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Olivia's Journey Update May 16th, 2008 |
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We're finally updating
Olivia's website after a whole year! So, she has turned 5 and 6 since
I've updated last, and she's in kindergarten!!! All is going well. She
had a good winter and had lots of colds and missed a bit of school, but
overall, she did a lot better than anyone thought! Last year before her
5th birthday, she was hospitalized for roto and then broke out in
chicken pox the day we were going to get discharged. She was there a
few more days getting some IV meds to slow up the spread of the chicken
pox since she was never vaccinated. We all kind of held our breath to
see how her liver would respond. She did great. She had a mild case
overall, and then she was kind enough to give them to me two weeks
later. I, unfortunately, did not have a mild case. I was sick, sick,
sick. I actually had to go the hospital! So, this year she's had lots
of ear infections because she had lots of colds, and after her 6th
birthday, she had her tonsils and adenoids out and ear tubes placed.
She's done great since then - no more ear infections. She is enjoying
school and making new friends and getting so big. She is in love with
every Webkinz there is, and she likes to color, play soccer and play
outside, now that our weather is getting nicer! We had a couple of
trips to Florida over the last year and she got to go to the beach for
the first time last spring, and she loved it. I didn't know if she'd
like the sand or not, but for some reason, kids just know what to do
when they get on the beach!! She's starting to ride her bike more and
hopes to get the training wheels off before the end of summer. Last
night, she read a book to me before we went to bed, and that was
awesome. I think it was part memory and part reading, but, wow, I can't
believe they read like that in kindergarten! Overall, Olivia is doing
so wonderful. Her school has been wonderful, and provide OT and PT for
her each week, and she is in a looping class with two teachers, a
teachers' aide and a classroom aide. They take certain precautions with
handwashing and sanitizing with all the students. She will be in the
same classroom next year with the same teachers for first grade too. It
was the perfect mix for Olivia since she never had day care or
preschool. However, it took a few weeks for the crying to stop and
having her pryed off of me and Bill when we took her to school! She
still has monthly labs drawn, and her EBV was high last month but we're
hoping that was from the infected tonsils and adenoids; we just had
those labs drawn and are waiting for the results. So, in a year's time,
she was hospitalized for the roto and pox, then dehydrated on Father's
Day last year and got some fluids in the ER, and had out-patient surgery
for her tonsilectomy last month. She has come so far, it's remarkable.
We're due to go to Pittsburgh for our annual scope, but they haven't
contacted us, so we'll probably be going in June. |
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Olivia's Journey Update January 31st, 2007 |
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Happy New Year. We hope everyone had a
warmer January than we have!! Despite the temperatures, Olivia is
doing great. We haven't updated in a long time, as usual. The most
exciting news we can say is that her g-tube was removed a week ago
Friday. She's had it since she was about two weeks old. It's so
good to say that she finally has nothing attached to her! However,
the two weeks before she had it out, Olivia had c-diff and she was
not feeling well at all. Lots of fevers and lots of diarrhea. With
lots of trips to the pediatrician's office, pharmacy, and hospital
out-patient lab, we didn't have to be admitted for any reason! She
lost a few pounds, but is slowly putting them on again. Her labs
are still monthly and they've been fine. It's taken her a week or
so, but we can give all her meds in her mouth without a struggle!!
All these "first-times" are so long overdue - they're always a
challenge! Another first time thing was a little over a month ago
when we took her ice skating; well, actually "boot" skating, but she
loved every second of it!!
We had a great Christmas this year.
Santa was good to her and Olivia got lots of stuff from everybody,
and still likes everything she got - especially her Diego doll!!
We're going to Florida in about 5 weeks to see some friends of ours
for a week, and we'll get to take her to the beach for the first
time, and we are going to surprise her with a day at Magic Kingdom.
She is going to be very excited when we tell her!! So, we're
looking forward to that. A couple weeks after we get back, she'll
be turning 5! She says she wants "Go, Diego, Go" for her theme.
We'll see if she changes her mind. She probably won't though,
because he is an animal rescuer, and she thinks that is the coolest
job you could have!!
She's still getting her OT, PT and
Speech therapies a couple of times each a week, and those are going
great. She's starting to enjoy writing letters and her name, and
drawing pictures. We will have her "school" meeting in June with
our school district, and we're going to discuss tutoring at home and
continuing her therapies at the school. We'll see how it goes. It
would be great to send her to kindergarten, but not so great for her
to miss half the year because she'd be sick. It's not worth the
risk right now. She has a new friend named Victoria that we met at
the library story hour in the fall, and we try to see her and her
Mom once a week for a play date, and she's really enjoying it. They
get along so well.
Well, that's about it for now. We'd
like to send some special prayers to our friends Caleb, Destiny and
Hannah. They're always in our thoughts. Take care everyone. As
always, God Bless our donor's families.
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Olivia's Journey Update August 18, 2006 |
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As usual, it has been a long time since we've updated and added new
photos, but, at last, we're finally doing so. We've had a great few
months with summer here and Olivia enjoying life without her ostomy bag
and central line! WOW - what a difference those changes have made in
our lives. She loves the bathtub now and she likes going in our pool,
and her adjusting to having to go to the bathroom very frequently,
hasn't affected her a bit!! She's eating really well, pretty much all
day, and she has so much energy! Sometimes we watch her ride her big
wheel or run down the sidewalk and can't believe it's the same girl from
a year and a half ago. We're at once a month labs, and for the last two
months they have been great. She continues to get her OT/PT/Speech
therapies at home, and they are going so good. We put her into a
preschool story hour for a five-week session at our public library and
she absolutely loved it and did great. It was a smaller class, and
you'd never know Olivia hasn't been around kids most of her life. We're
going to do the fall class through Christmas, but will see how that goes
with all the viruses and colds, etc. that the winter will bring us! We'd like to wish our sweet little friend Destiny a happy 4th birthday, and we hope you enjoyed your day. We just had a visit from Destiny and her Mom, Christie, and we had a wonderful time. We were so glad they made the journey up to NY. I know Christie packed for just about a day with all of Destiny's medical supplies and pumps and stuff, and it's so stressful to get everything together sometimes, that you almost think that the trip isn't worth it! But, Christie, thanks for making the effort and making the trip. It was certainly worth our while. It was really great for everyone! Olivia and Destiny had so much fun playing. They really enjoyed each other's company and Destiny is doing so good and getting so big. I hope they get back to Texas soon - 3 1/2 years is an awful long time to be away from home. I'll be putting some recent pictures from their trip on our website soon, as well as Olivia's Make-A-Wish trip too!! Our friend Justin made his way into heaven about a week ago, and we'd like everyone to say a special prayer for his Mom, Lisa, and her family. We will miss him. |
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Olivia's Journey Update May 20, 2006 |
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Well, it's been a busy five months in
the transplant world and we're finally updating Olivia's website.
However, we'd like to send our deepest sympathy to the families of
Markelle Frei and Ally Thompson, two beautiful girls who went to
heaven earlier this year after their lifelong battles. Not a day
goes by that we don't think of their families and say prayers for
them.
We'd also like to send some special
prayers to our friend Caleb who is fighting a tough battle back in
his home hospital in Texas and is awaiting a second transplant of
all four organs, the same transplant Olivia received a year ago. He
is quite sick and could use everyone's prayers that his family will
get their phone call soon.
Lastly, we'd like to congratulate our
friends Kara and Grant Marshall, whose son Logan was transplanted a
few years ago, on the birth of their beautiful and healthy daughter
Avery. Best wishes to you all!!
We got here in Pittsburgh on Monday
morning for a scope to get Olivia ready for her closure surgery two
days later. She had surgery on Wednesday afternoon to reverse her
ileostomy and so far, she is doing great. She finally got to eat
today and she was up and at it yesterday afternoon feeling really
good. The surgery went well, and, unfortunately (and fortunately I
guess), they removed her central line during the surgery, because
minutes before she was to go to the OR, we were waiting in the
holding area, and her broviac snapped right in half and broke!
Well, it didn't just snap for no reason, of course. This broviac,
that has lasted almost 4 years, which is pretty much unheard of in
the transplant world, was due to come out in a month or so after she
was closed in case she needed fluids or other meds, etc. It just
slid off my hand in an instant as I was lifting her off the potty,
and it got stuck under the edge of the toilet seat as I picked her
up and snapped like a twig! On the floor was the rest of her line
which was running IV fluids and the clamp. I really couldn't
believe it had happened! So, I pinched it off to stop the blood
from coming out and one of the OR nurses got hemostats to clamp it,
and that was that. They paged the doc in the OR and he said they
would just remove it and see how she does! So, she has an IV in her
right hand to get her IV fluids and a couple runs of electrolytes
while we're still in the hospital. It kinda stinks because they do
blood draws every day and she has to get poked from hereon out! We
should be getting out tomorrow or Sunday if all continues to go
well. She's on the potty every hour, but that's okay - that bag is
gone, and we really can't be happier about it! All she has is her
g-tube and, hopefully, she will have that removed within a year or
so. She's had these things as a part of her life from the age of 3
months and 6 months, so it is just plain strange to not see them
anymore. I still can't believe they are gone! And neither can she
because this morning we were in the bathroom by the gift shop in the
hospital and she had to go really bad and afterwards I was pulling
up her pants and she said "is my bag full, do you need to empty
it?"! She just looked at me really funny afterwards and we both
just smiled and then she remembered that it's not there anymore!!
So, Olivia turned 4 at the end of March
in Disney on her Make-A-Wish trip, and it was awesome. She had an
absolute blast. She is the healthiest she's ever been, and that
made this birthday even more special to us. We can't thank the
Make-A-Wish Foundation and Give Kids the World Resort enough for
everything they did for our family to make this trip so great. We
will be putting some new pictures on the website soon. We captured
quite a few memories on camera as you can imagine! I could go on
and on about how great it was, but everyone knows how great Disney
is!!
Since our last update, Olivia has maybe
had a cold during the winter and just got over a line infection a
few weeks ago, which only put us in the hospital for part of a day.
She's keeping busy with all her therapy schedules during the week
and getting bigger and smarter everyday it seems. This second
transplant, as hard as it was for those two years to know she had to
have another one, has been an absolute miracle. She has far
exceeded a lot of people's expectations, because the reactions from
everybody here in Pittsburgh this week says it all. No one could
believe how well she looked and how much she had grown!
Unfortunately, there are a lot of families whose children were
transplanted around the same time as Olivia's first surgery back in
2002, who need second multi-organ transplants now, and boy, our
hearts go out to you all. It is, indeed, heartwrenching to have to
think about it all again, but, as we know, what choice do we have?
Someone once said that it's like this game that just won't ever
end. You just keep getting sucked in more and more. Gosh, it's so
true! Olivia had a very bad experience the first time around, but
look at her now. This is how it was supposed to be and it finally
is; it just took us a little longer. I hope she can be an
inspiration to a lot of people, because these kids are so much
tougher than us! That's all they now how to do is fight for their
lives, ya know?
Well, we will update again soon and let
you all know how Olivia is doing. We'll be staying here in
Pittsburgh for a bit and then hopefully home before Memorial
weekend. Our prayers go out to Justin and Nicholas, as they are
re-listed too, and to Destiny and Christie - we're always praying
for you. Take care everybody and thank you all for checking up on
Olivia.
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Olivia's Journey Update January 09th, 2006 |
| Happy New Year everybody! After a busy (or lazy!) two and a half months, we're finally updating Olivia's website. Olivia has been doing well and we've made some great progress with her tube feeds and fluids over the last month. We went to Pittsburgh back in mid November just for a day for clinic and scope and all was well. They switched her tube feeds to bolus feeds throughout the day and took her off a few meds. That was great. As of this week, she is now on 3 and 3 of Prograf and has been coming down on that over the last two months too. No signs of rejection and her intestine seems to be working pretty well. She's gained some weight and has grown taller. She's eating three pretty good sized meals a day and has lots of snacks and as of this week, we are only doing tube feeds every other day, as well as fluids every other day too. Her mag level seems to be leveling off, so hopefully, she'll soon get off the little amount of fluids she's been on. We only give her 8 ozs. of formula for her tube feeds, so she's really not getting much of that either. It will be so awesome, to get off of those in the near future too. We were in the hospital here back in November before Thanksgiving with a line infection, but she got over that quick and has been doing great. We had a wonderful Christmas and Olivia really got the meaning of Santa Claus and his reindeer (especially Rudolph) and was very excited about two weeks before Christmas right up until the day! Our Make-a-Wish trip is all set and we're leaving on March 26 for Disney (which is Gramma's birthday and her and Papa are coming with us!!) and we come home on the following Saturday which is April 1. Olivia can't wait to see Bear and JoJo and Mickey and Minnie, and every other character, and we can't wait to see her enjoy herself. It is going to be so great. She also will turn four at Disney, and I think that just makes the trip extra special. Things have been going well enough that I, after 3 1/2 years, have gone back to work part time for Independent Health, an insurance company, for two days a week, Monday and Friday. I started just after Thanksgiving and I just love it. It is a great place to work! My mom watches Olivia every Monday and Bill doesn't trade and watches Olivia on Fridays. Bill has also been offered a job with AIG to be a financial advisor to work out of the house. He will make his own schedule and meet with clients as his convenience. So, he's studying for all his exams and will have a few weeks of out-of-town training in the next month or so and will hopefully be doing that soon. He is also really excited about this opportunity. It's really great to start to get back to normal. We're due back in Pittsburgh before our trip for a check-up and scope, and in the late spring, after Easter, we're hoping to have Olivia's ileostomy reversed and will spend a week or two in Pittsburgh for that. Hopefully, those will be the only two trips we'll have to make for a while! We also put some new pictures on the website as well, so please check them out! Take care everybody and have a healthy New Year. |
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Olivia's Journey Update October 24th, 2005 |
| Hello everyone. Sorry it's been so long since we've updated again! Olivia has been doing really well. We've gone back to Pittsburgh a couple of times in the last month and a half for scopes and clinics and all looks good. Found out she's allergic to egg whites and milk, and that would explain the couple of crazy rashes/fevers she's had in the last few weeks. Her labs have been good and her EBV numbers came down last week to 11,000 from 16,000, so we're hoping that we can stop the weekly IVIG treatments and twice a day Gancyclovir, but we'll see what ID says in Pittsburgh. They had to increase her FK dose again, so now she's on 11 mgs a day, which is a lot, even though her levels come back around 10-12. Don't really understand why that is though. She had a bit of a growth spirt within the last month and grew one and a half centimeters, even though her weight stayed the same. So, we're really excited about that. We had an incredible benefit on Sept. 17 at the golf course we belong to, and it was so awesome. The turn out was incredible and the support from Grand Island was amazing. Thank you so much to the "committee" of hard working women who put this together and to all the people who volunteered, donated baskets, and worked so hard to make it such a great success. We were overwhelmed the entire day, and feel so grateful to have people in our lives that care so much about our family. We also want to thank our families for their ongoing support. We hope you know how much we appreciate it. We just got back from Syracuse for the weekend where Bill's brother Bruce got married on Saturday. It was a great day and we wish Bruce and Maria nothing but the best. Congratulations and we love you guys!! Olivia had so much fun at the dinner afterwards. She got to play and dance with the other little kids. It was so great to see. Olivia's been keeping busy during the week with her therapies and doing great with all of it. A few weeks ago Make-A-Wish came to our house and we'll find out if Olivia will get her wish to where else? Yeah, Disney!! We hope to take her for her 4th birthday in March with her gramma and papa too! We'll keep you posted on that! We'll go back to Pittsburgh every month for now and if all continues to go well, she will have her stoma reversed in April. That's the plan anyway! That will be so great to say goodbye to that ostomy bag!!! Her output is pretty good and hopefully between now and then it will get better, so it will be an easier transition. She'll have had a bag for about 3 1/2 years so it will be interesting to see how Olivia will react when it's gone. She's so used to it that at night before she goes to bed, whichever stuffed animal she brings to bed to sleep with, she pretends to empty it's bag, then change its diaper and hooks it up to its food for the night too. It's really something! Well, hope everyone is doing well and thank you for checking in on us. We hope to do more frequent updates from here on out!!! Take care and God Bless. |
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Olivia's Journey Update September 7th, 2005 |
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Hello everybody. Sorry we haven't
written in a while, but we've been busy since we've GOTTEN
HOME!!!!! Yyyeeehhhh!!! It's so good to be home. We drove back
home last Thursday night, September 1, and so far so good. We had
clinic that afternoon and got the thumbs up from the docs, and
pretty much left right away! The week before that though was good.
We took Olivia to see the Wiggles concert and she just adored
everyone on that stage. It was a lot of fun to see her have so much
fun!!! Olivia's gramma came down a couple days and played lots and
lots with her and Olivia just couldn't get enough of it! Thanks a
lot Mom for coming down. We went to dinner with some new friends,
Sarah and Ryan, that we met back in June after their daughter, Abby,
also had a transplant, and are staying at the hotel also. We will
certainly miss their company and are saying extra prayers for them
so they can get home to California soon. Olivia ended up "passing"
the reflux test a couple weeks ago and we got to put her button back
in in place of the g/j tube, so she's feeling much better without
that tube hanging, that's for sure. She's doing fine with her feeds
going right into her stomach, and her output is down quite a bit, so
we believe the adenovirus is subsiding. All her labs that were
drawn earlier this week looked good, and we had our first GI
apointment here in Bflo. today and that went well. Also, today,
Channel 2 came to our house and did a follow-up story from a couple
years ago during her first transplant, and it will be airing next
Tues. night on the 5 p.m. news, and then again on Wed. morning
during the DayBreak show. The group of women who are putting this
wonderful benefit together for Olivia are also going to be on the
DayBreak show live that morning at about 6 a.m., so be sure to watch
it. We can't thank everyone enough for all their hard work and
dedication for Olivia's benefit, and all the donations received. We
are amazed with our community and are proud to have people like that
in our lives.
Since we've home these last 6 days,
Olivia has been getting re-acquainted with all her toys and books
(it's like Christmas again for her!) and has been playing a lot
outside, walking her dolly, playing a little bit with her Elmo
sprinkler, taking walks and bikerides with us, and just really
enjoying herself. We feel so blessed to get to this point with her
after all she's been through. Take care everybody.
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Olivia's Journey Update August 26th, 2005 |
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Hello everyone. Olivia's scope showed
from Tuesday that she still has adenovirus in her intestine and that
it really hadn't changed from last week, although her output is down
a little bit. No rejection. We can't leave Pittsburgh until this
virus is cleared, so we have another scope next Tuesday morning;
hopefully, it will show just that!! We also have an upper GI
scheduled for Monday morning at the hospital to see if Olivia's
reflux has improved. We're hoping to remove her g/j tube and put in
a mic-key button to give her tube feeds and meds. This g/j is
really bothering her day and night and we haven't seen any signs of
reflux whatsoever with her drinking and eating, but we'll see what
the test shows. If it's good, they'll take it out in clinic and
pop the button in!!
We had a great weekend last week with a
visit from Olivia's Aunt Shelly. We had lots of fun and Olivia
really kept Aunt Shelly on her toes!! We did some sightseeing and
showed her the City, Station Square and the Carnegie History Museum,
which is very cool. Thanks for the vist Shel - it was really great
to see you. Last night we took Olivia to the Pirate's game, and
made it all nine innings no problem!! She had so much fun. She got
hugged by the Pirate's parrot, ate ice cream and popcorn and really
enjoyed the atmosphere!! The ballpark is beautiful and it was a
great night.
Well, we'll update next week after her
appointments and hopefully have good news that we can get home
really soon!! Take care everybody. Thank you for your prayers and
well wishes for Olivia.
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Olivia's Journey Update August 18th, 2005 |
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Hello everybody. We got a call this
morning from our coordinator and she told us that Olivia has some
activity in her bowel and adeno virus, according to the results of
her scope and biopsies yesterday morning of her intestine. Adeno
virus is something the transplant population gets quite often, and
it hits the small intestine pretty hard giving the kids severe
diarrhea, sometimes fevers, throws their electrolytes out of whack
and causes dehydration. We suspected something was up with Olivia
yesterday and more so last night because her output had become so
high, a little more than doubled which is unusual. We're happy it's
not rejection. Hopefully, she'll get rid of this within a couple of
weeks and we won't need IV fluids for her electrolytes or need to go
to the hospital. However, we were hopeful to go back home to
Buffalo this Friday, but that's out of the question now. Maybe in a
couple weeks or so. Keep your fingers crossed!
Otherwise, Olivia had another great
week. She got a visit from her Aunt Teresa and Uncle Joey and we
all had so much fun. We took them to Station Square on Friday
night and we had a great time. Not only was it so good for Olivia
to see some familiar faces again, it was really great for me and
Bill to have some company too. Thank you so much you guys for
coming to see us this past weekend. We really appreciated it. On
Sunday, we went to Destiny's 3rd birthday party and Olivia had lots
of fun. She really enjoys seeing Destiny and playing with her.
Happy birthday sweetheart!! We took Olivia to Kennywood amusement
park on Monday and she rode lots of rides for the first time and she
did great.
We have clinic tomorrow and hopefully
things will go well and we'll get a game plan for the next week or
so. Take care everybody and we'll update you all soon again.
Love Roxanne, Bill and Olivia.
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Olivia's Journey Update August 9th, 2005 |
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We're happy to report that Olivia has
been doing well and hasn't been back in the hospital for any issues
since we left on July 28. We've been keeping busy and having fun,
doing lots of things inside to beat the heat! We took her to the
zoo and she loved it, and a couple museums around the city in the
last week too. Olivia had the pleasure today to go to her friend
Destiny's house and play with her and have dinner too. It was a
great time - thanks Christy!! Des looks awesome!! We'll get
together real soon again! We have clinic on Thursday and we hope
all her labs are status quo; however, her EBV numbers jumped from
17,000 to 94,000 last week, and we're not really sure why. Her
Prograf level was over 18 at the beginning of last and dove quickly
a few days later, but not quite sure what's going on with this
virus. She's having her weekly IVIG treatments and has her IV
medicine on board each day, but it doesn't seem to be doing the job
right now. Hopefully, when we check it again next week, they will
have come down. Otherwise, she's getting stronger, walking around a
lot and coming out of her shell with a lot of people at the hotel!
We had the pleasure of meeting the
Pinskey family who just left to go home yesterday (yehhh!!) after
their son, Zach, had a liver transplant a couple weeks after
Olivia's transplant. We wish you all nothing but the best, and we
say extra prayers for Zach that he stays healthy and gets stronger
each day. Thanks for playing lots with Zach - you're a great
kid!!! "Queen Olivia" loved every second of the wagon rides!!! We
hope to talk to you all soon!
Take care everybody and thanks for all
your messages on our guestbook and special prayers for Olivia.
Love Rox, Bill and Olivia
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Olivia's Journey Update July 29, 2005 |
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We've been out of the hospital for an
entire week and enjoying every moment of it. We've had lots of fun
and have been keeping pretty busy. Olivia is doing very good. We
had two clinic appointments and a scope this week, and all went
well. At yesterday's clinic, it was decided that she'll have once a
week labs and once a week clinic visits and still scoped once a
week. That's some big progress right there!!! She's only on IV
fluids for 2 hours a day and her tube feeds for 16 hours a day.
It's so nice to have her "unhooked" for most of the day. Her EBV
numbers are coming down but we'll find out what they are in a week
or two and hopefully get off some IV medications for that.
We spent lots of time with Cindy and Mak
and Misty and Emily this week. Went shopping to Grove City for a
day, had dinner with them yesterday because they left the hotel
today, and just been hanging out with them at the hotel here and
there. It was really great for Olivia to see other kids her age
running around and doing "kid" things that Olivia really hasn't done
yet. Olivia did splash her feet in the hotel pool today for about a
half hour and loved it. That was the first time she wasn't afraid
of water!! She was soaked from her waist down. It was great!!
We continue to say our prayers for all
the transplant families and children and hope they continue to do
well and stay healthy. We send our extra prayers to Hannah and her
family and hope that she gets back to her old self really soon, and
to Cory and his family to stay strong.
We greatly appreciate everyone at home
who is organizing a wonderful benefit for Olivia. We are lucky to
have you as friends and to have your continued support. Thank you
all from the bottom of our hearts.
Olivia wishes her Uncle Joey and Aunt
Shelly very Happy Birthdays and hope they each had great days. Love
and miss you guys.
Take care everybody and God Bless.
Bill, Roxanne and Olivia
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Olivia's Journey Update July 23, 2005 |
| Well this is our first update for the new website and we are happy to say Olivia is doing good. Olivia was re-transplanted on June 3, 2005. She received a stomach, liver, small intestine and pancreas. On June 10th she was stable enough to leave the ICU and move to the floor. However, two days later we were back down in the ICU for critically high sugar levels. After 3 days with an insulin drip, she was once again stable and moved to the 7th floor. After only five weeks, Olivia was given the OK to leave the hospital to live at the local Residence Inn. We still could not believe how quickly Olivia had recovered from the transplant. We spent our first day getting things organized at the hotel and reviewing the 16 or so meds, IV fluids and tube feed schedules we would be giving her throughout the day. The next two days we just relished in the fact that she was out of the hospital and doing pretty good. We went to Target and Giant Eagle to stock up on food and supplies for the hotel. On Monday night and Tuesday night Olivia hadn't slept very well, hardly at all. She had no symptoms of not feeling good, so we just watched her. By the time early Wednesday, July 13th arrived, Olivia was not breathing very well at all, and we rushed her into the ER. The x-ray showed that her right lung was filled with fluid. They admitted us to the floor, and for the next two days she was on 3 liters of oxygen to help her breath, which she was having a hard time with. After a consult with pulmonology, a bronchoscopy was scheduled for Friday to wash out her lungs, check for viral infections, and look at her airway and esophagus. It was later determined that Olivia had aspirated fluid from her stomach into her lungs. The cause was severe reflux. Olivia was moved from the OR to the ICU and was intubated for the next few days due to her weak airway during the procedure and the condition of her lungs. Early Monday morning, she was extebated with great success and on Monday evening, Olivia was once again stable and moved to the floor. The next couple of days Olivia recuperated and so did we. The doctors decided to remove her Mic-Key button (g-tube) and replace it with a G-J tube to feed her intestine directly and bypass the stomach because of the severe reflux. We were discharged on Thursday afternoon to the hotel and we hope to stay here for a while. We have clinic Monday and Thursday and a scope on Tuesday. We will update you all soon again. We thank everybody so much for checking in on our little angel, and we also thank everyone for their thoughts, prayers and well wishes for Olivia's health. We certainly do appreciate them. Take care - Roxanne, Bill and Olivia. |