Saturday, June 30, 2012

We're still here!

It's been a while since my last post. Things have been pretty busy. Tom is hanging in there. The blood tests from this week showed his white blood cell count to be 23 - too high. We weren't sure about the antibiotic the doctor at rehab wanted to give him so he called Dr. Rutland for his input. He has started taking it once a day. I have no idea when they will check his blood again. His ammonia level was 75. I think that Tom has been struggling to feel well so maybe this matches up with his blood tests. Of course, we have no source of infection, they also did a chest X-ray but all is fine there. I am concerned, we'll just leave it at that. I had to work pretty late on Thursday night so it worked out well that my sister Judy, brother-in-law Clark, and niece Kenzie, came to visit. They spent some time with Tom on Thursday night and did a bunch of stuff at the house. Clark doesn't sleep much so he can get a lot done in a day! It was great to see them and have some help. Tomorrow some folks come to move furniture so the floors can be re-done. Don't know now all of that is going to work out. Tom wants to keep seeing the dogs so although we were originally planning to send them to our niece in Georgia, they are going to stay with me upstairs. My neighbor has graciously agreed to continue taking them out each day. Pray that the workers don't get tired of hearing them bark -I'm sure they will do a lot of barking! It's almost too hot for the pups (or anyone) to be outside at all! It was a record-breaking 109 here yesterday. It is miserable. We now have a huge metal dumpster in our driveway. Fortunately it is behind the gate but it makes getting into the garage a little tricky. My mind is full of things that might "accidentally" end up in it! I've notified our neighbors about what is going on. I know they will keep a watchful eye on things for us because we have the BEST neighbors! I hope you all are able to stay cool. Thank you for praying for Tom, please continue to pray - especially for whatever is causing his WBC to be elevated. We need for it and the ammonia level to go down.

Monday, June 25, 2012

Challenges

Please pray for Tom, he is really struggling with a few things - mostly the fact that he has been in the hospital more or less for two months. He has had very little freedoms, he can't get around or even out of bed without assistance. He is really improving physically but it is a slow process. Anything that is wrong is magnified by his frustration. I am still not impressed with the nursing care at rehab. This is a big source of frustration for Tom and a huge one for me. Tom is handling it much better than I am. I don't know what it will take to get these folks to get with the program. Tom has met with them again, he's trying to keep it together but sometimes you just need to go off on someone and that's hard for the rest of us. I know he wants to help and be involved with what is going on at home and that is hard too. I hoped the puppies would cheer him up yesterday and I think they did a little, but it's so sad when we have to leave. My sister and her family might be coming this weekend, so we're excited about that. They will help get some stuff done at home and also visit with Tom. I have to work Thursdy night so hopefully they can keep him company then. It's also difficult for Tom to have to spend so much time alone. With all that is going on this week, I won't be there as much so that makes it worse. We'll get through it, it's just a tough time. Tom's email is burnet99@bellsouth.net. If you get a moment, please send him a note of encouragement. Maybe that will help. I'll remind him to check his email! As always, thanks for your prayers.

Saturday, June 23, 2012

Time outdoors

Both yesterday and today, Tom was able to go outdoors and enjoy our hot weather! As part of his physical therapy, he got in and out of a wheelchair so he took it outside "for a spin". He's doing really well with physical therapy. He's lost quite a bit of fluid weight so that helps a bunch. Tom's wound is doing better. I really hope he will be done with the wound vac soon. His discharge summary didn't have anything about making an appointment with Dr. Rosen so Tom will call next week to make one. I'm hoping by the end of next week, Tom will be able to leave here for a few hours, just to get a away. There is not much more to report for now. We appreciate you continuing to keep us in your prayers.

Wednesday, June 20, 2012

Back in the SNF

Tom has returned to the skilled nursing facility. He is in the same room and all his stuff was still here. He is anxious for some more intense rehab. I still have no idea what his ammonia level was today but I guess it's good enough to have discharged him. He still doesn't seem all the way back but well see how the Ned few days go. Please keep praying the ammonia gets to a normal level and he can get back on track wih physical therapy.

Tuesday, June 19, 2012

Ammonia level down a little

Tom's ammonia level is down to 110. Still not near normal but better. Dr. Miller came in while I was here this morning and talked about changing up a couple of his meds. I'll try to get an update on what Tom is taking from the nurse on the night shift. Conversationally, Tom is just fine. He tends to doze off in mini naps and may be a little slower on his responses. He did get up and walk some with physical therapy today. He really looks forward to doing that - as you can imagine. Dr. Miller said a few times that Tom needs to get moving. We told him it would help if he could have more physical therapy, either here or at rehab. No one will make a commitment on when Tom can go back. His room is still available but when I called to give the rehab an update today, they told me they would be packing up Tom's stuff in the morning. I'm not sure I believe that, but whatever. If his room is not available, maybe there will be another one there or Tom will go someplace else. My friend, Rebecca, was released from the hospital today and she got moved to the Cool Springs rehab where Tom would like to be. I feel like he is better today so maybe the med changes helped get things going in the right direction. Please keep praying for Tom. Thanks!

Monday, June 18, 2012

Ammonia level up and down

For some reason, Tom's ammonia level is back up to 137 today. He is doing ok but is sleepier and a little more lethargic to me. I thought he was that way last night and figured his hematocrit was low. His potassium was a little high again today too. I was not here when Dr. Rutland came by this morning. He told Tom to plan to stay a few more days. He is still getting IV antibiotics. I don't know if the blood culture testing is complete. Dr. Miller, (gastro doc) came in and looked Tom over this afternoon and said everything was good. Tom also had some physical therapy today - he got up and walked a little bit so he was happy about that. The wound vac was changed and is doing its thing. Tom told me this morning he hoped to go back to rehab so he could get up more. I'm glad he is anxious to do that. Tom's sister, Cathy, and her husband, Dave, were here this weekend. Cathy kept Tom company at the hospital and I worked Dave's fingers to the bone peeling wallpaper in the kitchen. At times there were 3 layers to remove! So, it's as good as its going to get for now, I am so relieved it is done. I started removing the wallpaper in the powder room yesterday after spending the morning on my hands and knees scraping bits of glue and wallpaper off the kitchen floor. I'm pretty sure I will never have wallpaper in any room again! When we finished Saturday night, we picked up food from PF Changs and joined Cathy and Tom for dinner. It was yummy! Yesterday was our 17th wedding anniversary! We decided to downplay it for now. It's not been an easy year but I am so blessed to be married to a fighter - he is my hero! His nurse special-ordered a slice of angel food cake for him. That was sweet. The third and final Bradford Pear tree was removed from the backyard on Saturday. For a while, I thought the fence would be coming down with it but they did a great job keeping that from happening. They made 3 trips with a fully loaded trailer and still have one trip to go - it was a big tree! It's very bright in the backyard now. I'll miss the shade but not raking leaves! Please pray that Tom's ammonia level will get down to where it needs to be and if there is a reason it keeps going up, they will figure it out and can get it under control. Thanks

Friday, June 15, 2012

Better Today!

Tom's ammonia level is down in the 90's today.  Still high, but much better.  He received an IV antibiotic yesterday and they are still testing the blood cultures.  I don't know when those results will be available.  His urine culture was clear so that's good.  All of the other numbers are still OK also.  He sounded pretty good when I talked to him this morning, he was hoping to take a nap after breakfast.

They changed his diet back to a low sodium, hepatic diet yesterday.  Since he ordered a huge breakfast (before the diet was changed), by dinner every meat item put him "over the protein limit".  It took a while to work out something for him to eat.  I think he was still "over the limit" but , he was hungry, so I don't think it really mattered.   

Cathy and Dave are coming to visit today.  I don't know who is more excited, me or Tom. 

I think Tom will get a little PT today - probably just exercises in the bed.  He will have is wound vac changed as well.  I'm guessing he will stay through the weekend.  I keep thinking the SNF is going to call and tell me they've given away Tom's room!  I don't have it in my "schedule" to go and move his things but I will do it if I need to.  Then we can wait for another bed all over again.

My friend Rebecca is still waiting on a SNF bed too - they are in very short supply!

Thursday, June 14, 2012

Ammonia Level is UP!

Tom's ammonia level is higher today than it was yesterday.  Dr. Rutland is not sure the reason.  He is increasing the amount of medicine Tom takes for high ammonia level and will also start him on a mild antibiotic.  There is really no indication that Tom has any infection but, then again, this is something that has been an issue before.

Tom called me at 4:30 this morning and said he was not feeling well so I went to see him before work.  He was doing OK but clearly having more trouble than yesterday.  I feel like he will be better as the day goes on. 

Dr. Rosen actually changed Tom's wound vac yesterday and was very pleased with how the wound looked.  He replaced a few of the stitches as well.  The dressing looks much better.

When Dr. Rutland was in this morning, I mentioned Tom's diet.  When he was in the hospital before, they had him on a low sodium, low protein diet.  It made ordering his meals a challenge but I wonder if that helped with the ammonia level (particularly the low protein part).  He has been on a regular diet for the most part since leaving the hospital on June 1.  The rehab center was supposed to be giving him lower sodium - it wasn't as low as it needed to be and there was no true monitor of it or lower protein.  Tom made a huge effort to choose things that he knew would be lower sodium so that was a big help for the fluid retention but the protein affects his ammonia level.  I told Dr. Rutland that I thought Tom had been off of the ammonia med the last week or so he was in the hospital.  Dr. Rutland told me that was not true.  He did say the dose was lower.  Anyway, as I said yesterday, I need to get diligent again about what and how much medication Tom is taking.

I am not unhappy that Tom will remain in the hospital.  His sister and brother-in-law are coming tomorrow and I am so looking forward to seeing them.  I know Tom is as well.  Of course Tom is not getting the physical therapy he needs most so that is unfortunate but once the ammonia level is back under control, more intense physical therapy can take place.

Please continue to pray.  I am slightly discouraged but I know it will get better - especially with help from family!

There is joyful news to report - I have a new grand-nephew!  His name has not been decided so I am calling him Baby Boy Chapman.  That makes my younger sister a second-time grandmother.  For that, she should be older than me!!  I pray that soon Tom will be better so that we can go and meet him in person!

Wednesday, June 13, 2012

Tom in hospital again

Everything is fine!!!

The rehab folks thought Tom was "unresponsive" yesterday so they decided to send him to the Emergency Room.  Although Tom's ammonia level was 160 on Monday night, when they checked it yesterday in the ER, it was already down to 80.  Tom was alert when I got there yesterday evening and remembers everything about the ride over - including the bumps! 

Anyway, I felt a lot better just knowing he was in good hands both yesterday in the ER and overnight last night.  He said his night was not restful but he was behind on his meds so they had to catch him up - that kinda makes for a miserable night.  The wound care folks are going to come and look at his leg today and change the wound vac (which hasn't been connected since he left rehab).  I really hope Dr. Rosen will be able to look at it while Tom is there and consider closing it up. 

Tom's potassium is a little low but everything else is good.  Once I heard that, my suspicions that the rehab folks "panicked" was confirmed.

Becky, my dear friend from work went over to the rehab yesterday afternoon to get Tom's iPad, phone, computer and wallet because I couldn't get them to guarantee me that Tom's things would be safe.  This morning I went by to get his glasses and a couple of other things.  They cannot guarantee the room will remain available when Tom is ready to be released (although I thought I read in their paperwork that they would hold the room for 30 days).  I hesitate to "hope" that he could go somewhere else because it may be worse.  Anyway, I hope they will give me some notice if they need the room so I can get the rest of Tom's belongings - including the refrigerator!

More later.

Monday, June 11, 2012

About the same

I was really hoping Tom would be better today but he's about the same as last night. They ran regular blood tests today that the nurse said looked ok, and they just came and ran a stat ammonia level. I think it's pretty obvious his ammonia level is high, I don't know what they will do differently once they confirm that. They have added one dose of medicine for a total of three per day. Tom ate a good dinner so maybe that will help too. His biggest challenge is dexterity - using the remote or the bed controls. His conversation is good. He said he had some physical that today, I don't think he got out of bed. They have brought in a wheelchair so maybe they will get him to a point soon that he can get in it and move around some more. He's still very tired. He needs some sleep so that's ok. I don't think they check on him as much when they see him sleeping though. Apparently some of the nurses here have not experienced high ammonia level. Tom told me they talked about sending him to the hospital this afternoon. I was not happy to hear that but those folks were gone when I got here this afternoon. You might want to pray for me, I really want to scream at these people! They didn't change his wound vac today because they changed it yesterday. He said they were going to change it tomorrow. Please, please pray that his ammonia level comes down. It will be so much easier for him and those taking care of him.

Sunday, June 10, 2012

Not himself

Tom was not himself most of the day today. For whatever reason, his ammonia level must have spiked, coupled with the fact that he had backed off a little on the ammonia medicine because he felt like he was getting dehydrated. I was actually more worried about him getting dehydrated because that would possibly put him back in the hospital with IV fluids. After all the fluid he's lost so far, I sure didn't want to start THAT over. He's lost about 12 lbs since he got here! They also had problems with his wound vac last night. Tom knew his ammonia level was going up - he called me about 6:45 this morning and asked me to come up. I threw on some clothes and headed over. He was somewhat confused but very sleepy. I helped them change the wound vac dressing, it didn't faze him much - he slept through most of it. I couldn't get him to wake up to eat breakfast so I went on to church. I came back a couple of hours later. He was still very sleepy but I managed to keep him awake long enough to get him to eat some lunch. He fell asleep again so I went home for a few hours. When I got back this afternoon, he was more alert but still struggling some. It will just take a little more time. He's more frustrated with himself right now. He has a good nurse until 11 pm so that helps. They are few and far between here. Tom did not have any PT this weekend but that will start again tomorrow. He does better when there is stuff going on. Yesterday he seemed kind of depressed - of course he's been bed-ridden for over six straight weeks - who wouldn't be depressed? His sister is coming up later this week. I know that will do wonders for him (and me)! I found out last night that they did do blood work on Thursday. Everything looked pretty good. His WBC is at 13 but his red count is low. We'll see what they do about that tomorrow. Please pray that the ammonia level will drop fast. He's worried about struggling tonight.

Friday, June 8, 2012

Continuing to rehab

If you've been looking for an update, sorry, there just hasn't been much to report.  Tom is doing well and getting stronger every day.  He is disappointed in the amount of walking he can do - he tires so easily.  I keep telling him it will get better.  The physical therapy folks seem to be really good and he likes the food.  That's pretty much all the good I can say about this place.  I really don't want to be the squeaky wheel, but I think I'm going to have to speak up about the nursing care.

I showed up this morning with supplies - things Tom needs for his care that they are not providing!  If that's what I need to do, that's fine, but it doesn't seem right.  I will also talk to the case manager to see what she can do to help.  I am most worried that something is going to happen to land him back in the hospital!

Tom met the facility doctor this week, he wasn't impressed. 

The wound care nurse seems to be doing a good job with the wound vac.  Tom has an appointment with Dr. Rosen on the 18th.  Green Hills will take care of getting him to this appointment and back.  If Tom is able to get around better by then, I may be able to take him myself.  I am pleased they are handling that though.

Tom was hoping to get to come home for a few hours this weekend but he can't move well enough to get in and out of the car or truck so he'll keep working and we can try again next week.  I'm planning to take the pups for a visit again on Sunday.

Tom's kept pretty busy during the day and I go by every evening.  This week, Dennis went by on Wednesday evening and I went biking!  Our weather has been wonderful for biking. 

We lost another tree in last week's storm - it hardly fazed me.  I just made a couple of calls and now the tree is gone.  Last year when we lost the first tree, I was in panic mode.  That's God changing me!!  We are now planning to have the third tree removed since it will not be able to stand alone without the support of the others.  Huge Bradford Pears just don't do well.  So, this fall, maybe we'll plant some new trees.  I'm excited that I won't have a gazillion, bazillion leaves to rake!

My wonderful neighbors are continuing to support me and offer help.  What would I do without them?!?

Tuesday, June 5, 2012

Another busy day

Tom has had another busy day. He said folks were in and out all day. We had a care plan meeting around lunch time. They basically wanted to know the kinds of things Tom needed to be able to do once he got home like stairs or cooking or whatever. We told them that Tom needed to be able to take care of himself. They asked if there was anyone who would be staying with him. I'd really like to ask them what they would do if this was one of their family members. We must be the only people who have to work and don't have family members who have nothing else to do but take care of someone! Anyway, it sounds like he had a good bit of physical therapy today, not hard stuff, just lots of reps. The swelling has gone down a little in his legs, I am relieved about that. Tom is supposed to get a new bed tonight, one with a thicker mattress. Hopefully with it he won't feel the bar in his back. He said it feels like he is sleeping on a hide-a-bed. There was a little trouble with his wound vac today. It is making a lot of noise. Everyone that has checked it says it's working fine. It has not previously made that noise. It would drive me crazy to hear that all night. I hope he can tune it out. I've been so wrapped up in "us", I have failed to mention some very exciting family news: my sister-in-law, Debbie, has been inducted into the National Honor Society. She is currently finishing up her studies to be a Radiology Tech. We are so proud of her! She has worked incredibly hard and is very deserving of this award. In addition, our great-nephew, Ben, celebrated his first birthday this past weekend! Ben and his family took great care of Finley and Fritzi when Tom first went to UAB. They will also keep them in July while we have some work done on the house. Our family is such a treasure! We ask that you continue to keep Tom in your prayers. He is doing better each day.

Monday, June 4, 2012

PUPPY VISIT

The puppy visit went really well yesterday.  Tom loved having Finley & Fritzi love on him.  I had taken them to get their "nails done" on the way and now Tom has a gash on his chest!  We stayed for a couple of hours but that was about it - I was home by 7:30!  I liked that - even if it's just for one night! 

Tom seems pretty content.  His attitude is still upbeat.  I think he is looking forward to physical therapy today.  He is NOT looking forward to having is wound vac changed.  He is very concerned about the nurse who will be doing it.  He has asked me to call Dr. Rosen's office and have them "consult" with the nurse before she changes it.  I will call them this morning.

He is moving around much better and it looked like the swelling had gone down in his legs a little.  That has been my biggest prayer.  He has a couple of really good nurses and techs and a couple of not-so-good ones.  His nurse yesterday came in to change the cartridge on the wound vac by grabbing the whole case and started walking across the room with it.  Fortunately Tom was able to grab the tube and keep her from yanking it out of his leg . . . something we will need to discuss with the folks in charge!

Hart, the husband/father of the family that was in the bad car accident was in Sunday School yesterday.  What a blessing.  They are all healing well, slowly.  Rebecca is still in the hospital but hopes to move to rehab later this week (I wanted to say "good luck" finding a bed). 

I'm happy to be at work early this morning!

Saturday, June 2, 2012

24 hours of rehab

Tom has settled in really well. His room is very small so there is not a lot of space to move around. He can have a little refrigerator so I bought one today but we've had quite a time trying to get it where he has access to it, and everything else he needs, from his bed. He's been evaluated by everyone, including physical therapy. The nursing evaluations took a while last night. I had hoped to get out of here by 6:30, I ended up leaving at 8:30. I wanted to get home and let the dogs run around outside and wear out so that I could get to sleep early. Didn't happen! This morning I rode with 2000 of my friends in the Harpeth River Ride. Three of my close friends and I rode the 44 mile option. It was much more challenging than I thought it would be but the weather was perfect and we all finished in a respectable time. Maybe I can leave early tonight. Ha! They seem to be spoiling Tom when it comes to meal time. He is getting two helpings at just about every meal! There is a family assessment meeting on Tuesday so I need to make sure they have the right diet for him. Dennis came by for a visit today. He helped unpack and move the fridge in so that was nice. The care seems to be good here. I was a little worried last night, the first night is always scary. I was so tired and they didn't seem to have their act together, I was very frustrated. Tom got here so late in the day too. But, it all worked out. I'm planning to bring the puppies to visit tomorrow. It will be good for Tom. I can bring them into his room, that should be fun! I'll let you know how it goes!

Friday, June 1, 2012

MOVING TO REHAB TODAY!!!

A bed has been reserved for Tom in Nashville!  It's right across the street from our best shopping mall too!  Tom will need to receive his LAST dose of IV antibiotics before he goes so it will be late this afternoon before he's actually moved. 

I've talked to the facility already and will go over at lunch and sign paperwork.  They are ready to have him and assured me they would take good care of him.

I can tell Tom is anxious about the move.  He also just had is wound vac replaced.  Please pray for his peace. 

I'll send more info this evening.