Sunday, January 29, 2012

A good weekend

Things have been good this weekend. Tom and I got out a couple of times and he even went to the grocery store himself while I was at church this morning. Hopefully his potassium and ammonia levels aback to normal. We'll find out tomorrow.

Tom doesn't have a whole lot of strength or stamina. I think getting out has helped both but he will really need to work on that. He's trying to "budget" his physical therapy visits so he hasn't had the therapist come out in quite a while. Tom does better when the therapist is here working with him.

We're praying for a calm week. We hope you all have one also.

Thursday, January 26, 2012

A double whammy

After a great deal of effort I convinced Tom to go to the doctor to get his blood tested today. Even though his doctor is off on Thursday afternoons, the office did call to tell us that Tom's ammonia level is "elevated" (it's 101 which is high to me) AND his potassium level is low. A prescription is being called in for the potassium and I will go and pick it up shortly. Tom is supposed to take a double dose tonight and another double dose in the morning! He has to go back on Monday to be tested again. I just gave him a dose of the ammonia medicine. I know he gets a full dose in the morning, but he told me he's been taking some at lunch so I don't give him a full dose in the evening. Last night he didn't want any. I'm going to have to watch that I guess.

More than anything, I am worried that he is not pumping his shunt. He says he is but with the confusion, I'm not sure if he remembers what he is doing. If it clogs, it is history. This is something specific Im asking you to pray for. He looks a bit more swollen to me too so, that's another reason he needs to be pumping more than he is.

This just really needs to get better fast.

Wednesday, January 25, 2012

Feeling Better

Tom says he's feeling better.  I was not convinced earlier in the week but he seemed to be up moving around more yesterday (he unloaded the dishwasher and put everything away - which was huge for me)!

He said he's "pumping" so I'll take him at his word.  I asked him if he felt like it was working, he said he thought so.

I wish it was an easier process to get his blood levels checked.  His potassium was low when we left UAB and I'm just wondering what it and the other levels are like.  We could go to his doctors office to get them checked but it's such an ordeal to get there and I know Tom probably doesn't want to go.  I'll keep an eye on him and see how the next day or two goes.

I think we're both anxious for him to get better and stay better without the fluid setbacks.  It was pretty mild here yesterday and I offered to take him somewhere or just go for a drive, but he declined.  Maybe we can do that this weekend.  I don't want to wear him out but I want him to be forced to move a little more.  It's too easy for him to put off doing anything at home.  He and the pups seem to enjoy curling up together under the warm blanket and snoozing :-)

We are thankful for your continued prayers.

Sunday, January 22, 2012

Doing ok

Tom is still not feeling great. I was hoping he would rebound today but he's been complaining about soreness in his abdomen. Now that he is back on lasix, he's been getting up a lot so maybe that's why. Who knows?

It's been a pretty quiet day, other than the exciting football games. It was great to be in town to go to church this morning, some friends of ours were in town from Atlanta and it was great to see them in Sunday School.

Bad storms are expected in Nashville tonight so I've brought in a bunch of firewood and we have a fire going just in case we lose power. It's fairly mild here so that helps a lot. I've also gathered together some water and snacks for us and the pups and put them in the powder room, which is our "safe room" here. I doubt Tom will join me there but that's where the dogs and I will be if the tornado sirens go off.

We hope if yoo're in the path of the storms, you stay safe.

Saturday, January 21, 2012

We are going home!

Despite a rough night, we are going home. Tom didn't feel well most of the night. I personally think it was all of the food he ate yesterday. His potassium was low this morning so they gave him a couple of huge pills. They didn't stay down very long, maybe 45 minutes. I don't know if that is long enough for them to do their thing. Dr. White has been in and given the ok to go home. He said Dr. Eckhoff would be here about 11 if we wanted to wait around to see him. Tom said he would like to get on the road, I don't mind waiting. It is pouring down rain right now and there is a tornado watch until noon so I'm ok with waiting a little bit longer. It takes Tom quite a while to move around and get ready, I'm not too worried.

They always say the second day after surgery is the worst. I have personally experienced that to be the case and I think it's going to make the trip home a long one. Hopefully Tom will be able to sleep most of it.

Dr. White said we would need to come back in a few weeks for a check-up. I hope we have that appointment time set before we leave. I've found it quite a challenge to get in touch with the Liver Center on the phone and it seems like we always end up with conflicting information on the scheduled day. I'd like to be able to have some say in our appointment time too.

Unless something changes, you probably won't get another post today. Once we get home there is so much to do in getting settled, unloaded and unpacked. Plus, the puppies will be very excited to see us. I'll try to post an update sometime tomorrow.

Friday, January 20, 2012

Good News

We may get to go home tomorrow! Dr. And team just came in to see Tom and said everything was looking good. Tom actually told me after they left that he would like to stay one more day just to be sure. I agree with him on that. This pump takes some getting used to and I want to make sure Tom knows what he is doing. He's feeling pretty good this morning because his stubbornness is back! We slept well last night despite the interruptions. It was much better for me once Tom turned the lights out about 2 am. He still tends to doze off quite a bit but he's been doing that all along.

Tom's sister, Cathy, and her husband, Dave, are coming to visit this afternoon. Tom is pretty excited about it. When he was in recovery yesterday he asked if his sisters were still here, I told him they would probably come this weekend if they could so I'm glad I wasn't lying to him. He wants to go to the cafeteria and have lunch together when they get here. I told him it was 3 blocks away and that we might need a wheelchair. He probably walked at least that much on Wednesday but that was before surgery.

Tom forgot his cell phone charger so I may head out in search of one in a little while. It seems I get stir crazy much faster these days so it will be nice to get out of here for a little while. He could use a new one anyway. Maybe I'll find a mall on the way!

Thanks again for your prayers. God is listening and answering!

Thursday, January 19, 2012

Room P860

Tom is settled in his room. In fact he was here about 40 minutes before I even knew. I finally went up and asked the status and they told me he was already up here. He is alert and waiting on some broth, jello and Popsicles. He's pretty hungry and thirsty. I have not seen a nurse but it's getting to be shift change time. I've made one trip to the car and have at least one more to bring my stuff.

Tom is complaining about being sore, but he has been for a couple of weeks. Now he just has a couple of more reasons. He has no cath so I guess he will be getting up tonight. That's not a bad thing, I don't want him to lose any of his strength.

Going to go get something to eat and get my stuff out of the car. I'll post again tomorrow.

Out of surgery

Tom is out of surgery. Dr. Echhoff was called away so Dr. Gray did the surgery. He was the doc that knocked our socks off during the transplant evaluation period. He remembered us.

I also spoke with the recovery room nurse. She said Tom was alert and had some pain at the incision site so they've given him something for that. He will be going to a regular room tonight so that is good news.

I don't know how long it will be before I can see him. It may not be until they move him to his room. I'll send another post once we get settled there.

Back at 12:15

They took Tom back at 12:15. According to the color coded chart, he is in "prep-holding". I hope he is actually in surgery by now. I left and took all his stuff to the car. He won't be assigned a room until he is in recoverey. Then I can haul it all back in.

I may or may not get an update while he is in surgery. They announce your name over the loudspeaker. That won't help my heart rate when they call our name.

Thanks for your prayers. I've been really calm and didn't even cry when I said good-bye to Tom. I know he is in God's hands.

Still waiting

We are still in the holding area. We've been in here since about 8:30. The nurses tried three times to give Tom an IV with no luck. The attending is supposed to come in and try or I guess they might wait until they take him for surgery. The gown he has on hooks up to a hair-dryer kind of thing to keep him warm. I wish I had one too, it's cold in here! Tom has had a nice nap so that has helped pass the time for him. The staff has been very nice and helpful. I have a tracking number for Tom that will provide me his status and whereabouts once they take him to surgery. They have monitors out in the waiting room that will display the color coded information. Pretty neat.

We had a pretty uneventful night. Tom was able to get in and out of bed when he needed to without my help. I don't know that either of us slept well but we did get some sleep. I was going to leave our stuff in the room and go back and check out later but ended up getting it all loaded up this morning after all. We walked into the admissions office about 5:33 this morning (if I had my way, we would have been there at 5). The place was packed! We waited about an hour before Tom got called to register.

I may or may not get an update while Tom is in surgery. I still don't know how long it will take. I'll post info as I get it.

Wednesday, January 18, 2012

In Birmingham

Its been a busy day - mostly of waiting somewhere in the Kirklin Clinic. This place is huge. We started on floor 2 for lab work. Then went to 3 for a chest X-ray and most recently to 5 where we arrived 40 minutes before our appointment time and were 16th to check in. The appointment time was 12:30 and we saw the surgeon at 3 pm. We are now on the first floor for the pre-op assessment and to meet with the anesthesiologist. Things look good so far. The surgeon confirmed that Tom would be in the hospital for about 4 days (Thursday counting as day 1) so I'm still hoping to go home on Sunday.

Tom is the second surgery tomorrow so it will be about 11 or so before he goes in. It just depends on the person before him. We still have to be here at 5:30 so it's gonna be a long day of waiting. After the surgery we will go to the 8th floor where we were before. It will be good to see some familiar faces. I hope they don't have to put him in ICU first.

We drove down this morning and Arrived at 10 am. We decided a night at home would be more comfortable than a hotel. There must be something big going on here this week. We couldn't get a room at the Marriott Courtyard connected to the hospital but are just a block away. I plan to stay with Tom at the hosptial.

Hopefully we'll be out of here shortly and can get settled in our hotel. Tom has been a trooper today. He's not feeling too bad.

I'll send updates as I get them from the docs tomorrow. Please pray for Tom and his doctors.

Sunday, January 15, 2012

Lots of news

First, Tom's doctors appointment on Friday went really well. Tom has lost 44 lbs of fluid since Dec. 15. He gets around so much better. Dr. Rutland did not run any blood tests because . . . this week, Tom is going to have the Denver shunt put in. Yes, he really is! UAB called last Thursday and gave Tom the option of having the procedure on Jan. 19 or February 2. Of course my company was wonderful in letting me be off on such short notice and Tom wanted to go ahead and get it done. He has to be in Birmingham on Wednesday for blood work, a chest X-ray, a meeting with the anesthesiologist and a meeting with the surgeon, who just happens to be the head of the liver transplant center. His procedure will be on Thursday, he has to be at the hospital at 5:30 am. We're not sure how long Tom will be in the hospital so we're planning to spend the weekend there but I hope we'll get to come home on Friday.

Yesterday we (pups included) decided to take a road trip to Atlanta to see Tom's dad and family. After the home health nurse came by at 7:00 am to remove Tom's PIC line, we headed to Conyers, GA. After spending a little time there, we drove across Atlanta to Carrollton to see Tom's sisters. At some point, Tom started feeling bad. When we got to Cathy's house, Tom went straight to lie down. Cathy was so accommodating of him. Meanwhile, the rest of us had a wonderful spaghetti dinner, salad and triple chocolate brownies! I also got to meet and hold our newest great nephew, Ben. What a cutie. He didn't cry or anything the whole time I held him, he just smiled and laughed! After dinner, our great niece Becca and I played and had a really good time. She is the sweetest well-mannered, well-behaved little lady. Kudos to her parents, Meagan and Jeremy. Meagan spent most of Friday night knitting sweaters for Finley and Fritzi. They are so cute and I love the yarn. Finley wore hers all the way home.

We didn't get home until midnight so it was a very long day. I think it was a little too much for Tom so I think we're going to head to Birmingham on Tuesday night. The dogs will stay with the house sitter.

Tom is not feeling well again tonight. He looks a little flushed so I hope it is nothing serious. One of us will call the doctor in the morning. He seemed fine most of the day, he has been sleeping a lot though.

Please pray that Tom will begin feeling better and the shunt procedure will go smoothly. I'll be posting updates.

Wednesday, January 11, 2012

FINISHED WITH IV ANTIBIOTICS

This morning I gave Tom the last doses of IV antibiotics!  Hopefully this will be it for a long, long while and his PIC line can be removed.  That's one less source of infection - we'll see what Dr. Rutland says about it on Friday.

Tom is doing well.  He ventured out to the grocery store yesterday, I can't say I was really excited about that but I know he is stir-crazy and it must feel good to do something on your own!  He's still using the walker to get around but I remain hopeful that it can be replaced with a cane soon.  The swelling in Tom's legs is going down but we're still treating a couple of wounds - mainly the one he got in the hospital. 

No word yet from UAB on the shunt.  I hope to call them this afternoon and see if there is a status.  Part of me wants another week or two without the possibility of a hospital stay but the sooner things get going, the closer we are to a final resolution.

My sister made it to town on Monday night and we celebrated just like it was Christmas Day:  opening gifts and watching football! 

I'll post an update after he sees the doc on Friday.

Monday, January 9, 2012

A SMOOTH WEEKEND

Our weekend was busy but went well.  Tom is super-happy to be home and is getting around pretty well.  It didn't take long for our first mishap.  Before Tom was even out of the car, the puppies jumped on him and scratched his arm.  We took care of that pretty easily but once Tom was in the house, I picked up the dogs and took them to get their nails trimmed (one of those things I don't have time to do when Tom is in the hospital).  Anyway, I guess it was also time for another round of shots because it cost me $133 to get out of there! 

Tom has two antibiotics he receives via IV.  They are given at 6 am and 6 pm.  The first one is supposed to take about 75 minutes and the second one 30 minutes.  We've discovered that the more room-temperature they are, the faster they run so I set the alarm for 2 am today to get up and take them out of the fridge.  I think I'll go with 1 am tomorrow since it took the first one about 90 minutes to run.  This weekend it didn't matter so much since I didn't have any place to be that early. 

The Home Health RN came by at 6:45 am on Saturday to do the paperwork again.  This is the same poor guy who comes every time Tom gets out of the hospital.  He spends 5 minutes taking Tom's vitals and 45 minutes filling out paperwork.  I told him to fill out everything but the dates and I would make copies for the next time.

Our second mishap occured yesterday when Tom wanted to go to the grocery store to get some stuff to make chili for dinner.  When he got out of the car, he hit his leg on the car door.  Not a big deal but since it is on his calf, it has been leaking lots of fluid.  I told him since all of the fluid is in his tissue instead of his veins, that is what happens.  He told me to hand him a nail and hammer and he would get rid of the rest of the fluid.  We're still dressing the wounds from the hospital so there is a lot of cleaning and patching to do while the IV's are running. 

Tom is taking lots of diuretics so he's up a lot.  I really hope he will rest while I am at work today.  I know he is lonely and bored so for those of you who are close, feel free to go by and visit (please forgive me for the shape of the carpet - it WILL be replaced someday!!).

My "Santa" sister is coming to town tonight and will be delivering Christmas gifts from Memphis!  I thought about holding on to our presents and "re-gifting" them next year but, to be fair, we'll send her back home with them. 

Tom has a follow-up appointment with his doctor on Friday.  The antibiotics are scheduled to be done on Wednesday so hopefully he won't need another round.  I'm really hoping to hear from UAB on the Denver Shunt decision this week now that the holidays are over. 

Friday, January 6, 2012

GOING HOME TODAY

Tom just called and said they are going to let him go home today!  I Trust You Jesus . . . Praise the Lord!

Yesterday Dr. Rutland had told us that he wanted Tom to stay on this new antibiotic for 10 days.  They started it on New Years Day.  If it was not approved for Tom to receive this medication at home, he would have to stay in the hospital 5 more days.  Tom did not understand this part of the conversation yesterday so when I was re-stating it for Dr. Dunn this morning, Tom got VERY upset.

I came on into work and called our Blue Cross Social Worker - who is so wonderful - she said that the medication is very expensive, but they can most times find a way to get it at home.  I had placed a call to our Rx company and was on-hold with them when Tom called to say they had the approvals.

Tom is in the process of moving from mad to glad. 

Dr. Rutland probably won't be by until lunch time to do his piece of the discharge paperwork.  Then the hospital staff has to do theirs so I'm sure it will be this evening sometime before we get home. 

I'll probably not post again until later this weekend.  It's usually very busy when Tom gets home.

Wednesday, January 4, 2012

HOME ON THE HORIZON

Dr. Rutland actually said that Tom may get to go home in a couple of days.  The key is that he remains stable (and nothing else goes wrong - my words, not Dr. Rutland's).  His hematocrit is higher today, thanks to the blood he received last night.  Everything else looks good and his ammonia level is 47.  I'm hoping tomorrow might be the day but we'll have to wait and see.  Tom is making plans for the weekend - mostly about stuff he wants to eat.  These steriods really do a number on his appetite!

Thanks to all who have called, emailed and texted the past few days.  I'm sorry for not responding to you all.  Now that everyone is back at work, it's really busy.  There is just not enough time to go through the story for everyone and get my work done.  I'm working on some fun stuff and when I get started, I don't want to stop.

Our moods and attitudes have improved.  Of course it helps when Tom is better and we both get some sleep.  He slept most of the morning today.  I'm going to try to get him out of the room tonight - just for a short walk.  I think he needs to build his stamina.  He thinks he pulled a muscle in his chest when he fell this past time so that's been giving him some pain.  My sympathy reserves are running pretty low so he's not getting much from me.  He asked the nurses to turn off the bed alarm last night - which they did.  Even though Tom says he calls them when he's going to get up, he will not wait more than a nano-second for them to show up.  I do understand this - but I am still worried.  I told him if he fell again, I was not going to come and see him anymore.  That didn't go over so well.

When I left yesterday morning, the hospital staff was complaining that their phone system was not working.  I told them if they "fixed" my husband, the two of us could probably "fix" their phone system.  Hopefully the team of folks working on the phone system is faster than the team working on the wireless Internet.  It's kind of scary that we rely on it so much now.  I could really get something done if it was working.

One of my devotions this morning talked about repeating the phrase "I Trust You Jesus".  I have been saying that all day.  I think it's going to be my motto for 2012.  One of the gifts I receive from my mom each year is a new copy of Daily Guideposts.  Since Tom and I haven't exchanged Christmas gifts with my family yet, I'm re-reading my 2011 Daily Guideposts - it's just as good the second time around!  I hope you all will join me in Trusting Jesus this year - we're living examples of how He carries us through the really, really difficult "life interruptions".  I was also looking through my prayer list for 2011, there are so many friends who have had it much harder - with losing family members or terminal illnesses.  We do have much to be thankful for.

Tuesday, January 3, 2012

Ammonia level down to 43

Hard to believe! Tom is so much better today. Dr. Rutland didn't offer much of an explanation about the spiked ammonia level. I asked him if he would review the test results for the past week and see if there was a set that could be sent to UAB for them to evaluate. All of the tests have to be run in the same day and they don't run every test every day. The day Tom's ammonia level was so high they didn't run the liver enzymes so although that should have made a big pact on the list position, it can't be used.

Tom's kidneys are still doing great. Managing the fluid is going to continue to be a problem though and Tom will have to keep dealing with these hospital visits unless UAB decides to do the Denver Shunt procedure or something else happens. Not really what we wanted to hear but I'm hoping we can find a way to balance the meds and manage it somehow.

Out neighbors have come through for us again and will go over in the afternoons and let the pups out for some playtime. That will save me a trip home from work and back to the hospital which gives me an extra hour of time at work and/or with Tom. I've been making 2 - 3 trips per day which is really tiring.

Tom's hematocrit was low today so they are giving him 2 units of blood tonight. It takes quite a while to run so hopefully there are some good movies on TV for him to watch. There are still problems with the Internet access here. I'm typing this post on my iPhone.

That's about it for tonight. My thumbs are tired!

Monday, January 2, 2012

Better again

Tom is more himself this afternoon. Still not as good as he should be but it's a lot less stressful for both of us. I was hoping we could take a nap today but every time I got settled, either Tom needed something or someone came in. I'm still trying to get out of here to go home tonight.

The nurse he has tonight is one we've had this trip so she knows what's going on and that will make it much better.

They keep increasing his ammonia medicine and he will get an extra dose early in the morning. He's already starting to refuse but I suggested they spread them out a little to make it easier for him. He hasn't been up at all today - I'm a little disappointd in that, but I know he's sore from all of the up and down last night.

Fortunately there have been no more tears today - I'm thankful for that!

I was looking up e normal ammonia level on the Internet and noticed that diuretics raise the ammonia level. They added. Third diuretic to the mix N I wonder how much that contributed to yesterday's train wreck. WebMD specifically mentioned one of the drugs Tom is on. Hopefully they can back down on those a little in a day or two. I think they've scheduled another full work up in the morning so we'll see what that shows.

I've finally made it home. On a mission to get to bed in an hour. Thank you Ll so much for your faithful prays. We are desperate for them right now.

Jeanne

Tears

There were lots of tears last night. When I got back to the hospital (with the intention of leaving early for some much needed sleep), the nurse stopped me in the hall and told me Tom had slipped again! He didn't completely fall to the floor but she said it took four of them to get him back in bed. I asked why the bed alarm wasn't on, she said it was but the time they responded to it, Tom had already slipped. Now, Tom has basically been in the hospital bed for 12 days. He has gotten up with me a couple of times and it takes a good 15 minutes for him to get himself out of the bed - with my help!! I ask you, how long did it take for them to respond? Once I made it Tom's room, I sat on the bed and just cried!

The nurse said he didn't want to take his meds and kept telling them to "wait until Suzie gets here". I don't know who Suzie is but if that is who Tom is calling for when he is delirious, she needs to come on over and take care of him. I was at the hospital all night, Suzie never showed up.

I asked the nurse this morning for a print out of Toms blood test results. Here are his ammonia readings for the past few days:

Dec. 31: 54.8
Jan. 1: 185.7
Jan. 2: 75.7

How does that happen!? Tom is better today but obviously his ammonia level is still high. The report shows his billirubin is high also and the calcium, protein, and albumin are low but not "remarkably" low. His WBC is 10.6 so that's pretty close to normal. Tom got up every time he needed to use the bathroom last night. I think he got about 4 hours of sleep, I got 2. Hopefully the ammonia level will continue to come down today. A huge thanks to Thelma, the dog sitter, who responded to my panicked call at 7 pm last night and agreed to stay with the pups.

It was good to see Dr. Dunn back this morning. We are anxious to talk to Dr. Rutland tomorrow. I may also see who I might need to chat with regarding the bed alarm fiasco. I have asked the team today to set it on the middle sensivity setting so when he starts to sit up it will go off. I don't know why it hasn't always been like that.

Tom did not eat anything after breakfast yesterday. About 3:30 this morning he was hungry and proceeded to eat everything on yesterday's lunch tray, followed by everything on the dinner tray (yuck) and then was ready to order breakfast.

I've been home to take a quick shower and play with the pups. I'm headed back and will try to post again tonight if the wi-fi is working.

Sunday, January 1, 2012

Happy New Year

We're trying hard to make this New Year's Day a good one but it's been tough. Tom's ammonia level is twice what it was two days ago so he is even more confused. I wish I could understand what is going on, even more, I wish the doctors could explain it but they can't.

Tom has a bladder infection so they are supposed to be giving him a new antibiotic for it. I was there for 5 hours and no one brought anything. I called for help twice and never got it. The second time I was struggling with Tom because he was trying to get up and I didn't think it was a good idea. Some how I was able to get him up on my own to use the bathroom (crying the whole time). From there we went for a short walk! When we got back, he got back in the bed and promptly fell asleep. I cleaned everything up, grabbed my stuff and left. I stopped his nurse on the way out and gave her his status. I asked a couple of questions about his meds (she didn't know the answers) and told her if she was lucky he would stay asleep and that I would be back later.

The PCP on-call is still covering for Dr. Rutland through tomorrow so we probably won't get back on track until Tuesday. Dr. Dunn is supposed to be back tomorrow. I'm going to take the blood test list required for UAB tonight to see if I can get them to run the required tests tomorrow. Tom's creatinine is up some more so maybe that will help him move up the list - but I don't think it will be enough because the levels are not that bad. Tom still has a lot of fluid but it was easier to tell that he's lost quite a bit when he stood up today.

All I know right now is something's gotta give.