The night of the 4th of July around 10:00 that night we heard screaming. We thought it was Hudson, checked the monitor and it was silent. So Spencer and I both went running toward his room and realized the screaming was coming from Roman's room not Hudson's. He was screaming that his tummy hurt so bad! We decided we should take him to the ER. If it was still bothering him that much, we really needed to get it taken care of.
We got stuck in traffic from the Riverton fireworks, so it took us about 45 minutes to get to the ER. Roman and I talked and by the time we were there he was acting normal. He said sitting in his car seat made his tummy feel better. By the time we got to the ER parking lot I was having serious second thought about taking him in. It was packed. We were there though and we really needed to get this taken care of. We went inside and the waiting room was full. We checked in quickly but knew it would be a wait.
They finally got us back into a room and the doctor came in and started by saying that they were very busy, they had 26 patients so she didn't have time to sit and talk, she asked what the problem was. I explained that Roman was in a lot of pain, that he had been constipated but the increased Miralax didn't seem to be helping. She asked me what I wanted her to do. I wanted her to tell ME what to do! I wanted him to feel better! She was the doctor. She ordered magnesium citrate and a suppository to treat the constipation then asked if I wanted them to take pictures, or if we just wanted to treat the constipation. I asked for imaging so they sent him for a CT scan but the doctor warned me they were so busy it may be as much as an hour wait to have the scan read and get us any additional information. We were settling in for the long haul.
Roman was sitting in the room drinking the magnesium citrate and about 10 minutes later the doctor came back in to talk to me. She started by stressing that it was not a tumor or cancerous but they had already ordered an ambulance and they were going to send us to Primary Children's Hospital. The CT scan showed that his bladder, ureters and kidneys were completely full and his bladder was not draining at all. They told us that he would probably need surgery in the morning. They sent me out to the car to get Roman's car seat. As I was getting the car seat from the car the nurses gave Roman a blanket that he was able to keep so that he could be warm for the ride in the ambulance. They strapped the car seat to the stretcher and we were on our way. Roman was really excited about the ambulance ride. He has always been fascinated with emergency vehicles so he thought it was SO COOL!
Around 6:00 in the morning we were moved to a room and started meeting with doctors. Roman's "team" consisted of a urologist, nephrologist (kidney doctor), gastrointestinalogist, endocrinologist, pediatrician and managing care doctor (she coordinated between all the doctors, it was actually a medical student and it was a little frustrating because a lot of times she didn't know answers to our questions even though she was the go between for the doctors and us.) From the very beginning they told us that they thought the problem was a valve, called the posterior urethral valves, usually this is detected on ultrasound or found within 6 months of birth. The problem is that it doesn't allow the bladder to drain fully.
They hypothesized that it had been a problem his whole life and it had just gotten progressively worse until it came to a peak that night. Their other 2 theories were that there was a problem with his ureters (they were completely dilated when we went in) and were allowing urine to flow back and forth from kidneys to bladder. The third theory was that his bladder was not working properly. Once we saw the urologist and the nephrologist we knew Roman wouldn't have surgery that day, they needed to get him stabilized and do more testing first. His kidneys were in rough shape. They needed to get them drained and able to process the dye for the test before they could do it, they also needed to get the constipation issue resolved before they could do the test on his bladder/ureters too. They decided they needed to re-catheterize him because he was still unable to pass urine and his abdomen was getting very distended again, two different nurses tried and they both said "There must be an anatomy problem, it's like we get in then it hits something and won't go any further." They weren't able to give him any sedation because his kidneys were in such poor condition they wouldn't be able to process it. Finally they called the urologist to place the catheter and drained another 600 ml from his bladder/ureters/kidneys. Roman was put on a clear liquids only diet with a fairly high amount of Miralax trying to clear his bowels. They usually use a medicine called go-lightly for a colon clean-out, but his kidneys couldn't handle it, so they were going to try to continue clean out with miralax.
The first night was mostly uneventful. We were both so tired from being up the entire night before that as soon as they left the room and let us sleep, we were both out. I ended up sleeping on the recliner right next to him because he was nervous he was going to need something in the night and he couldn't see me. At 5:00 am when they came in to draw his blood he said "It's really hard to sleep here, they keep waking me up."
We were hoping that next day (July 6) they would be able to do testing and get us some answers. Instead they found that he had a kidney infection also that needed to be treated before any diagnostics could be done too. So instead of having a busy day, we had a very slow, boring, waiting for answers day. We were told in the morning we would have a meeting at some point that day with all of his doctors to discuss his care plan. Well, they had the meeting in the hall and sent the nurse in to tell us about it. She started by saying "From what I understand..." meaning she didn't understand and couldn't really answer our questions. Most of the doctors did eventually trickle on throughout the day, except the 2 we had questions for specifically.
They found out that night that the infection in his kidneys was a staph infection and had to culture it over 48 hours to pinpoint the strain. They said its not uncommon for staph infections to develop when this is happening and they are hypothosizing that his kidneys may have never fully drained his entire life. That night they started a new med called Vancromycin (a broad spectrum antibiotic) that will attack staph. They said in rare cases they have a reaction called "Red man syndrome" where their skin turns red and itchy. About half way through the dose Roman was red and itchy everywhere. They got him benadryl and he was fine after that, but even with that reaction they said it was still okay to continue use.
That night we (Roman's nurse and me) took Roman to the bathroom, he had a catheter in but we were still trying to get him cleaned out. Roman LOVED his nurse, Lacey, and he always asked for her when he needed to go to the bathroom. She was off at 7 so it was a different nurse and we finally convinced him to go and the nurse asked "is that what color his poop has been today?" Um you mean bright red? No! So they called the Dr who came and looked and thought maybe all the laxatives were upsetting his tract. So they wanted to just keep an eye on it, he had very bloody urine that day, so I had been pretty worried about all the blood anyway.
Around midnight Roman woke up screaming. I immediately pushed the nurse button and jumped to help him. He had been rolling in his sleep and it looked like he had pulled the cath out. His pullup was full in the front (not good with a cath in) and red. The nurse came in and started frantically calling the doctor because they had orders that a urologist has to place his catheter so they wanted him NOW! He had just left for the night so 2 other doctors came in and they were paging the urologist. Roman was screaming this whole time; I was freaking out. The first doctor opens the side of his pullup and agrees this is bad. Then he notices the consistency and we are all thrown. Its gelatinous. So the second doctor looks and says "I think this might all be loose stool, I think he pulled on the cath rolling that made his bladder start spasming but I don't think the catheter is out." So we start talking about the potential of bloody stools again and what it could be and the urologist arrived. The catheter had been pulled but was still in place and he said "this isn't blood. I don't know what it is, but it isn't blood. Then it hit me, he ate 2 cups of red jello (he was still on a clear liquid diet and was SO HUNGRY) So no more red jello for him. I had to hold him the rest of the night so he wouldn't roll again.
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