6-week hospital stay leads to a summer of uncertainty for Steinbach family

It’s been a summer of uncertainty for a Steinbach couple, as their plans changed from holidays at home, to a six-week hospital stay with their 15-month-old son, Nixon.

Jaycia Koop, and her husband Mike, could have never imagined, what appeared at first, to be a flu-bug or teething, then ending up being diagnosed with HUS, Hemolytic uremic syndrome, as the result of E. coli, which completely turned their lives upside down.

Though the cause of the infection is unknown, symptoms started showing up on Monday, July 10, and by Wednesday Koop knew something was wrong with her son. She says there was a last-minute cancellation at the Steinbach Quick Care Clinic, and they were able to see the doctor that afternoon.

The first diagnosis was intussusception, “where your bowels kind of like telescope into each other, which can be extremely painful, and would explain the symptoms that he was having.”

However, that changed quickly with the sight of blood in the stool. Koop recalls heading to the Children’s Hospital in Winnipeg hoping they would be able to help her son, however, after a long night in the ER at the HSC, the doctor came in their room with a diagnosis.

“After a second round of bloodwork, Nixon’s Creatinine Levels, were, like, through the roof, almost 400, whereas his levels for his age, should be closer to 20 to 40. Then at that point, she said, Nixon is going into kidney failure, and we think he has what is called HUS Hemolytic uremic syndrome and his kidneys and his blood are affected, and his kidneys are just not working.”

Koop recalls still thinking, they’ll give him antibiotics and send them home. This was not the case.

“They said, a kidney specialist is going to be coming to talk to you guys. And I was just, I just wasn't even processing everything. Thank goodness, Mike was there at the time of this diagnosis, which was such, such a good thing.”

Koop remembers still thinking that they were taking Nixon home, but all that changed with the doctor’s words.

“She said, “Your boy is very sick and he's going to need dialysis and I should expect to be in here at least a week.”

Those words were very difficult for Koop to comprehend. Little did they know that it would be a six-week stint.

Koop says one of the effects of HUS is seizures and two-days after being admitted Nixon had an eight-minute episode.

“And that was the beginning of several smaller seizures leading into that weekend, and then Saturday he had his Vas Cath surgery, inserting the catheter into his neck vein for dialysis. He had his first round of dialysis, after which the kidney doctor, Nephrologist, came to check on Nixon and said, “All things considered, he had a fairly good day, but she looked at us and said, “I don't think we've seen the worst for Nixon yet.”

Koop confesses she wasn’t sure what that meant but began to understand better when Sunday morning came around and Nixon’s oxygen levels started plummeting. Then by noon Sunday, the young boy was intubated.

Once Nixon’s body started healing, he was extubated, and kidney dialysis could begin. Koop recalls the long hours of treatment and how difficult they were on their boy and themselves.

“He still had the VAS Cath in his neck, and we had to do like 3-4 hours of dialysis with a 17-month-old who, I mean, he obviously wasn't feeling himself, but he still wanted to be active, and it just was so hard keeping him still for that long, with the tubes in his neck, like pumping blood literally in and out of his body.”

Nixon sleeping on the chest of his dad during dialysis.  (photo supplied)

The care for Nixon continued for another six-weeks.

Koop notes what kept her going through some of the hardest days was seeing her little boy keep going. “He had no choice. He had to keep going. He had to go through all these procedures and all this pain and the pokes and everything. There were many times where I just wanted to run out of that hospital and never look back, and yet knowing that my little boy was stuck there, I couldn’t give up.”

Jaycia taking hallway walks with Nixon during second stint in PICU. (photo supplied)

As well, Koops says on those dark days, she was able to continue to care for her boy, because of the many thoughts and prayers of their family and friends.

“Thanks to our incredible village of support, of people rallying for us, praying for us and just knowing that people were praying, especially in the times, I just didn't have the words or the strength or the energy, I truly believed that we were carried on the wings of those prayers and people just rallied, like with gift cards, meals, food, like so much. Gas gift cards, parking, or people just sent us etransfers. We were just completely humbled, completely humbled, and just also so eternally grateful for the way that, even strangers, like people that we don't even know, that just heard through the grapevine of our situation helped us out. We have just felt incredibly, incredibly blessed.”

Koop also takes a moment to thank for HSC Children’s Hospital doctors, nurses and staff saying,

“We have felt so incredibly blessed by the care that we received at the Children's Hospital. We were in several different wards throughout our stay, and everywhere the nurses were absolutely incredible. We truly felt so cared for. The dialysis team, like everyone, we just felt so loved and cared for. And during the times we needed to advocate for our child, we both felt so valued in that. I don't have a medical degree, but I know my kid, and just learning to fight for that, and I felt like that was really well received.”

"I just felt like, for the most part, we worked really well as a team with, as parents and medical team in just supporting Nixon, and I just would say thank you. Thank you. Thank you. Thank you for everything. We were just blown away by the humanity that was shown, not just the medical side of it.”

Mike and Jaycia Koop with Rylee (left) and Nixon (stroller) heading home. (Photo supplied)

The Koop family has been under one roof now for a couple of weeks and though, the summer of 2023 didn’t turn out to be what they’d planned, the next season will be spent at home. Koop, a Grade 2 teacher in Steinbach says, she will be staying home rather than subbing from time to time.

“Right now, we just want to get Nixon healthy and just be with my kids. That's what my heart wants right now.”

"I’d like to get back to normal life and everything, but it's like many people have been gently reminding me, “It's OK to not be OK. It's OK to not have your ducks in a row. It's OK to just be. Let the dust settle. You've been through a lot." And I think sometimes it's been good for me to hear that because it's easy for me to just feel like, OK, now we got to, you know, pick up and get back to normal whereas, it will take a while for us to get back to normal.”

This past Friday night, the Koop family was supported at a worship night held at their home church in Steinbach and took in donations of $676, which has now been dropped off at the Ronald McDonald Room at the HSC Children’s Hospital.

Jaycia Koop explains why they decided to donate the money to RMH.

“It’s such an incredible foundation. I didn't know, pre our stay at the HSC, but there's a Ronald McDonald's kind of house inside the hospital, that has three rooms, a shower and there's a kitchen there. And they have staff that are often cooking homemade meals. And it's just a bit of a sanctuary, a bit of a safe place to go, away from the beeping machines and all of the hustle and bustle of the hospital. And for many of the nights we were able to have a room there for free, which was incredible. And because of the support of people through Ronald McDonald House we just want to give back. We have felt so loved, and so appreciated. It's a place you don't want to be as a parent, in the hospital with your kid, and yet having a place where you can go and shower and have just, like, what feels more of a homey meal or just a soft place to land was huge, absolutely huge.”

Koop gives us an update on Nixon saying, “These past few days have been so good. Nixon is doing noticeably better. He’s eating so well! Makes me so happy to hear him say “Mo” and baby-sign with his hands, “more”. He is joyful again and my heart is bursting with joy as well! Our JoyBoy. He has been through so much, come so, so far, and seeing him smile, run and play again, is just the most precious gift!”

 

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