16 Days Post op rc

Hi Steph.
His robe,slippers if he is into music bring his Ipod or walkman he will be walking by the second day and the halls are cold lot's of pictures of your son tell family members to stay away for the first couple of days as he will need his rest ( not easy) and lots and lots of patience. if you need to talk call us.
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Let us know ASAP how he is doing!!!!!

Tim & Kathy

Thanks for the fast response. He got a robe and slippers for Christmas so they are packed. Music is as well. I appreciate the tip about family, I imagined he would not be ready for company until probably after the weekend. My Dad has a laptop with wireless internet access, so I hope to get to give you an update ASAP. If not, I will get one of my parents or my sister to update you.

Thanks so much. I appreciate your phone number. I have printed them and this web address out so I'll have all my important stuff easily available.

I will be in touch soon. Thanks again. I can't WAIT to get this over with. The anxiety in my stomach is killing me. Thank God you had a positive outcome and experience...that is what I am focusing on.

Take care, Steph

Hi Tim & Kathy,

I have been so wanting to give you an update but haven't had the chance. We STILL do not have highspeed access at home & I ordered it on January 8! Anyway, I stopped by my work today so I thought I would drop you a line. Shawn was released from the hospital on Wednesday, January 11 about 1:00 PM. We had an uneventful return to Louisville and so far he is doing great. He is managing his pain well with the meds Dr. Koch prescribed and he is up and walking around a bit. We are irrigating the cathetar about every 4 hours and just as you stated, egg drop soup...gross. Tim, everything that you told us to expect has been right on the money. They had him up & in a chair the day after surgery and by that afternoon he was walking the halls. His biggest complaint post-op was that he was thirsty. When we saw him in recovery he DID NOT have the tube in this throat as we expected, Dr. Koch removed it before he came out of recovery, so that was good. By the time we were being discharged on Wednesday, Shawn said he was ready to go home, that he was tired of looking at the same four walls.

Since we have been home, things have been fine. Much better than I ever anticipated. He takes several naps throughout the day and watches TV & movies and plays a gameboy that he got for Christmas. We have been playing lots of Yatzee & 500 rummy and reading. The other day he wanted to go with me to Home Depot, but we decided it was too early; it had only been a week. His appetite is good, he is eating everything I put in front of him. The day of surgery he weighed 161 & when we left he weighed 151. Not sure what he weighs today, but according to my Mom he looks skinny.

We go back to see Dr. Koch on January 26 for 2 tests & if everything is OK, they will removed the cathedar & teach him how to use the new bladder. We are still waiting for the pathology report to determine if he will need additioanl chemo, so keep your fingers crossed a little longer for us!

I hope your recovery is continuing to go well & I am so glad that Shawn's experience has been as good as yours. Hopefully that will continue to be true!

Thanks to you both for "listening."

Stephanie

Hi Steph,
Wow what great news we were starting to worry when we did't hear from you. The only thing I did't tell you guys about was the thirsty thing.
The only thing they would give me was a sponge on the end of a stick and I had to squeze out all the liquid before I could put it in my mouth it was 5 days before I could have something to drink this was the worst part of the whole thing hands down. The first thing they gave me was apple juice I never realy cared for apple juice before but now it is my drink of choice how funny is that!Tell Shawn to enjoy the time off it will fly by and in no time he will be back to the same old same old.
I think I told you before that this is a 2 stage recovery stage one is with the cath stage2 without go to www.depends.com and print out coupons he will be doing the diaper dance soon pick up two or three baby crib pads I put the pad down and then a towell over that. I have good control at night now as long as I set the alarm for every three hours my neobladder is at or near the 500cc mark and I can go two hours durning the day go to your local medical supply store a pick up a thing that fits in the toilet to measure the amount of pee-pee once the cath is out it's good to see what your doing I keep a log book with the time and amount so I can see myself getting better some days are better than others but every week there is improvment. Kathy and I are so happy to hear this great news and I know the good reports will keep comming.

Tim & Kathy

Hi Tim & Kathy,

Things are just about back to normal for us. Shawn is doing well and talking about getting ready to go back to work. I think he is jumping the gun just yet, but he will probably be back in about 2 weeks. Today is exactly 4 weeks post-op. Dr. Koch still doesn't want him lifting more than 10lbs. and Shawn still gets very tired after any activity. He has good control of the new bladder, although it is rather time consuming for him to empty the bladder. Was/Is that true for you as well, Tim? He is setting an alarm throughout the night (every 3 hrs) and that seems to be working too. He is limiting what he drinks in the evenings also. Shawn is a restaurant manager so when he does go back to work, he will be on his feet a lot & moving around a bunch. I think he needs a couple more weeks to heal before he is ready for that.

When we went back to Dr. Koch to have the cathetar removed, we got the results of the pathology report. Shawn is now CANCER FREE! NO MORE CHEMO! We were both so excited! We did however learn that Shawn's prostate had cancer. They had already removed it, so it wasn't an issue, but we were surprised to learn that. I am so glad Dr. Koch had taken it initally because I would have died if they said we were going to have to start over!

How are things now for you, Tim? Are you 100% back to yourself? I can not believe how far Shawn has come in the past 4 weeks. I agree with you completely...it is all about having a good surgeon; that and a good attitude!

I hope all is well with you both; looking forward to hearing how you are doing.

Steph

Hi Steph,
Tell that boy to listen to his doctor!!!!! at four weeks he might feel ten foot tall and bullet proof but he is not. have him look up what a hernia feels like, the recovery is worse that the RC also the neobladder is attatched to the abdomen wall and straining can cause it to pull away that's not a good thing.I set the alarm one time a night and I can go 2-2 1/2 hours durning the day. I walk on my treadmill 45 minutes a day a feel great. I did take some time to void at first but now it's back to normal although I sit 99% of the time I still can't get it 100% empty standing and most likley never will (a small price to pay) the hardest thing for us guys is to keep a steady pace once we start to feel better we want to go man go. Don't let him have a set back not with as well as he is doing. I talk to guys that are 6 months post op that have to get up four times a night and can only last one hour durning the day so let him know how off the charts he is doing.how much is he voiding at night? he dose not want to stretch the neobladder to fast one of the biggest problems I see is letting the neobladder get too big it leads to having to self cath no fun remember 400-500 cc's is all we want that bad boy to hold. Kathy and I are so happy for you two and kudos to his doc for taking the prostate. As the old saying goes time heals all wounds so let him know his time is not up yet almost but not yet.

Tim & Kathy

Hi Tim,

How is it going? Things are going well for us. I shared your words of wisdom with Shawn about the hernea and the neobladder being attached to the abdomen wall and the importance of him continuing to be careful. I appreciate all of the info. He is being careful, but I am having a hard time holding him back any longer. He did go back to work yesterday - it had been a little over 5 weeks. Dr. Koch approved that so I didn't really get to say much after the Doc approved it. He is only working 3 days a week and he is working short days, so I guess that is a compromise.

I was remembering that you told me after your surgery, you noticed that you had a change in the types of food you craved. Shawn hasn't noticed too much of that, but he definitely has had some changes in his sleep patterns. Did that happen to you? We will go back to Dr. Koch next Thursday and ask him for advice, but thought maybe you could shed some light on the subject. He is waking in the middle of the night, sometime because of the alarm set, sometimes just because, and he can not get back to sleep. He is stalking around the house at 4:00 AM. It hasn't been too much of a problem because he wasn't working, but now that he is back to work, he really needs to get a good sleeping pattern. Any advice you have would be appreciated.

Also, do you limit your intake of beverages after a certain time of day? He is not. Dr. Koch said just to continue to drink as always so he is. The problem is that he is setting the alarm for 2 or 3 times throughout the night, then he can't get back to sleep...it is a vicious cycle! I also noted that you set the alarm once a night...that sounds better than 3. Shawn is a VERY heavy sleeper and I usually hear the alarm before he does. We may have to go to separate bedrooms before long!

I hope your recovery is still continuing to go well. I am so happy to have Shawn back - he was so sick with the chemo for what seemed like so long. The surgery recovery has been a walk in the park compared to the chemo. We are now back to enjoying the simple things in life! Hope all is well with you & Kathy. Steph

Remember when I said this is a two stage recovery and the surgery was the easy part? First thing is to stop drinking two hours before bed make sure he is getting at least 64 oz of liquid a day but not much more.It took me three months before I could go once a night. There are a couple of options here. 1 he can just pee his depends and go on sleeping as long as he does pee and doesn't stretch his neobladder.2 you can get what they call a Texas catheter it's a condom with a hose that goes to a bag any medical supply store will carry them or you can go on line.#3 is the way he is doing it I think it will have the best outcome in the long run.I never had a problem getting back to sleep nor does Kathy. It is a tough road for the first few months and I don't think anyone gets the sleep they need and that's something I was mad about that the doctors don't tell you.Dr.Koch will most likely give him a sleep aid. Until I stopped drinking two hours before bed I was up 2-3 time also. I hate seeing you go to separate beds but you wouldn't be the first. this is going to take some time and there is no way around it. Have him try a ear piece that is hooked up to the alarm this way you will not hear it and if its loud enough it will wake him.I think the best choice is to wet the bed if he can get over it. whats happening with me now is 9 out of 10 nights my body wakes me before the alarm also make sure you have night lites in the bathroom so the bright lights don't wake him.and one last comment he is doing great it takes 6 weeks before you can go back to work but it takes months before you start to feel normal.
I hope this helps.

Tim and Kathy

Hey Tim & Kathy,

Thanks for the words of wisdom. I was half-joking about seperate beds; it really isn't THAT bad...yet! It is taken me back to the days of having a newborn in the house. I totally agree with you that this is what is best for the long-run. And I already know that it is getting better everyday. I know that as time goes on, it won't take him so long to go; it still takes him quite a bit of time to empty his bladder.

It is very encouraging to hear that you are able to wake yourself up before the alarm.

I think Shawn is going to cut back on drinking in the evening. He used to be a major coke drinker...probably 3 or 4 a day; now he can't tolerate it much & drinks mostly water & Ginger Ale. He says the caffenine makes him
have to go too often. Does caffenine bother you?

Well, thanks again for the response. I think Shawn is doing great and I'll just suck it up throughout the late night wake-ups! It is a small price to pay. Talk to you later, Stephanie

Glad to hear you were only kidding and yes it is a small price to pay. Caffenie does make you feel like you have to go more often I am lucky in that I never have been a big soda drinker unless it had rum mixed with it and I don't drink anymore because I am trying to lose weight. Today is a big day for me I just got off the trail and made it end to end for the first time 4.5 miles in one hour 12 minuets tell shawn to stop his caffenie intake after noon and see if that helps but I think the biggest help is going to be time, with me it just all of a sudden happeded.

Keep up the good work

Tim & Kathy