Tuesday, July 24, 2012

E coli & HUS

 This post is a large part of why I'm so behind on blogging- not only because it interrupted my regular life, but also because it's something that is difficult to put into words.  We could have lost Serra- it was closer than we would have liked, but luckily for us it wasn't as close as they were afraid it might have been!

Serra was having some symptoms of illness- nothing that seemed too dangerous [diarrhea, upset stomach, etc.].  And then we thought we saw blood in her stool.  Her pediatric office wanted a sample and while we were waiting for the results, Serra took a turn for the worse.  She hardly ate, heck she was hardly ever awake.  When she was awake, she was lethargic and complaining of her stomach hurting.  She had fevers, her stomach was distended and she looked pale- she's always been fair-skinned, but she was PALE even for her!  We took her back to the pediatrician even though we knew they most likely wouldn't have the results back, but obviously there were new developments.

Just seeing her was enough for them to have some concern, but after a few quick tests they found that her blood levels were all low.  Turns out we didn't need the stool sample back to find out if there was blood in it- she was obviously losing blood somehow!  They also wanted a CT of her abdomen to find out if she had appendicitis or something else going on, and they needed a lot of blood-work done.  The pediatrician said the quickest and easiest way to get it all done would be to admit her to the hospital- we readily agreed.

Unfortunately, our insurance doesn't work with the major network of hospitals here in Utah, so the closest one was in north Orem.  We drove her straight there, had her admitted, they drew some blood and hooked her up to an IV.  We went downstairs to have the CT done and right after we got her on the table, THE phone rang- the emergency one in the actual CT room to reach the technicians immediately if needed.  They couldn't give her the dye injection for the CT because her kidneys were failing.  Um, wait, what?  [She later had an ultrasound and x-rays to confirm it was just her kidneys.]  When we got back to her room, her pediatrician was there- he drove all the way from Saratoga Springs on his own time to give me the bad news.

The stool sample still wasn't back to confirm, but they were positive she must have contracted a rare form of E coli which led to Hemolytic Uremic Syndrome [HUS].  The E coli caused the bloody mucus in her stool- her intestinal tract was diseased and bleeding raw which then spread to her kidneys.  The kidneys start to fail and sometimes don't bounce back- resulting in dialysis and sometimes transplant.  Because of the blood loss, she required a transfusion.  As for the kidney failure, there was nothing they could do- antibiotics would make it worse.  But we had to stay in the hospital in case she took a turn for the worse [then they would be right there to set up dialysis, etc.]  The hospital we were in wasn't equipped to deal with that- she would need an ambulance transport to Primary Children's.

We arrived in the ICU and were immediately swarmed by doctors and staff in training.  Serra was hysterical- they had to give her a relaxant and because of that she would need a catheter.  However, as soon as the relaxant started to take effect, we could all see her stomach deflate- she had been full of urine [more proof that he kidneys were failing- we had no way of knowing whether she had been peeing because every time she would get on the toilet she had diarrhea, but obviously now she had NOT been peeing.]  From that point on, she would let them touch her and would even talk back to a few select nurses- she still kicked and screamed anytime they came to draw blood.  Her face puffed up as well as her hands and feet- another sign of the kidney failure- but after that first rough night, she was discharged to a regular hospital room.

Finally, we could let Alex come and visit- the hospital stay was very difficult for him.  He missed me, he missed Serra, he could feel the tension and was concerned about Serra.  However, he really loved the playrooms, the cafeteria, and watching movies in Serra's cool bed!

Unfortunately, the week Serra was in the hospital was the week an old friend of Ian's was in town visiting.  Luckily, he and Ian were able to spend a few times together doing fun things [one of which was seeing the new Batman movie- obviously not at the fateful theater].  Serra loved when Brett would come visit at the hospital- and she asks every once in a while still when he'll come back.

Things were finally taking a turn for the better- a very, VERY slow turn.  The stool sample results finally arrived- they confirmed she had a very rare form of E coli.  Serra was in isolation for the duration of her stay because the E coli is technically contagious through her stool.  It was hard for Serra to not leave her room- but it was harder for her to be on a very strict renal diet.  We tried to not eat food in front of her, but there were times she didn't want us to leave so we had no choice.  The things she missed the most [mostly because they were things she saw us eating] were hotdogs, bananas, and muffins.  The diet ensured that she had very little or no potassium, sodium and phosphorus- it basically amounted to a handful of allowable produce, a few meats- none of which she liked except eggs- some basic cereals and breads without milk or other dairy.  She was also very limited on her fluid intake- they didn't want to flood her kidneys and make them worse.  Her intake and outtake were measured religiously until she showed a lot more improvement.

During her stay, she had lots of visitors- and lots of presents.  It got to the point where she expected something every time someone new came to see her- even if it was just the new shift of nurses!  I think they were used to that though, because they all seemed to have some little trinket to give her- or would find her some of her favorite thing: paint.  One of her favorite visits was when her neighborhood friends, Benjamin and Anna, came to visit- they loved going for a ride on her bed.

 After a few days, they had to take the catheter out so she wouldn't get a urinary infection [wouldn't want to add salt to a wound!]  Which meant Serra would need to get up and start walking so she could go to the bathroom.  Once she was allowed, it was all she wanted to do- we could barely keep her on the bed for occasional monitoring, but I'm convinced it was what finally made her show vast improvement.

After 6 days, we were given the go-ahead to take Serra home.  She had needed 1 more blood transfusion because her levels hadn't increased as much as they would have liked.  But we escaped the more serious possible side effects from the kidney failure.  She will be monitored for the rest of her life- and her kidneys are obviously "scarred" so she'll be more susceptible to kidney issues.  Her creatinine levels still aren't right, there is still some traces of blood in her urine samples, and her iron level isn't quite up to par- but the doctors consider her healed.  She has another appointment in a month or two to see if those things have improved- if not, we may be in for some more testing.  But for now, the nightmare is over- Serra is back to her old self and hopefully starting to forget the incident.  I, for one, am glad she was in the small percentage for quick healing naturally- she didn't even need blood pressure medication like so many patients with kidney failure usually do.  Considering how young she was and what she went through, she was brave- a real star- hopefully from here on out we don't need proof of that again!


Megan said...

Wow Kristen. I'm sorry I didn't know about this, but so happy that it turned out as best as it could. I hope she continues to improve and doesn't scare you like that again.

Amy said...

Poor litte Serra! My boys still pray for her every day.

mort said...

Oh my gosh, how scary. Allgoods were saying there were more kids with ecoli at Primarys. You know that is a tender topic for our neighborhood. I'm so glad it turned out ok. Serra looks great. I wish we could help. Miss you.

Kristen said...

Joan, I actually didn't know about the Allgood's son until you mentioned it and I looked it up! That's so sad that someone I know actually lost a child to what Serra had! We really do know how lucky we are- the fatality rate is high for what she had- we owe some of it to her being in the older age range which tends to not have quite as high of a mortality rate, and also to her super awesome immune system/bodily functions- which she inherited from her father!

Thanks everybody for your comments and concern- sorry you didn't get communication, Megan, but yes it's all done and she's happy and "healthy" again!