t explain how
excited and relieved we are that our persistence paid off. We were so nervous about
going out and seeing others without the Synagis coverage.
Happy happy Thanksgiving from the Pottses!
Also happy birthday tomorrow to the amazing Mark! We love you so much!
November 10 - Great 2nd Birthday for Rees
We had an absolutely crazy week last week and didn’t get to update the site, but we
now can’t handle the numerous requests for pics and updates. So I am writing
tonight and Mark will do pics tomorrow.
October 30, Rees’ birthday, was a fun day. Ya Ya flew in from Waco and surprised
us. We made cupcakes and let Rees experiment. He was mesmerized at the candle
when we turned off the lights.
It was good we didn’t have his party on his actual birthday. I was weepy all day
remembering when Rees made his extremely early arrival. It is harder looking back
than it was during the terrifying moment. Then Mark and I had to have been washed
with God’s grace to keep us calm and focused---us and the amazing doctors, nurses
and RTs that saved our tiny Reesy. The over-the-top best moment was hearing that
teeny cry from our angel, when we weren’t sure what to expect. The cry was so faint
it sounded like it was coming from another room. Then the masked face that was
Mark said “Amy its him! Do you hear? He’s cryng!” Thank you God for our precious
son.
On Halloween little Clark Kent helped us pass out candy to trick-or-treaters.
On Saturday, we celebrated Rees’ birthday with several of Rees’ friends in the park.
It was quite a site to see so many little guys and gals the same size playing. We had
such a great time. We are so proud of all Rees’ buddies!
Rees has added more baby food flavors to his menu. His very favorite is chicken
noodle. We are also starting back to practicing with the sippy cup with thickened
water. Every few tries he does a really good swallow, but many times he smiles and
the water runs out.
Rees has been using his voice more and more. He is definitely trying to
communicate. My favorite is when he raises one eyebrow—he can do each side. We
have officially declared Rees a lefty (like his dad). He favors his left hand every time
when giving high fives, among other tasks.
Rees seems to have completely recovered from the terrible lung infection. The last
thing to go back to normal was sleeping through the night. The nurses/aids at the
hospital would wake him throughout the night for various reasons. When we cam
home Rees would wake up every night at 3 a.m. squealing for someone to play with
him. Last week was first nights to sleep all the way through.
The shingles are gone. I can now sit, stand, walk, lie down and wear clothes without
constant pain.
.
October 27 - Big Kisses from Rees
Rees is almost back to 100%—well, in spirits and activity—not in weight. Rees lost
almost 5 pounds while he was sick. He looks so thin now. His GI doc said he would
slowly put the weight back on. It is such a bummer when you work hard to pack on
those pounds. Rees also started back with a bang with his oral feedings this
weekend. Per doc’s request, Rees tried Gerber mac and cheese, and he loved it. We
think the feeding tube days are numbered.
We also checked in with Rees’ pulmonary doc last week. Rees had a chest x-ray and
his lung looked beautiful. He said Rees once again dodged a bullet with his recovery
from this infection.
Rees also had a check up with his eye doc. She was very please with Rees’ visual
responses. She thought he did much better than 6 months ago. She didn’t change
his prescription in hopes that his eyes keep improving on their own. If you correct the
vision too much, the eyes get lazy and will always need the correction.
Rees also saw his neurologist who thought Rees looked amazing for what he had just
been through with the serious lung infection.
Not that we have time for much else, when mom gets shingles, which is stress
related—ick! They hurt very much, but luckily the spots are easily covered so no one
–especially Rees—can be exposed.
Rees has started giving mom and dad BIG slobbery kisses. Very sweet—and messy.
We are getting ready for Rees’ 2nd birthday on Thursday! We can’t believe it! Reesy
(aka Clark Kent) is also ready for Halloween.
October 12 - Rees is Home!
We got to bring Rees home from the hospital on Wednesday evening. Here is a quick
recap: His fever stayed low enough to have a new line put in for anitibiotics (PIC line
in his arm) and the leaky central line in his chest was removed on Tuesday. On
Wednesday, the studies by the infectious disease docs on Rees’ bacteria strain
came back with the very few options for antibiotics. No oral antibiotics work on this
tough bug. Because he needs 21 days of antibiotics and we didn’t want to stay in the
hospital and get more germs….and because Rees has highly medically trained
parents…we could administer the iv antibiotics through the pic line and watch his
oxygen levels at home.
Rees was definitely ready to come home! He was standing up and trying to crawl out
of bed. Luckily the nurses didn’t see or they would have moved him from the open
crib to the cage version.
He came home on a tiny bit of oxygen (1/8 of a liter), but has been free of that tubing
since Saturday. He hasn’t minded the pic line port and mom has done a good job with
the antibiotic infusion on her wiggly patient.
We feel very blessed to be home so quickly from this serious hospital stay. When
Rees was admitted he could not breath from his right lung and now he is almost back
to his hold self.
We have a busy week with appointments this week. Some for follow-up from this
episode and some regular appointments with his specialists.
Thank you all for your e-mails! We haven’t caught up with replies yet. Thank you also
to my buddies Jack, Henry and Gracie for my cool balloons.
October 4 - Friday Late Night Update
Rees is returning to his old self. We’ve even caught a few smiles. He is sitting up and
playing with his toys most of the day with a couple of long naps. He is on ¼ of a liter
of O2—very little. We hope to be off oxygen and the pulse ox in the next day or two.
Any tube or wire that they take away makes it much easier for all of us.
Central line hell update: Great news. The infection under his dressing is MUCH better
today, so we don’t have to explore alternative options or veins. The drainage from the
nicked lymph node has slowed down considerably too.
Dad has been such a great nurse, for Reesy and mom. This week he has spent every
night with Rees at the hospital, so mom could get good sleep at home. It takes me
longer to catch up without good rest because of my chemo, so Mark has tried to
make sure I don’t get too far behind. I’m doing the weekend night shift—I wake up
anytime I hear a beep or anyone else comes in to check on (a.k.a. mess with/disturb)
Rees—so I’m up very late catching up on the computer.
October 2 - Graduated from PCU
Rees was kicked out of the PCU unit yesterday because he is doing much better—
lungs working and sounding better. We are now on the respiratory floor (14). Initially
the docs thought we would be out of here by the end of the weeks and could go home
on oral antibiotics. But, the antibiotic sensitivity studies did show any oral antibiotics
for this strain. Argg…this means he needs to stay in the hospital on iv antibiotics
much longer. Rees always wants to stand out with out-of-the-ordinary issues that
keep the docs and nurses on their toes.
Central line hell update: because of the lymphatic fluid draining from his central line
site, Rees has a fungal/yeast infection under his dressing. Wet dressings and
changing dressings too often are both infection risks, so it is a hard balancing act.
We have to watch it very carefully. We don’t want the infection to creep too close to
the site and risk a chance of it spreading to the blood, which would mean a month of
ampho-terrible (NICU nickname for the harsh antifungal for blood infections).
Rees is also feeling better. Yesterday he was awake most of the day and played with
his toys in bed. He is still a bit unstable, so we can’t go far---not fun to crash into the
metal hospital bed.
We are still waiting for his temp to stay down. This also helps determine how long
the antibiotic course will be.
The doctors are very encouraging. Rees has recovered as well or better than kids
with the same illness who started out with healthier lungs. Mom and dad are hanging
in there--we've had several nurses and doctors ask where we had our medical
training.
September 29 - Graduated from ICU
Well, we have had a very stressful couple of days, but Rees, our tough fighter, is
ahead of the curve on his recovery. It has helped that everything at TCH has run
smoothly and his care team has been wonderful.
We have been in the ICU at TCH since Thursday night--recalling all of the hospital lingo
and acronyms. The other thing we've been re-living is pic line/iv/central line hell.
Rees' miracle central line by Dr. Bloss started leaking fluid. It worked but was
mysteriously leaking. Dr. Bloss replaced it at the bedside without going to the OR. It
still leaked. Although it wasn't the best line, we had no other options and we (mom,
dad & Bloss) had to persistently insist that we use it and not risk trying for a very
dangerous, and maybe impossible, 6th line. The conclusion has been that a lymph
node was punctured during the surgery and was leaking lymphatic fluid, which
shouldn't cause a problem.
Rees did well with his chest tube, which suctioned and drained the fluid out of his
infected lung. This morning it was removed and he is much more comfortable. He is
still sleeping most of the day but when he is awake, his eyes are back to sparkling
and he looks more like his old beautiful self. He has figured out how to hold his
beloved giant green pacifier under his oxygen mask, but sometimes he prefers
chewing on the mask. It should get really interesting when he feels good enough to
sit, stand and climb in the bed with all of the wires and tubes.
A culture from Rees’ lungs shows a form of staff caused the pneumonia. We are
waiting on tests to tell exactly what is the best antibiotic is to treat it. If it is one that
can be treated with oral antibiotics instead of through the iv, our hospital stay will be
shorter because he can take it home.
This evening Rees was moved to the PCU, which is in-between the ICU and a regular
room. He may be here for a couple of days and then move to a regular room, then
hopefully be home by the weekend. We are very happy to be out of the hectic ICU. We
are praying for the families there who are faced with heartbreaking situations.
Mom and dad are pretty worn out. We’ve been taking turns staying with Rees at night.
Check this out----our super hero Dr. Bloss was in the paper today.
http://www.chron.com/disp/story.mpl/editorial/outlook/6026591.html
Doctor's dedication
On July 21, my grandson was delivered by emer-gency C-section when it was
determined that he was in severe distress. Within 24 hours, doctors discovered he
had a perforated colon, and surgery was performed by Dr. Robert Bloss. The baby
was left with a temporary colos-tomy bag. On Sept. 9, my daughter-in-law called
Bloss' emergency number when the baby's intestines began to emerge from his little
body. Bloss agreed to meet them at the closest hospital. Not only did Bloss beat the
family there, but he was waiting for them on the sidewalk. Bloss personally carried
him into the emergency room.
On Sept. 11, Bloss perform-ed a second surgery to recon-nect the baby's intestinal
track. As this young family weathered Hurricane Ike at Texas Children's Hospital, the
baby's condition worsened. Bloss was called and, disre-garding his own personal
safety, rushed to the hospital in the midst of Ike. Dodging a minefield of downed
power lines and swerving to avoid falling glass windows, Bloss came to the rescue.
In 29 years of active duty, I witnessed dedicated selfless service and personal
courage. Dr. Robert Bloss is the epitome of these attributes. For the life of my
grandson the words "thank you" seem inadequate.
RICHARD LEIBERT
colonel, U.S. Army (retired), The Woodlands
September 25 - Rees' Ambulance Ride
Rees got to ride in an ambulance today. His virus turned into a bad case of
pneumonia, so his doc sent us from the office strait to the ER with sirens and all. He
was sedated and put back on the vent because he was having trouble breathing
effectively. His right lung has fluid and puss of the lining of the outside of the lung
(better than on the inside), so he was in need of a procedure to remove the infected
fluid and puss and put in a chest tube. No less than 15 minutes after he was paged,
our super hero Dr. Bloss was there to help his buddy. Since the nurses tried about a
dozen unsuccessful times for a second iv, Dr. Bloss was also charged with placing
Rees' 5th central line. All of the normal spots have been used up, so this one was
going to be especially tricky.
After Rees was checked in to his private room in the ICU, he went to the OR. The
surgery was very successful. The line was in so Rees can get some heavy duty
antibiotics and fluids--and access to his blood, so no more poking. Rees did
amazingly well and is starting to show improvements.
The chest tube will stay in for about 3 days to let the rest of the goop drain out. We
are awaiting several cultures to find out about infections. He may be able to start
weaning off the ventilator in the next couple of days. His doc say he may get to start
eating his formula tomorrow, which is excellent news since we have worked very
hard in this area lately and don't want to loose ground.
We are expecting to be in the hospital for 2 weeks--the course of most iv antibiotics.
We just can't wait until they can wake Rees up. He has to be sedated while the
breathing tube is in, since he would certainly pull it out. Hopefully this is sooner than
later. We miss our smiling, active guy.
How did he get sick. Rees got a virus that turned into an infection in is throat and got
in his lungs. The docs said this is a normal kid problem, but only about 1 in 100 turn
into an infection. Poor little guy. Ironic day--this is Rees' 1 year anniversary from
getting off the vent at home last year. :(
Rees is in the ICU, so no cell phone calls. We should have internet access.
Mark is spending the first night and mom is going to try to get a good night sleep at
home.
Please keep our tough angel in your prayers.
Love, Amy
PS Happy 2nd Birthday to Rees' friends Cooper & Kayla
September 9 - Celebration for Amy
Mom got fabulous news today! I have reached Major Molecular Response from
Gleevec (bcr-abl 0.04%.). This is it! There are several levels of remission for CML and
this is the considered the highest level (<0.1%). Mark says this is the gold medal. It is
possible to attain 0.00% (Michael Phelps level) and that is our goal in the next couple
of years. I will remain on the same dose of Gleevec. Fortunately the icky side effects
are slowly decreasing.
I recently started getting B12 shots, which has made an incredible difference. I am
feeling dramatically better with much more energy. My B12 levels are low because of
some of the chemo side effects.
Speaking of the Olympics…Did you notice the black tape on the sand volleyball
champion Kerri Walsh? That was the same kind of tape Rees used on his belly and
back when he was working on sitting up on his own. I guess the US Olympic Team
heard of Rees’ successful training program. We are still going through Olympic
withdrawal at the Potts house.
We are so proud of Rees! He has made amazing progress with eating his baby food
the past week. He anxiously leans in to get to the spoon, bites on the spoon and
swallows all of the food with only trace amounts ending up on his clothes. We are
cheering and praying for continued progress. As soon as he can eat and drink
enough on his own we can pull the feeding tube.
Thank you to everyone for your constant prayers for us. It is overwhelming,
appreciated and WORKING!
August 27 - Summer Fun
I can’t believe how long it has been since the last update. We have been super busy.
We made it to North Carolina and had a fabulous time with Mark’s family. Rees did
fabulous on the plane ride sleeping most of the flight. He loved the beach, pool and
playing with his cousins. They were so sweet that they didn’t even mind him crawling
in the middle of the Uno cards during a game. We still can’t believe we actually did it.
When we got back from NC, we went to Rees’ Ya Ya’s family reunion so Rees could
meet his Port Arthur family. He is quite a trooper.
We also found a very sweet new babysitter who watches Rees in the afternoons so
mom can go to the museum. We are very relieved to find her.
Tummy update: Rees hadn’t had any reflux since November, then in June it came
back. We have been trying various doses and timings of Prevacid, Zantac and even
Maalox. It has finally settled down. We think the big factor has been H2O. Sophia’s
mom has been doing lots of reflux research and learned water can really help. This
news came just when the GI doc said we could start giving Rees water, so now he
gets an ounce of water before each bottle.
We went to see our fab GI doc at the end of July and Rees has done such a good job
gaining weight that he has gone down from 4 bottles a day to 3. This is a huge
lifestyle improvement! Now he gets a bottle of his magic formula through his feeding
tube in the morning before he wakes up and at night when he goes to sleep. Then we
hope he takes a long nap so he can have his lunch. He is now on the go at every
waking moment. He has had to start wearing the backpack that holds his feeding
pump because we can’t keep up with him. (He looks very grown up with his back
pack on.)
He is now walking with his toy walker, with a little assistance from mom and dad to
keep it from going too fast. He is also walking along the couch. We are so proud of
him. At his 6 month evaluation from his physical therapist, she reviewed the goals
she 6 months ago for Rees to have accomplished in August: reaching for something
and pushing up on his arms while laying on his tummy—talk about blowing goals out
of the water. Mom and dad are really ready for Rees to start walking—our aching
backs get worn out carrying our wiggly 26 pounder.
We are off to Waco for Rees’ first football game on Thursday night—look for Rees on
ESPN. Then we’ll be back on Sunday for 3 birthday parties: Adam & Grant (NICU
buddies) and Cousin Fi.
July 13 - Happy Belated Independence Day
We are all settled in our new house. The greatest thing about our new house so far is
the visitors. Cousins Thomas, Camryn, Julian and Aidan came right after we moved
in. On the 4th of July we had the most amazing party. The “fearsome foursome” of
the NICU came over. Our four families shared the most stressful and heartbreaking
times together, as well as many triumphs. It was the absolutely most amazing thing
to see Rees playing with his friends Ellie, Sophia and Joaquin. They are all doing so
well. Rees being in his territory made his routine rotation from toy to toy, and most of
the time paid no attention to who he was knocking out of the way to get to his toys.
Rees recently saw the developmental pediatrician who is tracking his progress. The
doc was very impressed at all of Rees’ improvements in the last 6 months. Rees’
developmental milestones are still closely tracking his “coming home age” at 12
months. He got high marks on his gross motor skills which includes his textbook 4-
point crawl. Rees’ goals the next 6 months is to work on his fine motor skills. (Fine
motor skills were much more difficult to work on before Rees got his glasses.)
We also had an appointment with our super hero Dr. Bloss, Rees’ surgeon. We
reviewed Rees’ dozens of scars from his dozen surgeries—kind of like a scrapbook
telling the story of Rees’ tough start. Because he is doing so well, Dr. Bloss
graduated Rees to social visits only.
Rees is now exploring. If we hear him calling for help, he is usually stuck…under the
ottoman, couch, tea cart, bed or chair. He can slide under low things, but can’t crawl
or get out. He is pulling up on everything and is starting to “cruise” (the therapists
term for walking holding on the furniture. He is now starting to use his toy walker if
someone helps him stay focused and not just play with the toys.
Rees is continuing to train for the gold medal in “Jumping In Place.” He recruits
anyone he can to help him as a spotter.
Rees gave his first tour of the museum last week to his friends Cade and Aaron.
Congratulations to Jack and Henry! They are new big brothers to Gracie. Congrats to
Joaquin too! He is now big brother to Julian.
Rees went to Waco this weekend. He had fun with his Texas cousins at the park and
at Ya Ya and Pop Pop’s house. This was a practice run to our big trip coming up next
week. We are FLYING to North Carolina. All of his Potts cousins are meeting Rees for
the first time at the beach. We are very excited.
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