Wednesday, October 31, 2012

Much better today

Tom's ammonia level is down so that alone makes today so much better.  He is still in a lot of pain and they are giving him what they can but he's going to have to work through it.  He is not strong enough to move to an intensive rehab facility so he will probably go to a skilled nursing facility for a while until he can get stronger.  Hopefully that will happen in the next day or so and he will get to move some place close to home.  I told the social worker he could not go back to the place he was this summer!

He's pretty sleepy tonight.  I'm trying to get him to wake up to eat and then do some of the exercises he did with physical therapy.

My neighbors, Bob and Gail, are taking such good care of the dogs by letting them out to run around during the day.  Yesterday I got home to find homemade cupcakes.  They are so yummy!  We are so blessed!

Hope everyone has a safe Halloween!

Monday, October 29, 2012

Sometimes . . .

I just want to scream!

Tom still seemed "out of it" to me today.  He is getting the same dose of pain medicine that he gets at home but he is able to take it more often.  He has refused to take it a couple of times because his pain was not bad enough at the time - good for him!

His ammonia level is up to 145 today, no explanation.  That certainly had a lot to do with the lethargy.  When he talks, he makes sense but I do question what he is telling me.  For instance, he told me that today he walked without a walker.  I didn't believe him.  So, he got up to the side of the bed, asked me to raise it some, stood up, grabbed my had and walked forward about 5 steps and then backed up to the bed!!!!!  I am so proud of him.  A slap in my face for not believing him.  Dr. Rutland did not come by while I was here this morning.  Tom told me later that Dr. Rutland wanted to try to send him home tomorrow.  When I got here this afternoon, Tom did not look comfortable (I kinda had a feeling this tech was not going to be that good).  After he walked, he stood up again so that I could change the wet (from fluid) sheets and his gown.  I noticed that his lower leg was red and warm (cellulitis) so I called for the nurse.  She gets points for coming in to see it and then calling Dr. Rutland.  He came back over this evening to look for himself.  This gave me a chance to talk to him about extra physical that for Tom (even if I have to pay for it myself).  He gave his blessing with gusto.  He asked me if social work had talked to me, I said no.  Apparently they are trying to get Tom into a more intense rehab place - hallelujah!  I jumped on that.  I really do want Tom to come home but he needs more intense therapy for a while - whether it's inpatient or outpatient.  I'm not sure Tom was really getting the whole conversation.  I did tell Dr. Rutland about the walking and even he was surprised.  So, prayers that Tom can get some time in an intense rehab.  I'm still going to pursue extra therapy at home though.

Tomorrow I will call off the UAB visit.  Maybe we can reschedule for next month.

Still concerned about the ammonia and cellulitis but at least they are monitoring it.


Sunday, October 28, 2012

Better?

It's kind of difficult to tell if Tom is better today.  He's been sleeping most of the time I have been here.  I am thinking (hoping) it is the extra pain medicine and not his ammonia level.  He seems to know what is going on but still gets confused about some things.  Dr. Richards ordered physical therapy for him today and he sat on the side of the bed.  It didn't seem to hurt him as bad as I thought it would.  It will be interesting to see what Dr. Rutland says tomorrow.  If his ammonia level is down there might not be any "medical" reason for him to stay but if he cannot get up, he still won't be able to go home.  I really don't want him to have to go to rehab for one hour of  physical therapy a day.  I probably just need to quit worrying about something that hasn't happened yet, huh?

We were blessed with a visit from Bob Gaskill, a member of my Sunday School class.  He and his wife Emily have been so good to us, as have all the members of my class.  Tom didn't participate much in the conversation but he was listening with his eyes closed :-)

Praying that Tom will have a pain-free day tomorrow!


Saturday, October 27, 2012

Severe back pain

Well, things were humming along and even though Tom's ammonia level rose to 140 this week, that was coming down - we were so happy to be able to deal with that at home.  It was tough, but we were getting somewhere.  This morning, however, Tom was having a lot of back pain and it got to the point whe he couldn't even stand with assistance from his lift chair.  After trying for quite a while, we both agreed he needed to go to the hospital.  So, a trip to the ER and Tom will be in the hospital for a few days.  X-rays don't show anything other than some degeneration and previous compression fractures.  Dr. Richards seems to think it is more muscle pain.  Because of the condition of his liver and his elevated ammonia level, they cannot really give him any "good" pain medicine.   Since he cannot get up and down, home is not a good place for him right now.

His ammonia level is down to 99 but he is still experiencing some disorientation.  So they will work on getting that back to normal.  All of his other blood tests are normal (for Tom and his condition) so we are thankful for that.  I don't know what they can and will do for his back, I'm sure physical therapy will be involved.  I'm going to start looking for a more intense option for Tom's physical therapy.  Hopefully I can get him to buy into that as well.  He needs to be moving more and getting stronger.  The two days a week he gets now is not enough.  If anyone has any ideas, please send me an email at burnetj@bellsouth.net.

Yesterday was probably the roughest day we've had in a while.  I was stressed on several levels so started the pity party routine.  It didn't exactly help that my three devotions for yesterday all talked about being thankful for suffering.and being joyful.  I struggled with that all night.  Praise God, for the mercy he showed us today.  Tom was improving from a confusion standpoint, he calmly agreed to go to the hospital, I have help caring for Tom from the doctors and nurses, I will get some sleep ,tonight, ill get to go to church tomorrow and serve my shift as an Andrew Minister and for the greatest joy, my neighbor greeted me at the door this morning with encouraging words and a bouquet of sunflowers!  It's still a challenge to be thankful for suffering.

Tm is supposed to go to UAB on Wednesday.  I kinda doubt we are going to make that appointment.

Again, we covet your prayers.

Thursday, October 18, 2012

Tim's field trip . . .

. . . To the hospital.

Tom fell at home this morning.  I'm not too sure what happened, I think he basically lost his balance. He was near the fireplace so he ended up with a lot of scrapes.  Thankfully the Guardian unit was in place so he was able to use it.  The dispatcher sent the paramedics and then called me.  They told me he was ok and they had called for lift assistance.  When the fire department got to the house, they saw a lot of blood and felt it would be best to take Tom to the hospital.  The paramedic called me from the house and we agreed to meet at the hospital.

When Tom got there he looked a lot better than I thought.  He was complaining about his ribs so the doc looked him over, determined he wouldn't need any stitches but ordered X-rays.  Tom was worried about the dogs and the mess so he asked me to go home and "clean up".   I wasn't sure what to expect.  The paramedic told me at the hospital that the fire department had used some towels to clean up and put them in the trash.  I think I want to hire the fire department to clean my house.  There wasn't a drop of blood anywhere!  I put the towels in the wash and mopped the floor just in case.  The dogs were fine.

I called the hospital and was told the X-rays had been done but not read.  I figured that would take some time so I headed to the office to get a few things and then planned to go back to the hospital.  The doc had suggested they call an ambulance to take Tom home but I took the truck in case that didn't work out.  I didn't even get out of the neighborhood before the hospital called back and told me to stay put.  They were discharging Tom and called for an ambulance to bring him home.  (I would have never been able to get him in the house by myself.)

Tom is home and in quite a bit of pain.  He cannot take any strong pain reliever so it's going to be even more rough the next week or two.  I'm not sure how we will manage tonight.  Comfort Keepers is going to send someone for part of the day tomorrow so I'll either stay and help or head to the office for a few hours.

Praise The Lord he was not seriously hurt.


Thursday, October 11, 2012

THE LONG ROAD

Yes, it's been a while.  To say "I've been busy" would be an understatement, but then again, isn't everyone busy??

Tom is at home doing his best to get stronger.  He still has a lot of fluid from his most recent hospital visit (Wednesday, September 26 through Wednesday, October 3).  He also has a large skin tear and large gash that "appeared" while in the Emergency Room on September 26.  By the time Dr. Rosen was able to get a look at this latest wound, it was too late to stitch it up.  I have been trying to keep it clean and covered at home but it's on the same leg as the previous wound and near his knee so keeping a bandage on is very difficult - especially when tape cannot be used (it further tears the skin).  Tom has an appointment with Dr. Rutland tomorrow afternoon so we'll get some blood tests run to see how things look.

My trip to Italy was "fantastico" - thanks for your prayers.  It was good to get away and bike through Tuscany!  I stayed in touch via e-mail and became concerned when Tom stopped responding.  Even though my parents and Tom's sister Cathy, tried to keep the news that Tom was in the hospital a secret, I found out.  It was difficult, to say the least, but I knew Tom was in good hands and where he needed to be.  At the time I thought it was just his ammonia level again.  But, some infection (in his other leg) might have caused his blood pressure to drop.  He was sick enough to land in the ICU for a few days and the doctor told Cathy it was "hour by hour" that first Wednesday!!!  We've been through this so many times, I'm not sure I would have believed it - Tom is so resilient and has such a strong will to live, it seems he can survive anything.  It still breaks my heart that he has to suffer so much.

Fortunately he has been at home to watch the construction of a massive deck on the back of our house.  It's much bigger than I thought it would be but it's also very nice!  We struggled with the design - have a ramp or not and where to put it.  Tom woke up two mornings after he got home and had the best idea yet - we new have a ramp and it actually looks integrated into the deck - not so "handicapped" looking.  Today they will be removing a window in the kitchen and replacing it with a sliding glass door.  This was also Tom's vision when we started the kitchen remodel.  It's been good to have him take charge of these projects and see them in progress.  Of course, one thing leads to another so he's moving on to new landscaping for the back yard. 

Tom's MELD score is currently 17.  That includes 3 exception points that he will have until January 2.  I don't know if UAB can re-apply for exception points after that or not.  He's still pretty low on the list with this score but we keep praying . . .

Tom has an appointment at UAB on October 31.  This will just be a status appointment but at least he is getting in front of them a little more often.  I'm really hoping most of this excess fluid is gone by then and he can move around a little better.  I know they would like to see him walk into their office instead of using a wheelchair.  That's a tall order considering what he's been through and it's a big place to navigate.  I know Tom will do all he can to prove he is getting stronger.