Roman's hospital visit - part 3 - July 11-14

Surgery was scheduled for July 11 at 12:30 pm MST.  Roman woke up and wanted breakfast, after having dinner he was STARVING.  So to be told he couldn't eat again was upsetting, and we were both just on edge that morning.  I was really nervous about his surgery where his kidney function was still so low, I was worried about his ability to process the anesthesia and I was worried about the surgery itself.  That morning the nephrologist came in and met with us and said that he was going to ask the urology team to do another test while they were in surgery to follow the ureters up to the kidneys to make sure there wasn't an additional problem there.

I know I was being short because I was so nervous.  Roman was a grouch because he was hungry and he didn't really understand what was going on.  We kept telling him that he was going for surgery but he didn't understand what that meant.  Thankfully Odessa came by again and offered to take Roman to the play room.  She told me to go have a little time just for me, which was much needed.  I went for a walk.  As I walked out the doors of the hospital the sky was overcast and grey.  It fit my mood exactly.  I was so anxious about this.  I was so worried for my sweet boy.  I just kept walking until it started to rain, then I decided it was best to head back rather than face the downpour.

When I got back I found Roman and Odessa playing out on the patio, he loved playing in the little outdoor play area (on the 3rd floor, I loved that they had outside areas on our floor).  He was in much better spirits and Odessa had a kit that she could go over with Roman to show him what to expect from surgery.  She let him play with masks, mask scents, she even let him give his hospital buddy (a doll they gave him that they let him practice medicine on) an iv.  She made things light and fun and she was able to go into the OR with him so that there was a familiar face there as he went to sleep.

The urologist and anesthesiologist came and talked to me before they started.  The anesthesiologist assured me they were using medicines that were okay with Roman's kidney function.  I asked the urologist about the additional test the nephrologist mentioned and they didn't feel it was necessary.  They felt that the valves were the problem.

So he was scheduled for a cytoscopy (just going in with a scope to see what the problems were visually) and valve ablation.  They said in total it would be about 90 minutes.  I was a total wreck the whole time he was gone.  When the urologist finally came to talk to me, it was just about exactly 90 minutes he said that the valve was almost completely closed.  He felt confident that the problem would be resolved with this, as long as the damage wasn't too much for his little body to recover from.  He said they usually do 2 ablations, with Roman they did 3 because it was so closed up.  They had redone the catheter and they wanted to let him heal for 48 hours then they would remove the catheter and let him try to clear his bladder.  After he peed they would scan his bladder to see how full it was still.  They wanted to watch it for at least a day or two to make sure he was doing okay but they stressed several times that because of the amount of damage to his bladder they may have to either teach us how to do intermittent catheterization (meaning we would have to catheterize him at home until they could do a permanent catheter) or he may need a permanent catheter.

The nurses put this welcome back sign on Roman's door so it was there to greet him when he got back to his room from surgery.  He took it down and colored it then he wanted it back up on his door.

The urologist said it would be about 5-10 minutes and they would come and get me to go back with him in the recovery room.  5 minutes turned into 10 that turned into 20 and I was starting to get really worried.  They finally called for me to come back and as I walked into the room Roman looked at me and in his grouchiest voice said "I want noodles!"  We had to wait almost 1/2 an hour because they forgot to give floor orders to take Roman back to the room he had been in before.  While we were waiting for the floor orders to come through the nephrologist came to talk to me.  He had seen the images from Roman's surgery and he too felt confident this was the problem, that hopefully this would resolve it for him, that we could now deal with taking care of the damage and he said "Tomorrow we need to talk about chronic kidney disease.  Tonight get a good nights sleep."  How do you get a good night sleep when someone says they want to talk to you about a chronic condition in your child?

Thursday we had 2 tough conversations.  1 - Chronic kidney disease.  We found out that when we arrived at the hospital Roman was in kidney failure.  He was up to about 30% function.  What that means for the future...we don't know.  We are going to work hard to keep that up.  To not let him lose any more function if possible through diet, medicine and regular doctor visits to monitor.  We are hopeful that it will maybe improve a little more, (50% would be a good amount right now), adolescence will be the telling time to see if his kidneys can keep up with his growing body. 2 - The urologists again stressed to us that his bladder is in bad shape.  He's extremely young to be dealing with a bladder that's this damaged.  Bladders are a muscle and they don't regenerate tissues or grow as a child grows so we have to just work with what we have now. We are trying to retrain his bladder to empty, but his has never known how, and has been so stretched and beat up, only time will tell how that works.  If he was not able to empty his bladder after the catheter was removed he would need to be re-catheterized and we would try again on Saturday.  If he was again unable to clear his bladder, he would be looking at a permanent catheter.  Usually that is placed surgically, they said they would have it come out his belly button, we would have to intermittently drain it for him, and it would remain the rest of his life.

Thursday was mostly just a waiting day.  We knew it would be.  Roman was getting very stir crazy so he rode his little scooter all over the floor we were on. Then the first floor.  We went outside and went all over the garden and around the grounds. After that his friend Katelyn came to play.  He wouldn't even talk to her. As Katelyn left he said "I just want to go home."  He was so sad.  I think Katelyn reminded him of home too much.  Once again Odessa stepped in and helped.  She took Roman to the play room and played with him and helped him have a better day.  I was able to get a little nap because I was still sleeping with him every night to keep him from rolling in his sleep so I was getting very little sleep at night.  While they were out Odessa found Roman a little backpack that he could put his catheter bag in so he could still ride the scooter around on his own.  He was back to terrorizing the hospital unrestricted!  All the nurses would smile and laugh as he would fly by on the scooter...they would say things like "He looks really sick."  Or "Now why is he here still?  He looks great."

While Roman's friend Katelyn was there, the renal dietitian came in to talk to me.  Thankfully the diet restrictions they had in place at the hospital were more restrictive than we need to follow at home, but many of Roman's favorite foods are now off his diet.  Only 2 small servings of dairy a day, and limiting potassium, phosphorus and sodium.  He has to drink a minimum of 80 oz a day and if we are out in the sun or he's really active he needs to drink 100-120 oz (so HUGE amounts of water, that wasn't a problem before, but he doesn't want to drink it anymore.)  We found out that the nut allergy is very common with kidney patients, but the chocolate is unusual.  (We always knew that Roman was weird.) Many of his diet preferences are related to the kidneys.  She said "If you think things sound unhealthy, they are probably okay for kidney kids."  She said fatty foods are great for him.  Doughnuts, cookies, pop tarts; all good. Tomatoes, potatoes, bananas; bad.  We are going to get it all figured out.

Thursday night as the doctors were making their rounds the nephrologist, urologist and pediatrician all said that Roman was doing so well, they would start the void testing the next morning.  Meaning, they would take the catheter out and let him try to clear his bladder himself.  After he went they have a machine called a bladder scanner and they would scan to see how much was left.  If he could clear his bladder himself he would be able to go home on Friday without a catheter.

Friday morning I woke up so happy.  We were going to go home!  I was going to start packing our bags and our nurse said "Don't do that, you'll jinx yourself."  The urologist came in around 7:30 and removed the catheter then Roman was out terrorizing the floor waiting for his food.  His appetite has grown so much since we went in.  The first night he was able to eat he ordered 3 dinners.  After that we started ordering several items from the menu and he will usually eat everything.  He is so hungry!

We had him wait a couple of hours so his bladder could fill then we had him try to go.  Around 10:00 we took him to the bathroom and we were so encouraged that he was actually able to go.  Then they brought the bladder scanner in and there was as much left in his bladder as he emptied.  We were a little disappointed but stayed positive for Roman.  The nurse was again his favorite nurse, Lacey and she was awesome.  She was trying to help us get him comfortable, keep him happy, and most of all, get him to pee!

About 2 hours later we had him try to pee again and he wasn't able to get any out.  By this time Spencer and Hudson were at the hospital with us and Roman and Hudson were having a great time playing.  The nurse suggested we let the boys take a bath together and I get a shower, let's let Roman relax a little and we'd try again later to go to the bathroom.  Finally around 2:30 we were able to get him to go to the bathroom again, and he was able to get more out, he got about 2/3 of what was in his bladder out, but still had more than they were comfortable with left.  At that point they called the nephrologist who came to talk to us and he said he wanted us to stay another 24 hours to see if he was able to do better over time as he kept trying before they put the catheter back in.  While we were happy he was able to wait to get the catheter back in and we knew that this was what was best for him, after 9 days in the hospital it was hard to face another day.

The afternoon did improve.  We started having Roman go to the bathroom every 2 hours instead of every 4, we were having him double void and he was doing much better.  We had to wake him every 4 hours overnight because we can't chance letting his bladder backup into his kidneys.  Overnight he wasn't voiding as much as they wanted, they wanted him to have less then 100 ml left after going to the bathroom (which is still a lot, considering a normal bladder for his age would only hold 200 ml, but he doesn't have the muscle control to push it all out yet.  We are hoping that will improve over time.)  Overnight he was averaging 150 ml remaining.

Saturday morning the nephrologist came in and gave us some great news.  Roman's creatinine levels were the best we had seen them.  It was down to 1.2 which is the high end of normal.  He thinks that it was very encouraging that they continued to go down even though Roman didn't have the catheter in and was trying to pee on his own.  He thought that the levels could continue to improve and we are hopeful that eventually they will be below 1.0.  He stressed that we are going to have to train Roman to get up several times a night to go to the bathroom, because of the amount of damage his bladder has had he doesn't feel the need to pee so he needs to just learn to go without the "urge."  He was very encouraged that the kidney function was improving and said that if the urology team felt comfortable sending him home where he was at to try for a week they felt comfortable sending him home.

Roman was so sick of being in a hospital room he set up "Camp" at the end of the hall on Saturday.  Be brought his blanket and pillow and he would bring toys and books out to read and play with, and we camped at the end of the hall, that is when he wasn't out terrorizing the floor on his scooter (that he traded in for a car for about 1/2 the day).  He wanted to be out doing things, not sitting in a bed.  Infact, unless they NEEDED him to sit on the bed to check his vitals or to scan his bladder, he wouldn't even sit on it anymore.  He was DONE with the hospital, he was DONE sitting in a bed.  He wanted to be out doing things.

Throughout the day the doctors slowly agreed that he was doing well enough that he could indeed go home!  When we were finally discharged Roman was so happy.  We got out to the car and he just kept saying "I get to go home?  I get to go home!"  He was giggling and just as relieved as I was that we were finally able to go home!  He has lots of follow up appointments.  Right now he will go in weekly which will hopefully go down to monthly by the end of the summer then to every 3 months and eventually every 6 months.  We are so thankful we caught this when we did before more damage was done.  There is still a long road of recovery ahead.  He will have to deal with this the rest of his life, but we are home!

Roman's hospital visit - Part 2 - July 7-10

On Friday night we had been warned that the hospital was VERY SLOW over the weekend.  We probably would need to wait until Monday for the VCUG (voiding cystourethrogram) for diagnostics, but they were still trying to get things in line so that he would be ready for the test.  His kidney function was much better than when we first arrived, it was still not great.  It was around 1.5 now which was still high.  The goal for the weekend was to get his bowels cleaned out, infection under control, and kidneys processing.

Saturday I needed a break from the hospital so I took Hudson to the zoo.  It's only about 5 minutes away from the childrens hospital, and it was nice to have a few minutes to snuggle with my sweet baby boy and process everything that was going on.  I was now sleeping with Roman every night to hold him so that he wouldn't roll in his sleep which meant that I wasn't getting much sleep (Roman is not a very still sleeper, I was constantly being hit or he was moving and I would have to make sure that all the wires and tubes were okay.)

Saturday night they did a blood test to make sure that vancromycin was clearing Roman's system.  Because of the decreased kidney function the levels were extremely high in his body still so they had to skip his dose that night, and again the next morning.  The good news, in that time they were able to isolate the strain of infection and what antibiotics would work to fight it.  The bad news was that there were only 3 options.  The Vancromycin, another antibiotic that was also processed through his kidneys or a sulfa drug that he may have been allergic to.  We decided at that point that the safest route would be to try the sulfa drug and watch him closely for allergic reaction.  Thankfully he did not react to the septra (sulfa drug) and he was able to take that to help with the infection.  On Sunday the doctors wanted to be more aggressive about clearing Roman's bowels, by this point he had been on a high dose of Miralax and clear liquids only for 4 days but they thought there was something stuck high up.  Roman's nurse, Lacey wasn't convinced there was still anything left in him so when the doctors ordered an enema on top of all the other laxatives she basically said "prove it!"  She said if they did an x-ray and there was still a blockage she would happily do it, but she didn't think there was anything left in him and she didn't want to traumatize him further.  So they decided to wait until Monday for the enema and ordered an x-ray for Monday morning.

Monday afternoon we were given good news, Roman's bowels were EMPTY, the infection was under control enough they were able to do the test, and they felt that his kidneys were finally able to process the dye.  So they scheduled the VCUG test for Tuesday...sometime.  Also that night Roman's birth mom got here to see him.  She was supposed to get in that afternoon but she missed her flight, so they (Mommy Katie and her adorable baby, Betsy) didn't get here until about 9:00 that night, she stopped by the hospital that night to say hello then she spent most of the next day with us at the hospital.

Thankfully they got him in for the VCUG fairly early in the morning.  Roman is a very private person and this hospitalization was very hard for him because there were so many people invading his privacy.  We went in for the test and they were able to use the catheter he already had to inject the dye into his bladder then they had to remove the catheter then they like to take pictures of the urine draining out.  The problem is, who wants to pee in front of an audience of 5 people?  The tech kept saying "It's okay, your mom will catch it, we aren't watching.  After trying for about 15 minutes they finally just took a series of x-rays then sent him to the bathroom then took several more.  The radiology technician told me she couldn't diagnose but she didn't see the valves (later found out she meant the ureters) leaking at all.

They were told to wait and have the urologist re-catheterize him because it was so traumatic the previous time so Roman was able to go almost the entire day without the catheter.  He was back to his usual crazy, out of control, into everything self.  It was so good to see him back to being silly and into everything.  The Child life specialist, Odessa came in that day and let Roman paint his window, she found him a scooter that he rode all over the hospital, he went and played in the playroom with Odessa.  We were all laughing at Roman and his silly self.  Then the urologist came in to talk to us about the results from the VCUG and to replace the catheter.

The VCUG showed that there was a lot of damage to his bladder, it should be smooth and soft, his was rough and rigid.  They also could say that the problem was the posterior urethral valves.  It was a problem from birth that had been missed and had just gotten worse over time to the point that it was not draining at all.  They scheduled Roman for surgery the next day and had to talk to me about all the possible risks involved with the surgery and about the problems he may/will have because of the damage to his kidneys and bladder.  It was all so hard to hear then to make matters worse, they had to put the catheter back in and I literally watched Roman go from silly, crazy to crest-fallen and sullen.  The first thing he said after the catheter was back in was "I can't ride my scooter anymore."  And he started to cry.  The urologist also told me that Roman needed to be on a renal diet, but he was okay to have dinner that night.  I called down to room service to order his dinner, he REALLY wanted some Mac and Cheese.  About 2 minutes after I ordered the kitchen called back and told me they were sorry but they couldn't get him mac and cheese, it was not part of his diet.  At that point I lost it.  Thankfully the kitchen worked some magic, he can have egg noodles and low sodium cheese and butter so they made him his own version of Mac and Cheese, which he loved.

As soon as I got the food arranged I excused myself and went out to the patio and cried.  I cried because my crazy boy was gone again.  I cried because he couldn't have the Mac and Cheese he wanted so badly.  I cried because he would never be able to eat school lunch.  His whole life was different now.  It was like everything hit me at once and I was so sad for my sweet boy.

Roman's hospital visit - Part 1 - July 4-6

On the 4th of July Roman had been complaining that he didn't really feel well, hadn't really wanted to play in the afternoon, but we just thought he was tired.  It had been a busy day and we had so many things going on.  We were out in the sun most of the day at the Sandy 4th of July Celebration and then a BBQ/water party at my sisters house.  On the way home Roman fell asleep.  He was wiped out!  We had gone to the pediatrician on Monday because he was struggling with constipation, he has had troubles with it and he was really distended again.  She gave us a new Miralax regiment but he was still struggling.

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!

It was about a 45 minute ride to Primary Children's Hospital.  They were expecting us when we got there and they got us right into a room.  The ER doctor came right in and told us that they had already called urology.  Their biggest concern was getting the urine out of his bladder/ureters/kidneys.  They put a catheter in and drained 600 ml then an hour later another 200 ml.  We were in the ER most of the night waiting for the urologist to see him.  Finally around 4:00 am he came in and was shocked that we hadn't known there was a problem before.  Roman's creatinine level (the protein the kidneys process, so it shows how well the kidneys are processing) was at 2.6.  Normal creatinine level  is .6-1.2, for a 5 year old it should be about .7.  So it was more then triple the normal level.

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.

That first day we talked to lots of doctors, they all had different time frames they were looking at, but they all agreed that he needed to stabilize some before testing/surgery.  That night they took him for an ultrasound of his kidneys and ureters.  The ultrasound tech showed me his kidneys and how they could see damage by thinning tissue.  He also showed me that because we could see the ureters it wasn't good.  They were still fully dilated.  The ultrasound we found out was mostly just a baseline so they could compare as we hopefully continue improving.

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.