Our life with a son who had Urosepsis and has Vesicoureteral Reflex

My third child, my husbands first had to be born at 37 week due to me having ICP – which is intrahepatic cholestatsis of pregnancy. After 37 weeks your risk of stillborn increases significantly. Anyways, so everything was fine and he was born weighing 6 pounds 9oz and 51cm. I was breast feeding and I made that my wish because I couldn’t with my other two.

Hawkston never really wanted to eat at the hospital. The nurses said it was normal, and that he would wake up to eat when he was hungry. I was pumping as well because I wanted to make sure I had lots of milk and I wanted to have a supply in the freezer. The nurses kept saying that they don’t eat a lot so whatever he was getting he was getting enough. He had jaundice as well, so they wanted to keep an eye on that as well. He was born just after midnight on a saturday and Sunday afternoon we were discharged, but he bilirubin had gone up Sunday morning. The doctor on call said to come back tomorrow morning to get his blood checked again and to check his weight.

So we came back to the hospital Monday morning, and he lost some more weight and his bilirubin had gone up again. So they called our family doctor, who told us to do the same thing tomorrow, but needed to start feeding every 2 hours no matter what. So Tuesday comes around and we go back to the hospital to check his weight and bilirubin. He lost more weight and his bilirubin was up again. So our family doctor said we needed to supplement with formula and to go back to the hospital Wednesday. Wednesday comes and they check his weight and bilirubin again and he once again lost weight and his bilirubin went up again. So we were told he needed to go under the UV lights, but we could do it from home. They gave us the UV machine and told us he needed to be on it 24 hours a day. And to come back tomorrow to check his levels and weight.

Well his levels were up again and lost more weight, so he needed to be on the UV lights again, in total it was 3 days he needed to be under the UV lights.

By day 9, I was so exhausted because of the strict every 2 hour feedings and going to the hospital every day and getting more upset and discouraged that nothing was helping my baby gain weight. So at day 9, after leaving the hospital in the morning we decided that I would stop nursing and I would continue to pump but just freeze it, and I would just give Hawkston formula, hoping that the formula would get him to gain weight and I was thinking something was wrong with my breast milk.

So the next day Hawkston is 10 days old, and once again we go back to the hospital to check his bilirubin and his weight. His bilirubin has gone down by a little, but now he has lost 2 pounds since he was born, and he was really sleepy that day. I mean he was always sleepy since he was born, but day 10 he was extra sleepy which we didn’t know why.

So they call our family doctor and he tells us to come in and he will get us to to figure out whats going on. We get to the doctors, and he isn’t really sure whats going on, so he told us to go back to the hospital and he ordered some blood work to check Hawkston’s WBC, RBC, electrolytes, sodium, potassium, a urine sample and a few other things.

We get back to the hospital and they do the blood work and put in a catheter in to get the urine sample. I wait for the results, and texting my husband throughout the day what is happening, because he is at work, at the hospital we go to.

So within an hour we had the results that Hawkston had a huge blood infection. So he was immediately admitted, and his perfusion was greater than a 7. Which is very bad, because it means that anything greater than a 7 means that blood and fluid isn’t going to the organs properly. He was set up on IV saline and 2 IV antibiotics until they did more testing to figure out what the blood infection is from. They were still waiting for the results from the urine. He also was put into the isolette incubator to get him warm and organs working properly. We were told if he didn’t come in when we did he would of died by the afternoon because his organs had already begun to shut down.

So I text my husband to let him know what is happening, he then tells his manager and explain what is happening and he got the ok to leave work. So he comes down to the peads unit to be with Hawkston and I. Dr. Roberts is the paediatrician that admitted Hawkston and she explained what they were going to do. They needed to do a lumbar puncture to see if he had bacterial or viral meningitis. They said we could stay there while they did it or we could leave. We both decided we didn’t want to see that, even though we are both in the medical profession, it is much harder to see and watch when it is your own child. My husband and I decided to go out dinner because we both hadn’t eaten all day.

I got back while my husband went home because my mom was watching our other kids, and Hawkston wasn’t in the room he was in when we left. He was now in the room right across from the nurses station, which I knew was a bad sign. It was now past the shift change, so the nurses looking after Hawkston through the night came to me and told me that he didn’t even cry when they did the lumbar puncture, which is never a good thing, so they wanted to watch him over night so he was across from the nurses station.

The next morning my husband came to the hospital because we knew Dr. Roberts was going to come by and talk to us. Dr. Roberts told us that the urine came back and he had a UTI, which caused the blood infection which is called urosepsis. She had ordered a brain ultrasound to help rule out meningitis since the lumbar puncture cultures take up to 5 days to confirm. As well as she ordered a kidney ultrasound to see if there was any damage to the kidneys. (both ultrasounds were negative)

So they where changing one of his antibiotics, but he was still going to be on 2 through IV. Dr. Roberts said he was in the hospital for a minimum of 2 weeks but could be longer. She gave my husband a doctors note explaining a parent needed to be there at all times. So he gave that note to his manager and took the last week he had left from that job (he got another full time job at a mental hospital with more money) and used up his stat holidays.

So we would take turns being there, though my husband would have to start his new job, so I would be there all day and all night until he got to the hospital and then he would sometimes stay overnight but then I would have to be back at the hospital for 5am so he could go home have a shower and leave for work. On his days off we would take turns spending the night there.

Hawkston was allowed to leave after 10 days, just in time for easter! We were a happy that we went from hours away from dying, to finally eating properly, to being able to get discharged a few days ahead of schedule!

Well a week later after Hawkston was discharged he had a low grade fever of 37.5C and wasn’t himself. So I took him in to the peads unit and they said they would do some blood work and do a urine sample again. The paediatrician working that day was Dr. Runkle and she said because my husband and I are in the medical field and we are amazing parents for being on top of things she felt it was ok that while we wait for the results, if there was anything to report that we could wait at home instead of admitting Hawkston and waiting. The blood cultures take 24 hours to come back and the urine takes 48 hours to come back. Well 2 days later my husband gets that phone call in the morning while I’m making breakfast that Hawkston has another UTI. my heart sank, we thought this would be a thing of the past, and wouldn’t have to think about it again. But we were also glad I knew something was wrong and took him to get checked. So back we go to the hospital. Dr. Gordon was the paediatrician who was working that day. They had tried 10 times to put in the IV but they couldn’t get it in. The tried in both sides of his head again, and had to re shave the spots they used the last time, they tried in both of his feet, in his forehand, both of his hands, and tried once again in his head. But once they got it in and flushed it, it would blow. So they decided that was enough and would put him on oral antibiotics.

So because he would be on the oral antibiotics they decided he only needed to be in the hospital one night to make sure he was taking the medication down and not throwing it up. He was on macrobid, but he was throwing it up so they put him on trimethoprim and he was ok on that.

So Dr. Roberts ordered a VCUG ultrasound to confirm if he had urinary reflux, because he has had 2 utis, they figured thats what Hawkston had.

Hawkston was 2 months old when he had the VCUG ultrasounds done, and my husband said he definitely had reflux, you could see if go back up to the kidneys. So about a month later we had an appointment with Dr. Roberts and she confirmed with us Hawkston has bilateral Vesicoureteral reflex. In his left ureter is a grade one, so the urine only goes up half way to the kidneys, his right ureter is a grade four, so the urine goes up right to the kidney, and thats why he had 2 utis by 1 month old.

So he has to be on daily antibiotics until he is around 5-6 then they will check by an ultrasound to see if he has grown into the ureters, if not they will have to do surgery to correct it.

We recently were referred to Sick Kids Hospital, because Orillia Soldiers sends their patients to Sick Kids when they can’t help them. The urologist at Sick Kids told us after Hawkston is 1 year old (that is in 6 months!) there is no scientific evidence that proves that it is beneficial to be on the medication longer than a year old. My husband and I are not sure about that because we don’t want to go through what we went trough already, I am already the paranoid mother that when Hawkston doesn’t eat for 24 hours I’m in the hospital trying to get answers as to why!

Hawkstons first few months of his life has been a roller coaster for us, but we honestly wouldn’t any other way! He kept us on our toes thats for sure!


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