we are getting discharged! klay’s being sent home with another nephrostomy tube for at least another 3 weeks. we need to come back so that his urology surgeon can do a nephrostogram to check if things are healed enough to remove the nephrostomy tube and leave the double jstent in for at least 8-12 weeks to help heal the ureter. he’ll be sent home with full dose antibiotics and than continue on with daily antibiotics as long as he has his nephrostomy so a result of a series infection doesn’t reoccur like the last time. thanks everyone for your kind words❤️

2018-05-1015th anesthetic for 2.5 hours. klay’s belly started to get really distended again so they did an ultrasound that showed there is urine leaking into his belly.. they brought him to IR and placed another nephrostomy tube, the urology surgeon put some contrast dye into kidney to see where it goes and it scattered in and around the double jstent, and leaked out of a tiny hole into his belly where they did an anastomosis. they brought him directly from IR into the OR and placed a longer, larger double jstent. the nephrostomy was able to decompress his kidney and is now letting his ureter anastomosis rest and heal..

14th anesthetic for 1.5 hours. klay got an xray and an ultrasound that showed the jstent that they placed yesterday was too long so it curled within the ureter. they did a cystoscopy using a fyberscope to place a shorter double jstent. on a positive note, he’s been doing very well with his pain levels and we managed to get his severe itchiness/red eyes under control. hoping to start feeding soon, and lower his epidural pain infusion.

klay is currently recovering from his 13th, 7.5 hour surgery today on the hole in his ureter. he had 2 teams of surgeons in the OR and they managed to fix the hole in his ureter!! the hole was 3cm big, they made a new incision on his side so he has an epidural catheter for the next few days to infuse meds for his pain. they had to shift his kidney a bit and he’ll have a jstent to help his ureter heal for the next 2-3months. fingers crossed his ureter heals properly and there is no leak of urine, but we will only know forsure if it worked within the next few days.. we are relieved that they did NOT have to use his bowels to help construct his ureter, and they managed to SAVE his kidney!!! they will do an xray tomorrow morning to keep an eye on whats happening on the inside.

2018-03-29 surgery #12 for 1.5 hours; klay made his famous entrance back to CHEO via ornge airplane in the middle of the night.. his nephrostomy stopped draining and he spiked a temp so i brought him into NB hospital. the urologist and radiologist were able to temporarily empty his kidney to provide short term relief. they we’re unable to get an IV so had to give shots in his legs of antibiotics. his temp kept spiking so he went into septic shock with a heart rate of 235 so they gave boluses. they had to give an IO which is similar to an IV but its in his bone because his veins kept blowing but his leg swelled and caused him alot of pain so it had to be removed. they are assuming he has a kidney infection and are waiting for results but meanwhile treating with antibiotics. urology has changed his nephrostomy tube with a larger size and fixed the placement as it got pulled. he will be receiving IV antibiotics for the next little bit and hopefully his tube continues to drain. we are waiting for blood cultures to come back from northbay to clear him from needing an IV in hospital.

MARCH 17TH, 2018

“yaaayyy” we’re discharged!!!!!! ❤️ ❤️ after 2.5 months in hospital and multiple surgeries, we’re finally able to go home. the botox procedure has definitely helped klay with his stooling and so his feeding has picked up. he will need a few more botox procedures in the near future to help his bowel move along. we will be back in a month for a follow up appointment with his surgeon. we will also have a follow up with urology to book his next surgery in 3-4 months time, and go over a few approaches for fixing his ureter to remove the nephrostomy as they are waiting a few months so klay is clinically stable. thank you all for following klays story and sending positive vibes but sadly it just isn’t over quit yet but at least we get a few months break.
☘️ happy st-pattys day ☘️

surgery #10 (2018-03-12)this morning. short procedure; they gave him botox in his bum to help with his stooling as he stopped stooling and his eating is very poor. hoping this will help..

2018-02-21--klayten underwent his 9th surgery this afternoon for 2 hours. the fluid sample from yesterday came back with a bit of creatine in it which is found in urine. a doppler ultrasound showed his left kidney being inflamed, so they did a CT contrast dye scan and the urologist said that it showed the dye leaking from the ureter from his inflamed kidney instead of going to his bladder, it leaks into his stomach. they emptied out 420ml of fluid again from his belly, placed another new drain in his belly to drain what is left, so they put a nephrostomy tube in his kidney to drain his urine. this has not fixed the problem but it will prevent the leak and let it rest before they go in and put a stent catheter in his ureter. the infectious disease team is currently trying to treat him for a blood infection caused by his pic line but daily blood cultures continue to come back positive. we are also looking into why he has absolutely no appetite.

(2018-02-20)another 1.5 hours of invasive surgery this morning. for the past few days klays belly was starting to get distended again. ultrasound showed liquid pockets that his drain was not draining anymore. yesterday morning his temp was very low than spiked to a high fever of 40+. the ICU spot team was called for help. his heart rate was sitting at 250-300s, his blood pressure was high 130s, his skin was modelled and cold as ice. they started antibiotics because they’re suspecting infection but not sure if its from his pic line which goes to his heart with TPN running through it, his incision that has been opened up 3 times, or his drain insertion. they gave boluses to help decrease his heart rate but it stopped working. at 1am he was sent for a CT injection contrast scan and they found severe fluid in several different pockets. they are not sure what in his belly is leaking, or what the fluid is. at 4am spot team rushed him to PICU as his body was no longer absorbing the boluses and he was than in septic shock and hypertensive. they wanted close monitoring and epinephrine given along with sedation. this morning klay received two drains in each side of his belly and within a few minutes it drained 1L and it continues to drain.
klay was taken back to the OR for surgery #7 (2018-02-12)for 1 hour. his belly was getting severely distended and was increasing in girth measurements. they did xrays and ultrasounds and found a ton of liquid filled in his belly that is coming from a leak in his bowels which is called ascites. they have inserted a tube into his belly and it’s attached to a bag to drain the liquid and will be there the next little while until his bowel is healed and stops leaking into his belly. they have already drained 2L of fluid so far and it’s continuing to drain fast. due to him not eating for the past 4 weeks and only being on TPN his malnutrition levels are very low and they are giving him albumin to replace the losses that are leaking into his belly so he can get the protein that his body needs in his blood. these pictures were all taken today which shows how such fast relief he got already since emptying his belly!

LATE LAST NIGHT (2018-02-06)
klay was rushed for 5 hours of emergency surgery as he was having bouts of severe colic abdominal pain causing him to vomit, choke, and stop breathing. his surgical team was able to witness it and than called his surgeon in to push tomorrows surgery to tonight.

over the past few days his ultrasounds, xrays, upper GI contrast study, blood work, urine/stool samples, have all came back clear so they were all stumped as to what was wrong which is the most scariest thing to hear as a parent. they brought him to OR, they had a hard time to get feeding tube down his throat as its very swollen and nearly closed up which is probably why his eating never picked up for the past few weeks. they opened his incision up for the 3rd time and found severe adhesions all throughout bowels once again. he was in severe pain and they had to give different and stronger narcotics to stabilize him. he lost a lot of blood and needed another blood transfusion during the operation.
he is currently in PICU and will be for a while because he is in critical condition. they can’t take his breathing tube out because his throat will shut. they are treating him with steroids and in the mean time sedating him as he can’t breathe on his own. his heart rate is all over the place and he has a very high temp and is quit uncomfortable and in pain. every time his bowels are exposed and touched they will form adhesions. the surgeon said that he will most definitely form more adhesions and cause severe pain and vomiting but they don’t know how he will present it or when it will happen. so their plan is to fix why his throat is severely infected to the point of almost closing, get his bowels working again, him eating, than we can go home. but than once his adhesions start to form and cause problems we will need to come back. they wont do surgery again as it will set us back to him forming more adhesions so they will treat him in hospital, and as time goes by the adhesions will tighten, than grow with him and eventually snap and break and clear up but it could take months, nobody knows for sure how long that could take. still trying to process everything and im frustrated that he will continue to battle and endure pain for who knows how long now.
i am currently reaching out to other hospitals for second opinions as well as HD specialized surgeons from the states. he needs the most advocates as he can..



In September 2017, Klayten’s biopsy tested positive and he was than diagnosed with Hirschsprungs disease. he underwent 8 hours of surgery, they found out during surgery that he has TCHD (total colonic hirschsprungs disease).   During this surgery Klayten was given an ileostomy until he receives his second surgery in Febuary 2018. October 27th he finally started to feel better until he was rushed to the OR. As his bowels came through an opening of his ileostomy causing twisting, blockage and severe pain. He under went another 1.5 hours of surgery.  January 13th he got flown to CHEO via ornge ambulance/airplane due to Klayten’s stoma being prolapsed. January 17th Klayten underwent an is currently recovering from 8 hours of emergency surgery .  They have removed his ileostomy, cut out his entire colon(all his large intestine) & 15cm of small intestine, and attached healthy bowels to his rectum. they’re working to manage his large amount of pain .. 
Klayten had to undergo a 4hour a blood transfusion the morning after his surgery.
. hopefully this is it for pain/surgeries. our warrior turns 1 year next month and has had a rough first year of his life fighting this disease, so i think it’s time to kick this TCHD+ in the A$$ and for some good luck to come his way for once. January 18th  Klayten was taken back to the OR for another 1.5 hours due to belly distention, not pooping, and vomiting. they thought that they would have to correct his bowels and place another ileostomy to let them rest, but once they did a colonoscopy to check if his bowels were twisted/obstructed, they realized they all looked healthy! he pooped a bit when his body relaxed from anesthesia, so we’re thinking his pain level was too high for his bowels to function. he will receive a line for nutrition as he wont be intaking any food/fluids until his bowels start to work. he will spend the night in the ICU so they can keep a very close eye on him, and we’re waiting on poop. his eyes are super swollen due to a reaction to the morphine..

 HIRSCHSRUNG(HERSH-sproong) disease

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Richard Guay

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