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!