Karter and mama will be admitted Sunday AM... We are all hoping that by pulling Karters NG and letting him build up his hunger makes him want to eat.
Mak and Daddy will head back to the Loops again on Monday morning. :o(
Pls send (as always) all the positive "oral eating" vibes u can for this lil monkey. Really hoping this works...
We had our consult with GI at noon, and placement looks near impossible for our lil man, as he does not have a whole lot of space to place one. -Of course. This trial Ng pull is our only hope!! Keep our fingers crossed Team K!! Much love!
Karters latest bloodwork shows that his heart is handling his oral meds wonderfully! Though we think it may be contributor to him having this horrid cough...
All in all we will take the cough if his heart is doing ok... I am still having the team look into this though! There are plans withing the month to meet with the docs from The Stollery as they are coming to BCCH To check in on him, as they have not seen him since he was first listed (almost a year ago now). Then we will try to have a GI consult in regard to him having a g tube placed, as well as possibly (dare I say it...) ridding him of his PICC line! This gets me uber giddy and excited, for him to maybe start experiencing REAL baths and some fun in the sun!! Keep ur fingies crossed!! ðŸ’šðŸ’šðŸ’š
We have finished a trial down on the coast with Karter off his Milrinone (his IV meds) and is doing fairly well! We will be keeping a close eye on him to make sure he doesn't crash, so happy to be taking my boy home after almost 10mos of living attached to IV lines!! It is going to be absolutely amazing to see him enjoy home, his sissy, and his bed without lines!! Thank you all again, for all ur love and support we couldn't keep on trucking without that extra push from all of you! â¤ï¸â¤ï¸â¤ï¸ðŸ’šâ¤ï¸â¤ï¸â¤ï¸
Wow, it's absolutely amazing what being home can do! So thankful that we were able to come home with him on Milrinone, I couldn't imagine him still being inpatient and being stuck in a bed majority of the time! Because we have been home for so long, Karter is now walking and I couldn't be happier!! Being home as a family truly is a blessing!! And of course having all of you support and continue to follow our lil warrior is an amazing gift!! Thank you!! ❤️❤️❤️
Hey Team K!
Did you know that February is Heart Month!?
Feb 7th thru the 14th is CHD awareness week as well!! Help us spread awareness and sport your red for Karter and all his lil heart warrior buddies!!
Thank to everyone for their continued support, we love you all!! Now go rock your red! ❤️❤️
Did you know!?
Cannot believe we are coming up 7 months of waiting for Karterbutts perfect lil heart. I feel it is close though, and I'm not quite sure if that's what's keeping me going these days! I truly feel it should be any day, hopeful or not!
We had his visit with clinic Friday, and all things considered he is doing very well!! Clinic visits may end up slowing down, as of now he can only accept his blood type, so bloodwork will slow as well!! Thank goodness! We all just gotta keep on keeping on, and together, we will!! Just a short sweet update for you all!! Much love as always, and thank you for all your continued support and shares!! ❤️❤️
A video montage that was made for a fundraiser held for Karter, hosted by our family! An amazing friend of theirs put this together for it, I don't know if he realizes how special this video is to us. Thank you! ❤️
Brings me to tears every time! â¤ï¸
I have a huge apology to send out to everyone! I haven't been doing the greatest with updating Lil Butts Gofundme page and I feel extremely guilty...
Things at home keep me extremely busy, amongst all the bumps along this Journey and the amount of time we have spent in and out of hospital lately. All in all Karter is doing fairly well all things considered! He would be doing much better if we had gotten an extremely important phone call though..
Well, another year has gone by, and Christmas has found us again... Thankfully and gratefully we are home for it! Together.
I want to thank everyone who has continued to contribute to Karters Journey, we are constantly overwhelmed with the amount of love and support you all have shared, and again can never quite express enough thanks. No words can amount to how appreciative we are! From our family to yours, We wish you all this best this coming New Year, and The Merriest Christmas!
Ps I will try to be more efficient in updating this page!
Omgoodness!! We are over half way there!! Amazing, u are all angels! We are so grateful for each and every one of u that continue to support us in Karters Journey!! Thank u, thank u, thank u!!
Sorry for the view friends!! Grandmas first crack at filming with the ipad!! Hehehe
Sibling love! ❤
Mak sharing some sugar with her baby bro
Good Morning Team Karter!
Sorry I have been so terrible at updating lately! Mamas kept uber busy with both Karter and his big Sis!! Nevermind the numerous appts etc!
Karter is stable and doing well all things considered!! He's lovin life at home, but most of all loving the fact that his big sissy is always making him smile. It is the most wonderful thing seeing how intrigued he is by her. She is such a great big sister, she has been helping mommy give Karter his meds as well as flushing his NG! I think we may just have a future doc on our hands! Excellent!! Hehe
She (for the most part) is so involved!!
He is gaining weight nicely, and doing well eating solids... He sits unassisted fairly well now (we have been working hard) but still needs mommy to be around him for when he gets tired and tumbles over. But he is a lot further along than he was just a few short weeks ago! I'm so proud of him and his will to succeed! We are still trying to work on getting him to put weight on his legs and arms, but that is getting a lil better everyday too! Practice makes perfect, right!? We'll get it!
Excited for cooler weather, as summer comes to a close. It's been tough keeping him barred inside from the heat... Anticipating the cooler temps so we can get out for more walks as a family.
Anyhow my friends, just wanted to keep you all in the loop, with a lil update!! Will try to be more efficient on posting!!
For more regular updates, pls visit his FB page! Info is listed here somewhere!! Lol
Thanks for hanging in there with us, keep praying that we get "the call" much sooner than later!!
Much love, I wish you all enough!! ❤
I know this waiting is going to be one of the toughest things to go thru, and it has been already. I am so impatient. To think, we could be waiting for a long time really frightens me. When will we finally get to live our newest normal? It saddens me that Karter has already missed out on so much at his age. I think back to all the firsts we had with our daughter at the same age. He will end up experiencing everything for the first time when he's much older. I can't help but feel robbed of his babyhood, as well as himself being robbed. We (particularly me) yearned for all those baby things so badly, and unfortunately we haven't been able to experience them the same way you normally would with a new addition. I am beyond grateful for him, and would do this 1000 times over just for him. I just wish things could have been different for him from the beginning. I love him soooo much! Keep fighting baby boy, I hope we get your phone call soon!!
To all who continue to follow, fight, and pray along with us, thank you....
With a lil bit of effort getting his cords and pumps outta the way, Karterbutt finally got some much needed and well deserved time in his jumper!!
Back in business!
Hey peeps!! Been a while since I have been on!! Still tryin to get settled here at home with everything!! Karter went for his follow up at Children's and we are good!! Whoop whoop!! I've been managing his Milrinine on my own, and doing alright with it!! Thankfully!! Lol hangin in there and tryin to be patient as possible waiting for the call!! Thanks for all your stellar support, it truly is helping us in moving forward!
Hoping we get to go home tmrw! And finish the rest of our wait there!! Appt back at BCCH Tuesday, and hoping we are good to STAY home.. Until, of course, we get the call. Fingers crossed for sooner than later!! Again, can't tell u how grateful we are for all of you! ❤
I simply can't express how thankful we are for all of your help. Each and every one of you truly are Angels. Thank you so incredibly much! ❤
Almost 25% of the way to our goal!! Thank you so much peeps!! Keep spreading the word, for Karter, and keep bringing awareness to how important it is to become a donor!! It's in you to give!! :o)
Here is a link to the interview with the Jim Harrison show...
Have a listen, also take a listen to the president of BCCHs interview too!!
Happy that all areas of concern were addressed!!
Here's another vid... Lol couldn't stop myself!!
Karters Milrinone was upped today. Due to his weight gain it wasn't quite as effective as it has been, and he started to go down again over the past three two days... there for the rate was increased. It's amazing to me in how only just a few short hours, how much it can change him. He was back to more or less himself, happy, chatty and just plain old cute!! I can't help but to continuously wish for a new heart soon... To think we will have to go thru this constant up and down with med adjustments due to weight gain etc... Him deteriorating and then trying to pick him back up again. It hurts... I just wanna kiss him better and take it all away.. I'm so impatient.
On a lighter note, we had some fun after he was feeling a lil better... Had him in a high chair for his first time today! He got to explore food and utensils... And making a mess!!! Lol
Daddy got into town last night and brought Karter a very special piece of home with him... Something he has been missing for some time!! Check out the video, he's soooo happy to be jumping again!!
Another interview down!! Tune into CHNL 610 (Kamloops station) Monday and Tuesday morning to check it out!!
Thanks for the continuous support, we love you all so much!!!
Wow, I can't believe how much the total is climbing!! You are all absolutely amazing!! Thank you sooo so much for helping out towards Karters Journey!!
Here's a lil vid of Karterbutt today, getting in some much needed bumbo time!! Trying to gain some core strength!! Much love to you all!!
Karter & Daddy Facetiming
Sorry peeps, there was suppose to be a link that went with Karter face timing Daddy, apparently it didn't work!! POOP!!
Wanted to say thank you to all of you who have donated!! It means sooo incredibly much, I can't even begin to express it. There are no words. Thank you, All!! Loads of love from all of us, but most of all, Karter!! Xox
Karter facetiming Daddy!!
<----- Facebook page
With his big, soulful eyes
and handsome smile, it's no surprise
baby Karter Thistlethwaite has the nurses of B.C. Children's Hospital
wrapped around his tiny little finger.
"He's a big flirt," said
mom Brandee Brown with a laugh. "He's quite the little ham. He knows how
to work the people around here, that's for sure."
belly laughs, it's hard to believe the eight-month-old has spent every
moment of his life just fighting to survive. Karter's heart, although
capable of giving lots of love to all those around him, is sick.
in the womb, he developed heart block, a problem with the heart's
electrical system. The disease causes a slowing of the signal to the
lower chambers that cause the heart muscle to contract.
given the news after her 20-week ultrasound, when a gut feeling plagued
her that something wasn't right. The next day, doctors gave her and
husband Erik Thistlethwaite the devastating diagnosis.
having their now four-year-old daughter Makiya, Brown had two
miscarriages, the first of which happened just four days before
Christmas, and the couple were determined to save this baby's life.
Karter would need open-heart surgery soon after being born, doctors
recommended that the couple, who live in Kamloops, travel to B.C.
Children's Hospital in Vancouver for the delivery.
eight days after his birth, the fragile newborn had his first surgery to
place a pacemaker. After recovering, Karter was doing better and his
relieved parents took him home. But after tests at his six-month
checkup, their worst fears were realized: Karter was in heart failure.
"They were basically saying that he's lucky to be alive," said Brown as she fought back tears.
was quickly rushed into emergency surgery, where he received a
different pacemaker. The procedure seemed to work at first, but after a
few days in intensive care, Karter began to deteriorate again.
His only chance of survival, doctors said, would be a new heart.
"If this doesn't work, there's no other option for him," Brown whispered, wiping away a stray tear.
said her son is the only infant waiting for a heart in B.C. When a new
heart becomes available, Karter will likely undergo the procedure at
Stollery Children's Hospital in Edmonton, Alta., the only referral
centre in Western Canada for pediatric heart transplants.
difficult to predict how long Karter will wait. In 2011, the median wait
time for patients seeking heart transplants was about a month, while in
2010, it was almost four months, according to B.C. Transplant.
the statistics paint a scary picture. According to the Canadian
Institute of Heath Information, two B.C. children in need of new hearts
either withdrew or died while on the waiting list in 2012. The possible
deaths are a painful reminder of the chronic shortage of available
organs for those in desperate need.
Although Brown desperately
wants to see Karter get a new heart, knowing that with it another family
will face the heart-wrenching loss of their child is too much to bear,
"It kills me to know what another family has to go through in order for us to keep him," she said.
the family anxiously wait, Brown said her husband, who works in
construction, is putting in extra hours to try to keep up with mortgage
payments on their Kamloops home.
Although friends have hosted fundraisers, Brown fears they may lose their house and won't have a place to take Karter home.
now, Brown said they are taking each day as it comes. Although every
moment is terrifying, Brown said her son's cheerfulness always humbles
"The days that I decide to break down, I just look him and
he's smiling and laughing, and it's like, what am I getting so upset
about?" said Brown. "I've learned so much from such a little person."If you would like to Donate to Karter and his family, please do so by clicking the "donate" button.
Donations are collected through paypal accounts for security reasons, or you can walk in to any TD Bank and donate to the following account number: 9149 600 6939
Ps. There is an extreme shortage on organ donors and blood donors. Do your part. Save someone and become a donor today! What's the risk!? You have blood in you to give, and organs to gift! Visit your nearest blood bank, and or click the links below to become an organ donor. You may just save someone's life... Would you think twice if it was you, a friend or a family member that needed it!? https://transplant.bc.ca/OnlineReg/bcts.asp
Take a read, click below for a few myths and facts... http://www.transplant.ca/pubinfo_orgtiss.htm
Find your donor site, click below :o) http://worldwidedonorlinks.blogspot.ca/ Karter's story in The Province Newspaper