Friday, November 30, 2012

Endoscopy is fine

Well, nothing out of the ordinary in Tom's esophagus or stomach so we're thankful for that. Tom did not go back for the procedure until 2 pm. It was supposed to take 5 minutes and he was going to spend 30 minutes waking up before heading back to his room. At 3:15 I called for an update. He had just made it back to his room, the unit administrator (who knows us well) said he was sitting up and seemed to be doing fine.

Tom is more alert - praise God - and he is not moaning as much. Dr. Miller said they are still waiting on results from the urine and c-diff tests, he thinks Tom might have a bladder infection. They are continuing to give him antibiotics.

Tom has finally received some "food" although it is clear liquids. He has had two helpings of beef broth and 2 small glasses of apple juice. If he tolerates that, he will be advanced to a full liquid diet and the back to real food. So far, so good. He has even asked for a soda, which he hasn't wanted in about two weeks. He likes to drink soda.

Dennis is going to hang out with Tom while I go to my friend Rob's funeral tomorrow. Tom is pretty excited about it - I am so grateful for Dennis' willingness to give up his Saturday, not to mention all of the other time he spends with Tom.

Thank you for your prayers. Hopefully whatever is plaguing Tom is working its way out of his system. It's been a tough three weeks. Hopefully by early next week Tom can be on his way to rehab to get stronger.

ENDOSCOPY TODAY

Tom will have an endoscopy this afternoon.  We were told it was going to be this morning so we're very upset that Tom has to wait all day with no food or drink.  His ammonia level is 56 today but his WBC is 18.  Dr. Rutland started giving him IV antibiotics yesterday - I think that helped his ammonia level.  Tom still "hurts everywhere" but I think he is thinking a little more clearly this morning.  He's just so sore that he can't think about anything else.  I can't get him to give me anything specific about his pain:  type, where, etc. 

I didn't see Dr. Rutland or Dr. Miller yesterday so I don't know what they are thinking.  I know they ran a couple of more tests (urine & C-Diff) yesterday but do not know the results.  Tom ate about half of a small lunch and dinner yesterday - I tried giving him as much as I could because I knew he would be hungry this morning.  He drank a lot of tea last night.  It seems like he is holding more and more fluid.  That really bothers me. 

Tom said he worked with the physical therapists yesterday but couldn't remember what they had him do.  I checked with his nurse but she wasn't sure if he had PT or not.

The ammonia medication was really "doing its thing" yesterday so that made Tom miserable too.  He told me the nurse & tech were very irritated with him.  When the nurse came in last night, I commented that Tom mentioned she was irritated with him and he wanted to apologize.  I think it surprised her and she said she wasn't irritated.  I believe Tom!

I don't want them to find anything wrong today but I want them to be able to fix whatever is making Tom feel bad so I'm struggling on how to pray.  I just want Tom to feel better!

I'll update after the procedure.

Wednesday, November 28, 2012

More of the same

Tom still "doesn't feel well".  He says his stomach hurts - I don't know whether it is from the reflux or it's upset or both.  He says both.  He ate some breakfast and lunch but is still very lethargic.  His ammonia level is just over 100 today.  Dr. Rutland is not too concerned about that - Tom is making sense and opened his eyes, listened and asked Dr. Rutland questions this morning.

Dr. Rutland will talk to Dr. Miller and they may decide to do the Endoscopy tomorrow.  Tom wanted to know if he would have to go without food :-).  Dr. Rutland said only until after the procedure.  Physical Therapy came in while I was there at lunch so I stayed to "help".  Tom kept telling me to "go to work" because he didn't want to do anything and I basically forced him to participate.  He sat up in bed and did some leg lifts and arm lifts.  He moaned and complained the entire time but I was very glad he did it and told him so.

I wish I knew what was going on with him.  I don't think it is just the ammonia - I know he is exhausted from the reflux because he has an episode every time he eats or drinks anything - he ended up with the hiccups about 4 times last night!  The swelling in his feet has gone down but he still has a lot of fluid.  All of his blood tests are stable and his WBC is down to 14.  I will feel better if the Endoscopy is done.  Hopefully they won't find anything, but if they do, at least we can address it and then maybe Tom will feel better. 

Tom called at 11:30 last night and again at 1:30 looking for me.  I felt so bad.  I was encouraged that he was able to dial the phone (one call was from the room phone and one call was from his cell phone).  I know it seems like something so little but when he's lethargic, dialing a phone can be complicated.  I translate that to lower ammonia levels even though that is not always the case.

Dr. Rutland told me today that he shares his notes with UAB but that doesn't include the hospital information so tonight I will assemble the dates Tom has been hospitalized and send it to them tomorrow.  I have most of it along with what he was primarily admitted for.  Dr. Rutland wants to be sure they know how many times he has been hospitalized - I normally call them each time but it might not hurt to have a summary.  It's actually very scary to see how much time Tom has spent in the hospital.  I doubt it will really matter as far as the list position but maybe it can be used for even more exception points.  At this point, I will try just about anything!!!

Tuesday, November 27, 2012

You decide

Ok, every time I post that Tom as improved, he gets worse so I'm going to provide an update and you can decide whether it is better or not.

I hit the jackpot for doctors visits today. During the morning visit, Dr. Miller came by. He and Tom discussed the reflux issues and were trying to decide whether to change Tom's medications or do an Endoscopy. Tom was really hungry and wanted to eat (which meant he couldn't have the Endoscopy today) so Dr. Miller decided to increase the medication. Tom ate a decent breakfast.

At lunch, Dr. Rutland came by. He said Tom's WBC is down to 16. The tests are all normal (for Tom), no fever. There is one other test he was waiting on but if the WBC continues to go down they will proceed with moving Tom to rehab. Tom ate a decent lunch.

Tom still "doesn't feel good". He asked the physical therapy folks to come back later but I'm not sure if they did. I'm disappointed that he sent them away but when you don't feel good, you don't feel good.

In the "why you should give your neighbor a key to your home" department, I received the following message from our next door neighbor: "Gail has prepared a dinner and dessert for you today. I put it in your refrigerator." Am I blessed or what????!!!!

Now I just need to figure out how to get home earlier tonight!! Gail is an awesome cook!

Monday, November 26, 2012

Waiting . . .

On the blood test results from this afternoon. Tom is not feeling well this evening, his stomach has been upset. He couldn't work with the physical therapists and tried to send the wound care folks away but the nurse told him either the wound care folks would change his leg dressing or she would, so he gave in. I told her this evening to put her foot down and Tom would probably go along.

He doesn't seem to have a fever but he's been sleeping a lot. I'm sure he'll wake up and be feeling much better when it's time for me to leave!

He's getting lasix but probably needs some more. He's been holding onto more fluid. I always worry about that.

Ok, new WBC is 18. That's better and everything else is the same. Still don't know what is going on. I guess we will wait it out and see.

I'm attaching (i think) a photo of a beautiful poinsettia that was sitting on our counter when I got home last night - a gift from our super- neighbors!! This may be the only Christmas decoration our house gets unless Tom comes home soon. That's ok though. Honestly, I'd rather take the time to deep clean the house.

I'll post if anything changes.

Ammonia down again

The good news is Tom's ammonia level is down to 64 today and he is "himself" again. The not-so-great news is that his white blood cell count is up to 20 with no explanation thus far. I missed Dr. Rutland's visit today but he called and said he was going to run some more tests and re-test Tom's blood this afternoon to see if there are any changes. He won't be going anywhere today but the social worker is looking for an opening in a skilled nursing facility for rehab.

I'm not sure how Tom has taken this latest news. We did know about the WBC from my visit this morning. Dr. Rutland is giving Tom another med to help with some reflux issues. Tom is not as sore today and did not complain about his care overnight. He did not even seem too upset when I told him I wouldn't be there first thing this morning. I know that is because of the prayers of his prayer-warriors.

I'll provide an update later this evening.

On another note, I ask that you pray for the girlfriend and family of my friend, Rob Brooks who suffered a broken neck in a mountain biking accident on Thursday. Rob passed away yesterday after developing breathing complications and choosing not to be placed on a ventilator. His girlfriend, Heather, is also a friend and co-worker of mine. They came to visit us in the ICU waiting room when Tom first got sick. God has ordered our steps and numbered our days. Each one is precious.

Sunday, November 25, 2012

EKG is OK

Tom's EKG is normal. Dr. Richards was actually here when they did the test. He was so kind. He did not run labs this morning to save Tom from being stuck. I'm pretty certain his ammonia level is up though. I just hate it. It's so hard to help Tom. He ate just a few bites of his lunch, I doubt it will be much better with dinner but I'm going to try. He is still complaining about his chest hurting. They put a pain patch on his chest. He continues to sleep most of the time and gets really upset if I even mention going home or to work tomorrow. Leaving is never easy but will be especially hard tonight. I've been here so much the past four days.

Praying for a better tomorrow.

Not a better day

Tom is feeling pretty bad today. His chest is hurting (right side), he told me it feels more like muscle pain but the pain is constant. He can't tell me if he remembers doing anything specific. The nurse called the doctor and they are going to run an EKG. It was hurting last night, in fact they put the pain patch for his back on his ribs instead. His blood pressure has been running a little high. I don't think they are related. He is more lethargic today, I suspect his ammonia level is up again but I'm waiting on the nurse to get the lab results.

He is not calling out to the nurses station for help. I called them directly after I talked to him this morning and then he called me an hour or so later and told me he needed help again. When I asked him if he called the nurses station, he said yes. I called the nurses station again and asked them to check on him. The nurses confirmed for me that he has not called out all morning. It was not a pretty sight when I got here after church. He said he called for help - in all fairness, I called for help but pretty much had everything done before they showed up. He can call me so I know he can connect the dots. It is frustrating . . . for both of us!

He did not eat any breakfast. He told me he would order it for himself. I'm sure he fell asleep. I do wish the nurses would have followed up on that. Anyway, he has some lunch but his appetite is not too good. He has not had physical therapy yet, I'm not really sure if he will have it today. I hope so.

Tom said a surgeon came in to look at the wounds on his legs. I'm trying to confirm this. Whoever it was said the leg wounds were pretty bad but they were doing the right things for them?!?!

Tom can fall asleep faster than anyone I know and sleep deeply. He has had some crazy dreams too. It takes him quite a while to wake up so I think that is part of the problem. I don't think we can do anything to fix that, it's just a matter of getting everyone to understand.

My sweet neighbors are letting the pups out this afternoon so I only have to make one trip to the hospital today. I originally told Tom I was going to come straight from church but I decided to head back home instead. I needed to get some laundry done! I stopped by Walmart on the way to buy a few things - it was my only "shopping" trip of the long weekend! I spent $49.99. I purchased a half gallon of milk for myself and some tea for Tom. The rest was spent on oatmeal, turkey and treats - all for the dogs!!! They are the only ones eating at home! They are not spoiled.

Saturday, November 24, 2012

Unhappiness

Tom's nurse came in and broke the news that Tom is not going home today either. She said Dr. Richards is going to get them to look for a skilled nursing facility (rehab) for Tom on Monday just so he can get a bit stronger. I don't think this is a bad thing as long as he can get close to home.

Tom's ammonia level is up again today. They are adjusting and stopping some of his meds to try and help with the ammonia level, his reflux challenges and his fragile skin. I am thankful for a on-call doc who is willing to make some changes to help Tom.

His friend Dave came by today, it really lifted Tom's spirits. I can't tell you how much he enjoys seeing Dennis and Dave. It is a relief for me when they come by too.

I want to ask for additional prayer tonight. Of course, always for Tom and his healing but also for a friend of mine, Rob Brooks. He suffered a broken neck in a mountain biking accident on Thursday. He has no feeling in his legs and the docs don't think that will change. Initially he was feeling pain in his arms and could move them. Last night he started having trouble breathing and he has refused to be placed on a ventilator because he doesn't want to live "this way". Folks, life is not always fair and we don't understand it's twists and turns. Please love God with your heart, mind and soul and love your family, friends and neighbors.

Friday, November 23, 2012

Still here

We're struggling with home vs. something else. Tom does not want to stay in the hospital. I had hoped they could get him into a rehab center today but I guess they have a holiday today too so right now, he will be here until at least Monday. That has not been sitting well with Tom. Although he stood up three times during physical therapy, he was still very weak and needed help from both of the therapists. I don't think it is help I can provide by myself. I had sort of hoped this would convince him he needs to be stronger and if they could have moved him to rehab today, it might have made a difference. He is feeling better from a back pain standpoint. His ammonia level is back up in the 80's today!?! I just don't know what to do or what to tell him. I am so sick of this place too but I just don't think we can manage at home alone. It really upsets Tom when I tell him this. The physical therapists tore another spot on his leg today. That makes a total of four since he got here last Thursday. That scares him too and wants me here all the time so I can take care of him. It does amaze me how I can take care of him here by myself and not tear his skin but no one else can. I'm probably much slower though and they are in a hurry. He keeps telling them when it hurts, I don't understand why they don't stop and listen to the patient!!!

I desperately want him to get some rehab. If we had help at home, I'd be more inclined to push to get him discharged, but we don't. Please pray he will be patient (no pun intended). I don't want him to push himself and then get hurt again.

He had a good tech tonight, I'm not too sure about the nurse. She's new to us, that could mean trouble. Tom doesn't really like the folks who don't know him or understand his stubbornness!

Thursday, November 22, 2012

Happy Thanksgiving

Well, Tom is still sore but doing better. Ammonia level is in the 40's - Yahoo!!!!!!!!

Dr. May came in and was ready to discharge Tom but we decided to hold off since he hasn't been on his feet for a week. Dr. May will have physical therapy come in today and help him get moving some and maybe he can go home tomorrow! That really perked him up so hopefully he will push through the pain to move! He's still a bit groggy with the pain meds but we're going to keep feeding them to him.

Tom called and talked to his uncle and cousins today - he was so excited to hear their voices. He talked to his dad before I got here this morning too so it's been a great day for him!

He got quite a bit of sleep last night and the nurses covered for me so that I could go home and get some sleep too. I'm happy to report that the kitchen remodel is officially done so I'm putting it all back together again. It needs a good deep cleaning so I hope I can get that done sometime this weekend. We had some other rooms painted so they need to be reassembled as well. There is plenty to do at home so I really, really hope Tom can move well enough to get home tomorrow.

I verified that Thanksgiving is the only holiday Tom has not spent in the hospital since he first got sick. Lets hope and pray it is the last holiday (unless of course he's getting a transplant)!

We pray that you all will have a safe and blessed Thanksgiving!

Wednesday, November 21, 2012

Sleeping beauty

Tom is still in pain but so far has been sleeping most of the evening. I am worried what will happen when he needs to go to the bathroom! Dr. Rutland has ordered a different pain med that Tom can have every six hours. Hopefully it will keep him "knocked out" for tonight. His stomach is a little upset so he has not eaten anything since last night. He is still lying flat although it is ok for him to sit up if he wants.

I've been online looking at the recovery time for this procedure. Everything says it is outpatient or an overnight stay with some pain for about two weeks. Nothing indicates what Tom seems to be experiencing. Tm told me they only fixed two and the radiologist told him he would need to come back next week to get the other two done as an outpatient procedure!! What?!?!? I kinda don't see that happening at the moment. It will be hard to tell by then if this is really going to fix Tom's pain. I was impressed that Tom remembered that to tell me!

I'm wondering if we can set up a FaceTime session overnight so when he wakes up, he can hear my voice and see me (if he opens his eyes).

Thanks to our many prayer warriors. I've heard from two good friends today who have really encouraged me. Of course, my co-workers listen to me vent over and over and still make me laugh and give me strength. Then there is our family, for them I am most thankful. We always get a call, email, text or card from one or more of them at just the right moment.

Back in his room

Tom is back in his room and is in extreme pain.  I could hear him yelling down the hall!  He said they didn't tell him it was going to hurt this had . . . And he's right!  They said the pain would be gone!  He said "everything hurts"!

He's been given the mild pain meds he can take all the time.  I've asked the nurse to check with Dr. Rutland to see if they can give him something stronger for today.  They did make two incisions in his back so that is sounds more like the Kyphoplasty procedure instead of the Vertebroplasty.  Tom said being on his stomach wasn't as bad as he thought it was going to be.  He has to lay flat for 4 hours.  He's pretty drowsy which is good but when he wakes up, he screams in pain.  His nurse said he was originally screaming for me and one of the first things Tom said to me when I got here was he didn't want me to leave.  It's gonna be a long, long night!

I've got to go back to the office for a couple of hours and then I'll be here this evening.  Please pray for both of us!!!

Surgery update

I know they are done with the procedure but Tom has not returned to his room yet.  When I called for an update, his nurse told me they had just finished up and that "it took a while".  He was not sure why.  Nothing with us is ever easy!

Tom's ammonia level was back up to 110 this morning.  Dr. Rutland came by before they took Tom down.  I asked him why he thinks the ammonia level won't go down.  His response was "because his liver is shot".  We know it is not good but I think if it were that bad, he would be higher on the list because his kidneys would be affected.  I am trying not to worry that this is going to be the "norm".  Tom was communicating clearly but seemed more lethargic this morning.  He said he ate a little of his dinner when we finally got it at 8:45 last night.  He also said he just wasn't feeling good this morning.  If this procedure solves the back pain and he can get some food in him, maybe he will feel better.

I don't know if Rutland is on-call this weekend or not.  I had hoped Tom might be well enough to be discharged tomorrow but if his ammonia level is high and he cannot get up and down, that probably won't happen.  I can still hope they might send him to rehab though.

Tuesday, November 20, 2012

Kyphoplasty Update

Gotta love these new words!

Since Tom had already eaten breakfast this morning, he could not have the surgery today so he is going to have it tomorrow.  I don't know what time - hopefully in the morning.  He seems to be OK with it so that's good.  I hope his ammonia level is even lower tomorrow - sometimes the anesthesia can mess with that. 

That was all the info Tom had at lunch.  I'll try to catch his nurse this afternoon for any more details.

Addendum:  Tom's surgery will be around 9 am tomorrow.  They are going to do something called Vertebroplasty instead.  They can sedate him for it instead of putting him to sleep.  The anesthesiologist has come by to get the authorization forms signed.  Tom will have to be on his stomach for the procedure.  That will probably be uncomfortable for him.  Prayers requested.

Ammonia down to 74!!!!!

Yes!  Tom's ammonia level is down and he is more "himself" today!  I told him it was good to have him back. 

Dr. Rutland came by this morning and gave us the good news.  He also told us that the spine specialist had already seen Tom (don't really know when that happened) but they are moving forward with scheduling the Kyphoplasty procedure on Tom's back.  This will require Tom to be put to sleep so that's always scary.  I don't know how quickly this will happen - today, tomorrow, next week, next month . . . The radiology team at Baptist does this so it may be easier to schedule than if it was being done by an orthopedic surgeon.  I think today would be good.  Then, if Tom's ammonia level is better, he could go home tomorrow or Thursday :-)

I'll post an update as soon as we know something about the surgery.

Monday, November 19, 2012

A visit from the orthopedic doc

The orthopedic doc just came by and talked to us about Tom's back.  The story is the same, compression fractures in about 4 different places.  The fractures are not new.  He basically provided a couple of options, a brace or surgery.  We kind of came to the conclusion that with Tom's situation and limited mobility, the brace would be ok but probably not the best.  Of course, surgery isn't a given.  The docs have to determine if Tom's liver can handle the anesthesia.  The doc is going to send a spine specialist over to see Tom, probably tomorrow, to evaluate Tom and talk to him about the surgery option.  Then Tom will be able to make a decision.  I don't like either option - the surgery concerns me but sounds like it would be the best long term solution.  I don't see how a brace will fix what has been happening - it's supposed to alleviate the pain when Tom is walking.  His greater pain is when he is trying to get up from a seated position.  To be continued . . .

Tom is still not hungry so I've been unable to get him to eat.  He seemed a little more alert when I got here but is really struggling now.  He gets so frustrated with himself and others.  I can tell it's irritating the nurse and tech.  I've tried to explain that he is just confused.  They also gave him 2 pain pills so that is probably not helping.  Praying hard for improvement tomorrow!

MRI

I went to see Tom at lunch but he was not in his room. He was somewhere getting an MRI on his back. I looked where they sent me but never found him (or anyone else to ask). Anyway, I know that has been done and once the results are read, I guess an orthopedic doc will meet with him (us). I don't think his day has gone much better. He was not hungry for lunch and told the nurses his indigestion was too painful. I understand Dr. Rutland is aware of this.

It doesn't sound like they are doing anything different for the ammonia level at this point. He needs to eat more which will help the medicine work. I'll see if I can get him to do that this Evening. He is only eating grapes.

Still suffering

Just a quick note I let you know that Tom's ammonia level is back up to 133 today. His red and white blood counts are better so still no sign of what could be wrong. Dr. Rutland did not come in while I was there this morning so I'll try again at lunch. Tom is really suffering. He wants me there all the time right now. With the holiday and travels, he really won't have any other visitors. Tom has not been up - his back still hurts a great deal. Please pray they will find a solution to this ammonia problem quickly!

Sunday, November 18, 2012

Ammonia Fog

Tom remains in what I call the "ammonia fog". He communicates pretty well but is lethargic. His ammonia level is up one point today but his WBC and hematocrit are better. It seems there is something still lurking that is causing his ammonia level to stay up, it's just not obvious in his blood work. I can't remember it ever being this tough to get under control. The on-call doc has increased one of his meds so maybe that will help. He has eaten pretty good and the staff seems to be checking on him frequently.

I was the "bad wife" again last night. When I left, I told his tech that if Tom wanted to call me at 5 am to try and hold off until at least 6. When I called at 6:15 to order his breakfast, they told me he slept a good bit last night so that was a prayer answered! He was sleeping when I got here and often slips into a little nap. It felt good to get some sleep myself.

It is "backsplash weekend" at home so our kitchen is somewhat out of commission. Again the timing worked out since we are not there much. After that there is just some painting which I think will also get done this week - I'm hopeful anyway.

It is hard to be missing the memorial service today for the parents of my friend Amber. I just felt like I couldn't leave Tom. There are folks who would have stayed with him and had he been more alert, it would have been easier. I was a tad worried about the 5-hour each way drive by myself. Normally that would not be a problem but I tend to get very sleepy even driving to work. She has been through so much, I ask that you pray she will have peace.

I'm off to run a couple of errands and check on things at home.

Saturday, November 17, 2012

Wake up call

So much for sleeping in! Tom called at 5 this morning. He really wanted me to come to the hospital. I tried to postpone the visit but felt bad and went to see him it's so hard to tell him no! At least I got about 5 consecutive hours of sleep so that's better than anything I got this past week. He is doing a little bit better. His ammonia level is down to 114 but he is still struggling with the cobwebs.

He was hungry so I brought him some fruit and ordered his breakfast and lunch. He is still really struggling with his vision - specifically close up. He has his glasses but he can't seem to focus on anything right in front of him.

Dr. Forte is on call and has come by. I like him but he tends to want to get in and get out. There is not really anything different for them to do. I mentioned Tom's hematocrit, which is now 25.8 but I doubt they will do anything unless it drops below 25. So, we will just hang out here and see what Dr. Rutland says on Monday. Hopefully Tom can be seen by an orthopedic specialist about his back then too.

Praying Tom's ammonia level continues to fall - quickly!!

Friday, November 16, 2012

In the hospital

It's has been such a rough week, I hate to tell you that it ends with Tom in the hospital! He tweaked his back yesterday morning and he basically didn't move the rest of the day. I had a feeling it would be a problem. When I got home from work, the physical therapist and the caregiver were trying to get him to stand and he just couldn't do it because of the pain. They were both so kind to spend some extra time with Tom but when they left, Tom and I had to decide what to do. He had to be in intense pain to agree to go to the hospital. I called the paramedics. To add insult to injury, his ammonia level just kept playing tricks on him. It's been like a roller coaster all week. When he got to the hospital it was 132! We worked so hard to get it under control this week, I was pretty upset it was still so high. Of course, everything else is fine.

He was in the ER until about 10:30 last night before being moved to a room. I stayed until the nurse got all the info and then headed home about 11:45.

He was still lethargic this morning. I got him some breakfast and he perked up some. That has been the case all week. He's lethargic in the mornings and evenings but fine during the day. I missed Dr. Rutland's visit today but he called me tonight and told me it is "basically the same song, 15th verse". He ordered a consult from Dr. Miller and he came by this evening. I don't think any decisions were made - he is ordering some kind of antibiotic but I think Tom is already taking it.

I sent Tom's lab work from last night to UAB today and our case manager called me back right away. I was really hoping for great news. It wasn't bad news but not exactly what I had hoped. Tom's MELD score is the same - at least it didn't drop. I asked her about the exception points that Tom has that expire on January 2. I wanted to know if that is a "one and done" kind of thing or if we can petition for additional points again. She said a few weeks before they expire, Dr. Eckhoff would submit the paperwork for exception points again. I was happy to hear that. We continued to talk about Tom's challenges. I mentioned the problems with his back. She asked if he had had a "block" or anything. I told her I had been thinking about something like that and was planning to ask Dr. Rutland about it. So, when Dr. Rutland called me, I asked. He said that it might be possible and is going to order an orthopedic consult on Monday. Maybe he can get a block or cortisone shot or something to help with the pain so he can get moving more.

I talked to a friend of mine who is willing to work with Tom at home on building his strength so I'm anxious to get that started. I think it will be really good for Tom.

Another one of my wonderful neighbors came over during all of the excitement at the house last night. He was so sweet and offered help anytime we needed it. He also mentioned he loves to cook and does all the cooking and would love to cook us some meals - score!!! I think I'll call him and tell him to cook for four every night!! That's God reminding me He is with us in the midst of all of this.

Tom has had a decent dinner. He communicates pretty well, he doesn't feel pain as long as he doesn't have to move a whole lot. Last night he was put in an "overflow" ward and was moved to another room this evening. He is still lethargic to me. His hematocrit was pretty low but I guess it wasn't low enough to need blood quite yet. Something must have been lost in the translation and they didn't do bloodwork this morning - so it has been ordered for tomorrow.

He has another new wound thanks to the team last night. Something else to worry about . . .

Monday, November 12, 2012

Ups and Downs

Well, it's been quite a weekend.  Tom was doing pretty well after the abrupt discharge from the hospital.  He wasn't feeling well all day Saturday - we're not really sure why.  He started getting disoriented Saturday night.  I gave him extra medicine and I was up with him every 30 to 45 minutes through the night - I am not exaggerating!  He was better Sunday but disoriented again last night.  We did get a couple of hours of continuous sleep but he was not better this morning, in fact he was getting worse.  A caregiver was supposed to be here at 7 am, I normally would have left for work at 6:30 if the person I know is coming has been here before.  But because Tom was not doing so well, I decided to wait . . . And wait.  She never came.  I called at 7:45 to find out what was going on.  They told me our assigned caregiver was ill and would not be here - apparently someone was supposed to call but they didn't.  Now I know how a mom feels when the babysitter cancels!  Anyway, they called back and told me someone (new) would be here about 10 am.  Fortunately I have a very, very understanding boss and team!  I was worried we would scare away the new caregiver when I gave her the situation but she said she would stay.  I was so relieved to head to work.  Tom and I get really stressed out with each other when his ammonia level is high.  I also had to send the painter away today.  We are both desperate to get the painting finished but there was no way for him to work around Tom since he needed to work in the kitchen and family room.  It will have to wait.

I called about two hours later and Tom had not improved.  I received a call about an hour after that and found out that the home health nurse had stopped by for her evaluation - Tom goes through this every time he is discharged.  She did not draw blood but thought he was responding pretty well.  She also told me the physical therapist had called Tom and he was planning to come by as well.  Tom asked to talk to me and he did sound a bit better.  It made me feel a little better that the nurse had seen him.  I called the physical therapist to let him know that Tom was not quite himself today.  He suggested postponing his visit but I thought Tom might be looking forward to the visit (company) so I told him to go ahead and come - I knew I would be home by then as well.

Tom did a really good job with physical therapy, I watched what they did and asked how often the exercises should be done.  I told Tom we would do them together tomorrow.   He's eaten some soup for dinner and is sleeping now.  I am praying hard he will improve.  It's been a really tough day physically, emotionally and spiritually.  I'm thankful to be able to vent to my co-workers and family.  Rest would be good but it's more important for his ammonia level to go down and rest and ammonia  are like mixing oil and water.

Thursday, November 8, 2012

Tom is home!

We didn't see that coming!!

Tom called yesterday at 4 pm and told me he was being discharged!  After a bit of scrambling, we agreed it would be best to have an ambulance bring him home as opposed to me trying to get him up the ramp in the dark and cold by myself.  We were both a bit worried about how he would do with just me to help but things have gone pretty well so far.  He is still in pain but is just going to have to work through it.

As God's perfect timing would have it, my afternoon opened up yesterday so I decided to take a half-day of vacation and get some errands run.  Mostly it was so I could take the dogs to the vet for their shots and stuff and not have to sit and wait on the weekend.  One hour:  checkups, shots, and nail trims = $438.00!  Then we (the dogs and I) took Tom's truck to get air in the tires, fill it up with gas and then picked up the tile for the kitchen backsplash.  It was a very productive afternoon.  I wasn't home 10 minutes when Tom called.  I am so thankful to have been able to get all of that done.  The dogs are SO HAPPY to have Tom at home!

After Tom called, I called Comfort Keepers immediately to arrange for someone to stay with him since I had quite a few work commitments this week.  They were mostly able to accommodate my request so that worked out too.

As always, I ask that you continue to pray for Tom - that the pain will be tolerable and he will feel a sense of urgency to get moving and get stronger.  I'd also like to ask you to pray for a couple of our friends:  Melinda, a friend from Memphis who has been diagnosed with breast cancer and Amber, a friend from Georgia whose mother died Wednesday night after a difficult battle with cancer.  No one is immune to life's struggles, praise God that He is with us every step of the way!

Monday, November 5, 2012

A NEW ROOM

Well, Tom is still in the hospital but in a new room.  I guess this "isolation" room opened up and they wanted to move him here this morning.  It is much nicer than the other one so I'm not complaining.  He's always in "isolation" because of the staph infection he had 7 years ago.  They are continuing to give him antibiotics - still don't really know what they are treating - I'm not sure they do either.  Dr. Miller, the gastroenterologist stopped by today but nothing in his treatment was changed.  I guess they are still trying to locate a bed in a skilled nursing facility.  He was evaluated by Vanderbilt Stallworth today - that is an intense rehab place but I don't think they feel like he is ready.  He walked pretty far down the hall today.  I was hoping he would walk again tonight but I don't think that is going to happen.  I guess if I could stay until 10 or 11 tonight he might go but I just can't stay that late.

He is much better overall today.  He is more "awake" than he was this weekend.  I'm sure that has to do with a lower ammonia level.  I can't seem to get anyone to give me exact numbers - only things like "it's better". 

Tom has been on the 4th floor this visit.  He is usually on 6 or 7.  They have closed the 7th floor because they don't have the patient load to keep it open.  We have seen a lot of "our" nurses and techs working on this floor.  Today they told the 7th floor staff they had 30 days to re-apply for open positions elsewhere in the hospital or they would be let go.  I was surprised to learn that they actually apply for positions on certain floors. I would have thought they would just keep those with seniority or something.  Our nurse today, who I really like, said most of the staff was encouraged because there are a lot of other positions open, it's just hard though because they will all split up.  I guess it's sort of like my department - we are family!  Please add the nurses and techs to your prayer list.

Today was a very productive day at work and I even got two things from my home "to do" list done - namely putting gas in the car and air in the tires.  Some things just can't wait.  It's a good feeling - especially for a Monday!!  Tom's truck needs gas and air too so maybe I can knock those out tomorrow! 

I really, really hope they can get him moved closer to home soon.  He is doing well enough to go straight home except being able to stand up from a sitting position which is important.  Hopefully a few days of work on that task and he can be home.  He's just got to get out of here first!

Pray, too, for our country - especially tomorrow as we "begin" the Presidential election.  I don't think it will be over tomorrow (or anytime soon).

XOXOXO

Saturday, November 3, 2012

Still in the hospital

Tom is still in the hospital.  I'm guessing it's because they haven't found an available bed in a skilled nursing facility.  However, he is still receiving IV antibiotics and his ammonia level is back up to 125 (which is down from 134 two days ago).  It was in the 40's four days ago - do not know what has caused it to jump back up.  He does not feel good today but did get up and walk with the walker to the door and back.  It didn't hurt him as much as he thought it would.  I hope we can do it again tonight.  His appetite has not been too great the past few days.  He does not seem to be disoriented or confused but he is agitated.  They backed down on the ammonia medicine a day or two ago, I don't know if they've increased it again or not.  Don't see the nurses and techs much when I'm here.

Before they started the antibiotic today, they had to draw blood to test the vanc level.  The lab tech said they would be drawing blood again while the IV was running and then again at the end.  I am not happy that they have to stick Tom 3 times, of course, neither is he!  The nurse wonders why he is irritated!!!

Got a few things done at home today, laundry, bills and watering the yard.  They planted some grass when the removed the berms on Monday.  I'm supposed to be keeping the straw wet.  I have the sprinkler on a timer and I try to move it around every night to get full coverage.  I also got to go to kick-box class this morning, I'm feeling that tonight but I love it!

I'm looking forward to the extra hour of sleep tonight - it is the only good part of "fall back".