Tuesday, November 24, 2009

We're Home!

Oh boy, is it ever nice to be home and sit in your own furniture! We've had people call thinking they were coming to Nashville, so I wanted to post and say we are home. Come on by. We will probably stop visiting hours by 7:30 so we can figure out showering-all kinds of new parts in the shower.

I am adding some things that I was waaayyy too tired to post on here last night. My mom and step dad did a wonderful job of cleaning my house from top to bottom. I knew mom would clean, but didn't know she'd get the ladder and dust the ceiling fans (I have an extendable duster for that.), iron my sheets and things I couldn't imagine.

I was a good night of sleep in our own bed. I now feel like I could pull off a small Thanksgiving meal-ham and potatoes. Yesterday I didn't want to step foot into the kitchen. My how some sleep can change the attitude.

Thanks to visitors last night that finished putting the shower seat together for us and brought the kids a pizza. My mother in law made Sean a dinner the kids wouldn't eat and I had no thoughts on dinner either. Sometimes it's the little things as well as an awake mind to help.

Thanks to all and have a Happy Thanksgiving!

Monday, November 23, 2009

Monday, Nov. 23rd

Aside from the days blending together, things are going well. I forget what was on what day and time drags except when it comes to sleeping. I close my eyes and the door opens or he needs something. It never fails.

He is on a liquid diet and just heard they changed him to solids with low sodium. I think they are working on kicking him out tomorrow after dialysis. The chart says he goes home tomorrow, I hope they do dialysis prior to leaving here tomorrow. With Thanksgiving Thursday, he will need to come back out for it on Wed. then do his Saturday. I think that will be the true test of how he feels-having to wait several days for dialysis. He is on the Tues., Thurs., Sat. noon schedule.

He is tired, but feeling fairly well. He is still on the pain pump, but using it less. They did add a pain pill today I guess to get him ready for discharge. The ride home will prove to be challenging I'm sure. I'll be the longest that he's had to sit that straight up. I know it'll get better each day. We will have to go see a doctor to remove staples and stitches for port. I was kind of hoping they'd remove the stitches while at the dialysis center or prior to leaving the hospital. I think they have to be in for 10 days though.

We have some more visitors coming out this evening. It is nice that people are driving this far after a full day of work. They are very sweet and stopped by my house to pick some things up for me. I sent too much stuff home with the kids. Guess I thought I'd wear the same shirt for a few days :-)

I told mom that she would need to leave Fri. - Sun. sometime. I want some normal and it is difficult with people there. It is nice they were able to come and handle some things.

His parents went back to Clarksville today and will return tomorrow to pick him up. Their car sits higher and will likely be more comfortable. I might rent a truck to bring him to dialysis. I'd like to just get a new one, but don't want the payment-ugg. I hate that he's not riding home with me, but guess I can speed ahead and make sure things are good. All entrances to my house have steps so.....that will be a challenge tomorrow or whenever for that matter. I might be able to fix that relatively quickly. I learned from my little brother how to do a ramp-I think.

The kids went to school today. Dayle has several things due tomorrow and I told her to ask for an extention. I don't know that she will, but anything done over the weekend probably isn't her best. She will have to decide herself if she'll ask. I know they will understand as I emailed them all the information several weeks ago.

Garett's teacher is helping too. I've given her heads up about his mood when possible and she's giving a dose of love with some tough love if necessary. I want them both to know that this is no excuse to slack on their job! I hope they understand that.

Well I'm off for now. Honestly, I hope we sleep all of Thanksgiving. I think I need it to catch up

Sunday, November 22, 2009


Nov. 21st

Sean got a short/introductory dialysis today. He looked fabulous a few hours after it and we up and walking. He wanted to get himself out of bed and walk so he did. I am surprised at how much he is able to do after such a big surgery. I am also very proud of how well he is handling everything and getting up even though it causes him pain. I know in the end it will be best for him, but am not quite sure I could be that mobile. The kids are good motivators though.

Our nurse, Mary, was wonderful on Friday night. She was back tonight, so I went to get the kids and spent a little time with them. (I think I actually slept more of it, but the goal was to see them.) Garett said he finished the movie we were watching and moved to the pull out bed because Dayle and I were too hot for him. He is so warm natured, he is hot in the winter when the heat is on. So very much like his daddy.

Nov. 22nd

Today they pulled off the dressing from surgery so now the staples are visible. He had a rough night frankly just laying in that bed getting stiff is the biggest issue. Of course there is pain, but they are managing it fairly well. Sitting watching a clock is tiring. Funny how that works.

The doctors are now allowing ice chips and little water. However, that causes gas in the form of burps right now. Which in turn causes pain on the belly where he was cut. The nasuea has probably been the worst and he doesn't understand how with no food or water for several days, it could happen. Due to this, he hasn't walked as much today. I think before noon, he walked 3 times. However, he hasn't made it out since then. I'm sure we will go again tonight.

The doctor said today that he won't come home tomorrow. His intestines aren't waking up yet and so he can't go home until they do. It is subject to a daily check, but right now, he is thinking Tues. or Wed. They are working on dialysis schedule for his time here. He will get a longer does of it tomorrow.

He had visitors from work which was quite a nice change of pace. They couldn't stay too long b/c he began falling asleep. He had no trouble showing off those staples. They are teasing about him coming to work and having someone wheel him around. I'm sure given a few days, Sean would love nothing more than a routine day.

Friday, November 20, 2009


Wow! It was a very scarey day and I did well until my baby girl lost it. She's been so very mature and helpful with all of this and today it was rough saying goodbye before going into surgery.

The surgeon came in and seemed like he could go either way on the cut. Sean told him his option and the doctor determined he could indeed do it that way. This incision is supposed to be easier to heal/recover which is good with only 5.5 weeks until transplant.

The surgery itself was not at all long. They began surgery at 8:52 and were closing at 10:47am. However, he was in "recovery" until after 2pm. Then finally in holding until around 4pm-maybe a little later. They moved him to a room and told us someone would come get us when they were ready. We were waiting and had issues since renal floor is on the "tramau" floor too. They don't allow children in this area to include the waiting rooms. So they left us in a hallway instead. I finally checked with the nurse and she said we could come back. All blew kisses b/c he was sleeping.

Sean had lots of visitors "waiting" with us. Ms. Tammy and Ms. Cindy came with magazines, movies, a DVD player snacks and goodness only knows what else is in that bag-lol. Of course, his parents, my parents and the kids. I think the kids being there is a good distaction.

Much of this seems to be more than Garett can comprehend. I'm sure he won't remember it-I hope not anyway-but Garett heard my mother in law say she passed it to Sean. So Garett said to me, that means dad might have passed it to me. He also doesn't seem to understand that he couldn't just come home with us today. He has been told we'd be here past this weekend. We have arrangements for my mom and step dad to take the kids back to Clarksville to do the last two days of school prior to Thanksgiving.

I am at the hotel now b/c the nurse on duty, Mary, is very efficient. They used his brand new port to monitor something today-without permission-and left tubes attached. This nurse found it and called for orders to remove and flush the tube. Sadly, it was on too tight, but she flushed and packed it (with antibiotic I believe). She is contacting dialysis tomorrow to have it removed.

Well I'm off to bed or it was pointless for me to return here.

PS. My brother in law got a kidney donor!!! Whoo-hoo.

Thursday, November 19, 2009

Starting to Feel the Stress

The stress is getting real. I see it in the kids and it breaks my heart! One won't discuss it or break because she won't add that to our load. The other can't comprehend the whole thing. He's told many times what will happen and how it will work, but asks again. Dayle did that when she was little and the information was too much. He is doing that now. I do know that it's normal, but you want the best for your kids and this seems too much.

All in all working until the day we "need" to be in Nashville was a good idea. I wasn't feeling that on Tuesday, but I think it ended up being the best bet.

We came home from work to find my house cleaned up, a new shower head installed (my brother gave me a part number to make my life easier), jello in the fridge and a shower seat purchased and ready to go. What a great surprise. I asked for the jello, but only discussed what needed to be done in the next week prior to or shortly after Sean's return home and walla! Thanks to my in laws and kids!!!!

Kind friends all around. Words cannot express how amazed we are at the outpouring of love from friends, oworkers and of course, family. All have sent little gifts and/or offered services, home and cell numbers for contact. We continue to be overwhelmed by the kindness. Sometimes things are mentioned and it ironically shows up like a zebra stripped snuggie-lol.

We are off to Nashville to have the dialysis port put in today. We are just staying out there instead traveling back. The kids and rest of the family is expected out between 2-4. Surgery is tomorrow at 8am and I'll try to post updates as I'm able.

Thursday, November 5, 2009

Details, Details

Oh my goodness....the details! The kids, the dog, the parents, sub plans, hospital crap...what to do with them all???

We are still nailing it down. I have made arrangements to stay in Nashville for 5 nights thus far. Mom is coming in to help with the kids. Kids are missing a day of school for the surgery. The dog will be handled by the neighbor until Mom comes back with the kids with Saturday night or Sunday.

I have an email into our donor coordinator to determine if dialysis needs preapproval with insurance. Don't know if PKD foundation is interested in the kidneys, but if they are they need to contact me with how to do it.

I'm working on sub plans. Hubby made arrangements with a tech guy to come set my sub up with a computer so she can use my model classroom to teach-whoo-hoo. I have the two day week before Thanksgiving done and almost all sticky tabbed. :-) Now to nail down the plans for the week on Nov. 16th.

The knot in my neck says it's getting close!

What else am I forgetting???