pre-Christmas update

It's been a very good week thus far and I owe you guys an update... plus a little Christmas gift link to the funniest thing I've seen/heard all year. Read on.

To open, I heard from my friend Greg early this week. We had a great conversation and I'm very happy to report he's in as good a shape as I am and not back in the hospital or anything. He had some trouble with his sutures opening and infection starting but got a quick handle on the problem and did not have to be readmitted. His back has been trouble for him too and I shared the stretches Dr. Shaw had suggested to me.

Those have been paying off along with heat and some focused time on my feet getting out and about. My back still isn't 100% but it is getting there. I've been well enough to have tried to go shopping, drop in on my team at their offices for a Christmas luncheon, and driven myself back to GBMC for a checkup on my stoma.

Shopping has been tough and I pretty much stuck to getting the things I needed right away and getting back home. It was great fun to visit with a bunch of my coworkers and catch up with the news at work. They even got Jody and I a gift card for FYE that i think we may use for some music and games for Christmas. :) The trip to GBMC was the biggie though...

It was good and bad news up there. The nurse was impressed with my and Jody's handle on caring for the stoma and in the choices of products to use. She is concerned that the skin around the site is a little chewed up from exposure so she showed me how to use the Adapt paste instead of the Eakin seals to get a little better fit. So far though, the paste alone is not lasting quite as long as the seals and we may try to double up so that the skin is better protected and the pouch flanges last their full use. I had to exchange one yesterday by myself and it is already showing signs that it will not last through today. :(

I wish it weren't Christmastime because I feel I've been robbed a little. So much has gone on recently that I have had no time or even the thoughts of trying to choose gifts for anyone. So, in a rather cheap way I offer up a link to a seriously funny Sir Mix-a-Lot cover.

Merry Christmas, everyone!

first day on my own

It's mid-day, Monday the 17th. I'm home alone for the first time in... I cannot remember.

I'm doing okay. I did not sleep very well again last night as my back is still bothering me. I got up around 6am and got some breakfast in me; Cheerios. I vegged in and out of sleep with Saved By The Bell on television. It's my secret guilty pleasure. Jody got ready for work and headed off a little later and I hobbled around a little before laying down again for 2010 which was funny to watch. As if the Soviets would still be a problem in that year. The moral of the story was to tell HAL the truth and trust that he/it would cooperate in saving the astronauts and cosmonauts lives.

I'm psyching myself up to go for a walk outside. I know I need to do more walking and that it will fix my back right up. But it looks cold. I may try to go to a shopping mall and walk indoors instead but I'm still spooked about losing integrity of my ostomy bag. It's happened a few times now and all I've been doing is laying around. :(

I need to make some phone calls and do some paperwork too. I'll do those when I get back from my walk... because dangit, I need to be able to sleep without my back hurting me!

prayers, answered

You know, it really is good to have a faithful God in heaven who hears and answers prayers.

My back is still the big problem but my worries about infection at some of the incisions are over. The staples came out on Tuesday last just in time for a bag change. I was in tears praying beforehand that the new two-piece ostomy bags would work well but afraid that they might fail too.

I believe God already had that answered last week when I ordered (blindly). I am happy to say the new ostomy supplies are working the way we need them to. God definitely put us in the right hands with the pharmacy as we got excellent recommendations for products to use and clear advice on how to apply them. The first bag swap from the new supplies has lasted three days now! And the two-piece bag is sooooo much easier to empty and clean. I do wish they had the little gas filter and a more solid bottom opening, but the two part design is much more livable than the one part stuck to me like I had in the hospital.

I've also been able to temporarily get some relief for my back using a little leftover oxycodone (Dr. Grasso said it was okay) and a rolled up beach towel right about where I wear my belt. It just occurred to me like :bing: I should try this. While laying down I can get my lumbar lifted back where it's supposed to be and give my muscles a big break. It's not the answer, but it's working in the meantime.

I'm worried about my friend Greg as I've not heard from him in a while. Imho, he got shafted with his ileosotmy. He was not told it could happen to him until right before his surgery and he did not get any advance education. If he's had the same troubles I've had, I know he's feeling pretty blue. Please, pray for Greg too. :(

prayers, please

Hello from home, still. It's been a rough few days with several challenges and I need help.

For openers, my ileostomy has been a very big hurdle. Jody has done an outstanding job of helping thus far with what is easily the grossest thing. The trouble is one of my incisions is very close to the stoma site and the bags that attach there are too easily foiled by the refuse escaping into the bag. It wets and works its way along the incision causing a predictable leak and inevitable infection in the suture itself. I have supplies coming to help dam this area and make the bags more reliable, but they do not arrive until tomorrow nor am I an expert in applying them just yet.

Second has been the trauma to the nerves below. Both my large bowel and bladder are nearly numb and I have to work to sense when they need to be emptied... or stopped. Two accidents during the nights so far have humbled me and I know nothing I can do but pray and wait for the feeling and control to come back. I am trying some clenching exercises in hopes of jumpstarting the automatic controls, but I know I need real healing.

Finally, my lower back has been an absolute spaghetti knot of spasm. Mom guesses it is from an extended period in stirrups in surgery, but I do not know. All I do know is I hurt. Massage and Tylenol have only dented the problem and I'm dying to visit my chiropractor. Unfortunately, he has shied away from seeing me so shortly after surgery but he sympathizes and told me he'll be there as soon as I can take an adjustment session. For now, I just need some relief more than traction at home has given me.

Otherwise I'm doing really really well. My appetite is back despite having to think about chewing everything real well. I am sleeping a little longer at night between interruptions. Both of my Moms are here with me today and I'm feeling alright. It's just these moments that hit me a little harder than normal that I need the most help and I pray for faith and strength to get through.

spinning

Last night was tough. It is a relief to be home, but it took so much energy to get here that I think I've lost something. Sleep came in small chunks and various contortions but my dreams were horrifying. I kept floating through some sort of clandestine backwoods surgery where doctors were strung up on bungee cords being threatened to perform procedures or be shot. I didn't know if I was one of the patients or one of these terrorist dudes just that I was scared to death and I could do nothing to force my mind to more pleasant things. I emptied my ostomy bag several times through the night and Jody snuck away to sleep elsewhere at some point. I wavered from freezing to stiffling. At one point I put my head down by my feet and curled up with Hurley and it was the most calm sleep I got all night. I'm not sure what I'll do, but I just pray for some normal pattern.

In the world of the awake, I have an appointment today with a home care nurse in just another two hours. I have a followup with Dr. Grasso next week to have the staples removed. I see Dr. Lee on the 18th for a visit and will visit Nurse Simpson back at GBMC on the 19th to report how I'm getting along with the bag.

Speaking of the bag, it will be with me a bit longer than first expected. I see where Jody learned why, but I learned why differently. It was a blow for sure and pushes my dreams of track driving my Bimmer back to the end of next season instead of the beginning. I'm just thankful for the success Dr. Grasso had with the j-pouch and I got the feeling he was thinking of me and the car when he put in those extra hours to avoid a permanent ileostomy... that would have sentenced me to the grandstands.

I need to call CIGNA to start the long-term disability process that will certainly kick in now that the surgery has dictated a longer calendar. Jody and I will need to prepare for the impact to our budget and adjust accordingly.

Realize some of this is just me being methodical and staying focused through some really weird sensations and unusual pain. Tylenol does a little good, but these weird muscle pulls and constant indigestion are persistent. I feel like I could use a good belch almost all the time. It's probably a sign of hunger so I'm going to get some breakfast and get ready for the home care nurse.

Please, say a prayer of thanks with me today. I am so happy to be home, even in this shape. I am just thankful to be on the other side and heading -out- of the woods instead of deeper in.

I am home...

Yes, I am home. I've not kept up with Jody's entries (blogger.com wouldn't resolve on GBMC's very low strength wireless network) but I will regain some strength and act accordingly. I've done more work just getting home today, through our first snow no less, and -finally- getting a shower that I've just not got the strength to write much tonight.

I can go no further without stopping to thank God for being faithful to me and answering every prayer I lifted up this week. From giving me the strength to endure the tube to getting my bladder under my own control last night, all of the steps I was able to accomplish were answers to my prayers. Being released home and a safe drive through the weather were only just today.

I will write more, soon.

The tube is gone!!!

Woooohooooo!!!! We're celebrating today! They finally removed the tube today from John's stomach!

Thanks for the prayers and positive thoughts - it was definitely needed.

John drank his first few sips of water today, followed by tea and soup for dinner. He was finally able to get the nourishment he's been needing.

His stomach is working again!!

And that's the first step in his recovery.

Still going strong

Hi all - Jody here again.

Sorry I haven't updated you lately! I've been spending every moment I can at the hospital. I'll try to catch you up:

Friday - I arrived to find John sitting up and looking great! He had a great deal of pain in his abdomen, but less than the day of the surgery. He felt well enough to get up and walk the halls 4 times!! He was able to eat jello, soup, and Italian ice for breakfast, lunch and dinner! I helped change his ileostomy bag (not as gross as I was expecting) and it was generally a good day :)

Saturday - I arrived to find a "Nothing by mouth" sign on his door. I immediately knew this was not a good sign. I walked into his room and found he had a brand new tube... this time coming from his nose. He had started throwing up bile during the night and Dr Grasso prescribed a tube to drain his stomach. There was too much bile in his stomach and it wasn't passing through to his intestines, it was instead going the other direction. The green bile was coming out of him in such large quantities I was a bit scared. He was so good on Friday and now he looked terrible. The nurse said it may have been a reaction to the meds or to the anesthesia during surgery. He felt a little better by the end of the day and we were hopeful the tube could be removed the next day.

Sunday - I was hoping to walk in and find his "Nothing by mouth" sign removed, but no such luck. He still has his tube today. They tried removing the pump (while still leaving the tube in) but after an hour when they pulled back on a large syringe to see how much was still in his stomach - there was still A LOT of green bile coming out. He ended up throwing up again and getting the tube re-connected for another day. This is the second day of no food and no water except an ice cube every 15 minutes. He's very weak and uncomfortable because of the tube. Pain wise - he is feeling much better and they were able to remove his pain med pump. He's now getting a pain/anti inflammatory med every 6 hours. I hope the removal of the pain pump may help the stomach issues - he mentioned he was very itchy too - so he may be having a reaction to the medicine.

Keep you fingers crossed that when I go to see him tomorrow - the sign and the tube will be gone!

Thanks for all the prayers and notes...

Oh! I almost forgot - Yeah Greg! I'm so very happy to hear your surgery went well :) John will be very pleased to hear to good news!