Update on Ammon - Painful Pee

Just a quick update on how Ammon's doing. I'd love to report that all is well .....but I'd be lying. Unfortunately, Ammon has had a LOT of pain when urinating. He held his urine ALL night Monday night (of course....the one night I actually want him to wake up with a wet diaper, he keeps it dry). As he started to pee in the morning the pain woke him up and he refused to let the rest out. He held it, and held it, and held it. He runs around, and around, and around and jumps all over the place to keep from peeing. I thought his bladder would explode. When the hospital called to check on him that morning (around 10:45 am), I told them he still had not urinated. They encouraged me to give him more water so he wouldn't be able to hold it any longer (and it would dilute it so it wouldn't be as irritating). He drank the water well, fortunately. But he kept refusing to go pee. I kept telling him that if just lets it out it will probably only hurt at first, but it will feel better. Finally, Grandma and Aunt Doreen stopped by at just the right time and brought Joe & Connor. This provided enough distraction that he just couldn't hold it any longer and he ran into his room and let it out (fortunately we still had the diaper on him because there was no way he was going on the toilet in that agitated, can't stay still state). He was so relieved to finally have it out. He said with great emotion and fists pumping for emphasis, "Mommy, I did it! It hurt at first, but I kept going and D I D N ' T G I V E U P !!!" That was too cute. We were so grateful for Grandma and Aunt Doreen stopping by at just the right time. That was an answer to prayers for help!

We were so relieved and thought the worst of it was over. Fast forward a few hours. We had continued to encourage him to drink a lot of water, so now it was time to go pee again. He was nervous, yet we convinced him to just try to go pee. Well, as soon as it started to come down the "tube" he started screaming and jumping around in pain. Oh no, not again. Yep, we went through the same thing. Ammon said, "I need Grandma and Aunt Doreen to come back again!!!" Well, to make a long story short, it was another fight to get him to finally let it out. And it's been that way every time ever since. I called the doctor's today and a nurse called me back around 3:45 this afternoon. She said it's not unusual for them to still experience pain a couple days afterwards, and that the older children seem to have a harder time than the babies. Yes, I can see that! Probably because they are more aware and can express their pain and fears. Now I know why he was so miserable when he had MUCH MORE than this done at 13 months.

It has been very rough 2 days post-op, and it's not over yet. I know part of the problem is the pain, but the other factor is he's now very anxious about going pee. I'm sure the anxiety and holding urine WAY TOO LONG add to the pain. I've tried using breathing exercises, relaxation, etc to help him overcome his fears and relax.....but they aren't working.....or at least aren't working well enough.....yet.

A lot of tears have been shed, and not just Ammon's. For those of you who think I'm so strong, you should see me the last couple days. I have a really hard time hearing Ammon scream and cry and carry on like this. It grates on my nerves, especially when my pain and fatigue levels from my Fibromyalgia are as high as they've been lately. And in the frenzied state that occurs for about an hour or more before he finally pees, he doesn't listen and is very difficult to manage. So, it's been a good thing Jared's been home to help out when I'm at my wits end. Unfortunately, it's taken time away from studying for his mid-terms this week.

The last two days have made Monday seem like a walk in the park. Mott's did an awesome job preparing us for the surgery, but no preparation for what would come afterwards - when they're at home under YOUR care. That has been much harder to deal with. Now I REALLY pray Ammon won't have to have anything else done down the road. After he started to experience the pain Monday night, he said through his tears, "What did they do to my pee pee? I don't want to go back there again!!" Uh oh. That's not good.....

Anyway, tomorrow is a new day and I'm hoping and praying for the best. Hopefully the pain will be gone and he will be able to get over his anxiety. And if not, I'll be praying my heart out for patience and guidance to know what to do to help him.

Well, that's my update. So much for being quick!!! (I'd be rich if I was a writer and got paid by the word!!)

Ammon's surgical procdure is done!

WHEW!!! What a day. Ammon's surgical procedure was delayed over 3 hours!! Instead of 3:15, they didn't start until almost 6:30 pm!!! Ammon had not had anything to eat since 8 am and nothing to drink since noon. I really don't like having afternoon surgeries. It's hard enough for little ones to go without food or drink during the day like that, but by the afternoon things often get backed up which means a delay, meaning they have to go even longer without eating or drinking. FORTUNATELY, they are prepared for such situations and have lots of toys and things in the waiting area and they even had a Wii system. This was a total life saver! Ammon has only played a Wii (the only system he has ever played) a couple of times. He had a total blast and it made the time go by faster. His favorite was a driving game. You should have seen him boxing with his daddy! HILARIOUS!!! I was laughing so hard I had tears coming out my eyes! He was entertaining everyone else in the process!!! Unfortunately, he couldn't play that game for long. He seemed to get tired and a bit dizzy, probably from not having had anything to eat in nearly 10 hours (or drink in 5 hours).

ANYWAY....the procedure went great. The medical team was awesome. The anesthesiologist let me come into the OR with Ammon and stay until they put him under. What a surreal experience that was, let me just say. It was SO HELPFUL. Ammon seemed totally comfortable and it wasn't traumatic for him at all. Jared and I were just settling into the other waiting room and trying to eat our food we brought (we were starving too....we hadn't expected to wait that long), when Dr. Wan came walking towards us. At first I thought, "OH NO! WHAT HAPPENED!" He must have read the surprise on our faces and said, "Everything's great!" He said they were able to dilate it wonderfully and everything looks great all along his urethra and into his bladder. He hopes this will take care of things. We have to keep an eye on it for the next 3-4 months and come back. If it's still not right, he will have to go back in and re-do the tip (more reconstructive surgery like he had as a baby). I PRAY HE DOESN'T HAVE TO DO THAT!!!

Anyway, Ammon did great. He really was wonderful all day. We had a couple small melt downs at home before we left, but he was a real trooper the rest of the day. The nurses all said what a wonderful job he did. You should have seen how fast he devoured the popsicle they gave him in the recovery room!!! Then he must have eaten a dozen graham crackers. Unfortunately, the anesthesia made him overly emotional so he started crying at the drop of a hat. That was challenging!!!!!!!!! Fortunately, most of that wore off by the time we got home.

HOWEVER, we were warned by the doctor that the first one or two times he urinates it will be very painful. Well, when we got him home, we fed him and started to get him ready for bed. When he went to go pee, he started screaming!!!!! I think the neighbors probably heard him screaming!! Ammon has a very high pain tolerance, so I knew it had to hurt bad. We tried to get him to calm down and try going again....but he wouldn't have it. I tried putting him in a bath hoping that would help him relax a bit and finally pee. After 15-20 minutes of that not working, I called my mom and she and Doreen both confirmed what I had been wondering.....that he might be so sound asleep tonight from the anesthesia that he might sleep right through the pain when he pees. So, I got him ready for bed (glad for a change that he still wears a diaper at night) and told him what Grandma and Aunt Doreen said about how it might not hurt if he pees in his sleep. He was so happy he was practically shedding tears of relief. He said, "Oh, THANK YOU Mommy for telling me that!!! Thank you so much! I DON'T KNOW WHAT WOULD I EVER DO WITHOUT YOU!!!" What a precious Mommy moment! Thanks Mom and Doreen for helping make that one happen!

So, he was finally in bed and I walked out of his room about 10:30 pm. WHEW!! WHAT A DAY! I'm happy to report that he went right to sleep and I haven't heard any screaming!!! :)

Poor Jared had to rush to finish working on his assignment due by midnight tonight. Fortunately, he just finished it!! It would have been nice if he had a lap top he could have brought today. Then again, we waited FAR LONGER with Ammon than we waited without him (4 1/2 hrs versus 1 hour), and keeping Ammon happy while waiting seemed more important than school work.

THANK YOU ALL FOR YOUR THOUGHTS AND PRAYERS!!!! And thank you for all the kind words of support, faith and encouragement. It all helps so much. Like Ammon said, "I DON'T KNOW WHAT I WOULD EVER DO WITHOUT YOU!!!!"

Thanks for helping our little family out once again.
Love,
Suzie

Ammon is having a surgical procedure Monday!

Ammon will be having a surgical procedure this Monday (July 19th) under general anesthesia at Mott Children’s Hospital. It is a cystoscopy, EUA and urethral dilation. Basically they will use a tiny camera to go into his urethra to check things out and also dilate the opening of his urethra. Besides being born with a heart defect, the poor little guy was also born with another defect (hypospadias) which had to be surgically repaired when he was a baby (after his heart was stable….so not until he was 13 months). The urethra opening now seems to be constricted, so the urologist wants to dilate it to see if that will fix things. Hopefully, the urologist won’t find any other problems along the way. It should be an outpatient procedure.

Unfortunately, the surgery is scheduled for 3:15 pm. So, he can’t eat anything after 8:00 am. This will be a problem for Ammon. He normally eats every couple hours, especially during the first half of the day. I always joke that he eats breakfast, then a second breakfast (as big or bigger than the first) before eating lunch. He seems to metabolize his food fast, so he needs to eat frequently or he gets irritable and sometimes out of control. I’m trying to figure out how I can keep him happy all day without any food. He can have water, apple juice and pedialyte up until noon. I’m making a list of activities we can do to keep him distracted. Fortunately, he LOVES to read books (actually he can’t read yet, so we read to him). Right now he has 67 books checked out of the library! So, obviously we will be doing a lot of reading Monday. I’m also going to let him take a very long bath. He loves baths!

We went to Mott’s a week and a half ago to visit the Procedural Readiness Center, and they had someone explain to Ammon what will be done the day of the procedure and showed him around. They also gave him a “doctor bag” of goodies to bring home (several masks, those blue surgical caps they wear, vinyl exam gloves, and a few other medical supplies) to help him get comfortable with all of that. Well, you’d think it was Christmas morning for him!!! When we got home, he played with these things for 2 hours straight! Now he’s actually looking forward to going back. I love Mott’s!!!

Here's are some pictures of Ammon playing surgeon. He has 4 surgical hats on at once. And notice that he has the vinyl gloves on his hands AND ON HIS FEET!!! He insisted on that!

Here he is working on his patient (his teddy bear he named "Zero.")
"Oh no! I forgot to put his heart back in before closing him up!"

In the next one it looks like he's doing CPR on his teddy bear!

Jared then gave Ammon a pizza cutter so he could pretend to operate on him (he's so silly and sick all at the same time). Funny that Ammon immediately went right to cutting open his chest to do open heart surgery.

When he listens to our heart with the stethoscope and can't hear anything he says in such a matter of fact way, "Well Daddy, I guess you don't have a heart."

Jared's surgery was a success!

I just wanted to post an update that Jared's surgery went well and he's fine. The surgery took longer than expected (nearly 3 hrs instead of 2), because it was hard to remove along the jaw. The cyst measured 8.5 cm by 5.5 cm, so it was a big one.

Here's a picture of him just before he went in to get the drain tube removed (June 28th).

And here he is after getting the stitches removed (July 1).

He was rather disappointed when he found out that the ENT he went to also does plastic surgery, so he did an exceptional job stitching him up. He said the scar will barely be noticible after it heals. He was bummed because he was really looking forward to telling the kids tall tales about how he got the scar on his neck. I'm certain it had something to do with pirates. That's Jared for ya!!