Thursday, May 31, 2012

No news

There is still nothing to report on a SNF. The possible opportunity we had this morning fell through. The Discharge Coordinator keeps calling me asking me to expand my net. I'm not comfortable with it any bigger than it already is!! My mom even suggested a place in the Memphis area, which did not accept Blue Cross insurance but the Discharge Coordinator is asking us to consider another place in the Memphis area that is available. Tom does not really want to go to Memphis but I'm going to suggest he sleep on it tonight. Maybe something here will open up tomorrow. In Memphis, my mom could help with visitation during the week, I can't imagine it would get approved by Blue Cross but stranger things have happened. We're going to keep praying for the right place for Tom. This whole thing has made for a frustrating afternoon but we'll get through it. Tom's attitude is still good. He walked twice as far today - tomorrow he may be out the door! He's making really good progress but it wears him out quickly. All the excess fluid doesn't help. Dr. Rutland keeps telling him it will get better when he gets moving more . . . I sure hope so. We continue to ask you to pray with us for the right place for Tom. Blessings

A possible move

One of the skilled nursing facilities is working on getting insurance approval to accept Tom. He could be moving as soon as today. It is, of course, the greatest distance from both work and home but we'll deal with it somehow. It is still possible for another facility to get a bed too but I'm guessing they will jump at the first one. Tom has a lot more swelling in his legs which makes me nervous. I won't even ask about it because I know I'll get the same story. I had hoped the blood he got yesterday would help. When I was here at lunch yesterday, I got detained helping PT get Tom out of the bed. He took about 4-5 steps forward and then backwards to the bed. He was very determined to get up and did a great job. It's really hard to watch him struggle. We take it for granted just getting up and walking. It seems so easy to do but hard for me to accept that he just can't do it. Tom's WBC is 14.6 today and his hematocrit is up to 29, both good. Would love to see the WBC at 10 but it's moving in that direction. More later.

Wednesday, May 30, 2012

Good afternoon

It's another beautiful day in Nashville. Had some rain last night, which we needed. Tom continues to do as well as he can - being in the hospital. His hematocrit was 24 this morning so he is getting some blood right now. His lunch has arrived but he seems to be having trouble staying awake long enough to eat it. PT came by just as they were hanging the blood. I don't think they will "make it" back, Tom said they will :-) They are still having trouble finding a SNF bed. Apparently they don't like the diagnosis of the leg infection and that is causing some problems. I asked Tom to see if they can just go ahead and give him some extra PT while he is here. He told me he is handling it. He continues to work on his upper body strength. He is doing the exercises they gave him to do in the bed, I wish he could do more with his legs. He simply needs to get up on his feet and start moving! I feel like the only person who is concerned about it! It is very frustrating. My sister is coming to Nashville today for a conference, I'm very excited about the opportunity to see her!

Tuesday, May 29, 2012

A mini report

I haven't posted until now because there was nothing to report. Tom's wound vac was changed without much incident today. He received some pain medicine about 30 minutes ahead of time which helped. Tom was told the wound looks good. There is still no SNF bed available so I guess he will stay here a little longer. Apparently the docs forgot to resume the PT order after last Friday's surgery so he didn't get any PT today. Hopefully they will be back on track tomorrow. That is the thing that hinders him the most right now. He has been working on his upper-body strength and it is a LOT better. Every thing else is holding steady and there is no "medical" reason for him to stay here. Please pray he will get to move so he can get more PT and get back on his feet again!

Monday, May 28, 2012

Happy Memorial Day

I think Tom was in this hospital last Memorial Day! Hope everyone remembers to thank God for all those who have served and given their lives for our freedom! Tom continues to do well. They did not change his wound vac today but had to re-tape it. It will be changed tomorrow. Dr. Rosen wants to change it himself. Tom's hematocrit is up two points so we're happy about that. Hopefully Tom will get moved out of here tomorrow - to somewhere that is convenient! He's getting stronger but has not been on his feet in several days. PT should be back at work tomorrow, probably about the same time he has the wound vac changed. I'll send an update tomorrow with any news.

Sunday, May 27, 2012

A quiet Sunday

Tom has had a pretty relaxing Sunday. Dennis came by for a visit which was so nice. I feel less guilty about hanging around the house a little longer when Tom has had a guest. After Sunday School and Church, I headed back home to do a few things. I gave the dogs a bath and did some laundry. It felt good to accomplish something and was actually relaxing for me! Tom's red blood cell count has dropped a little. It is at 25, which tends to be the lower limit before they decide to give him more blood. If it drops in the morning, they will probably give him a couple of units. This is not abnormal, being that he had surgery this week and they draw blood every day. His compromised liver function does not allow him to replenish it as fast. Tom watched the Indy 500 and is waiting for the NASCAR race to start - that is what we will be doing this evening. That's ok, maybe I can take a nap! Enjoy your Sunday evening!

Saturday, May 26, 2012

Tom needs more to do!

Tom, like my dad, is now reading every printed word of the newspaper. Only he keeps giving me whole sections (to keep) with places he wants to go, recipes he wants to make and houses he wants to buy! I am collecting a large stack of newspaper at home that will probably never be looked at again! He has become quite the conversationalist, which I will NOT complain about. I've missed that for a long time. Something I still can't figure out is why he needs to have three to five different things to drink on his tray all the time. It's the same way at home! I was up early to ride bikes this morning and managed to get a bunch of errands done on the way home. It feels so good to have accomplished so much. We saw a deer, a turkey and a really big snake (yuck). I'm glad we started early, it is very hot here today! Next week I am participating in a 44 mile ride. I decided I needed a "saddle" with a little more cushion so one of my errands was to the bike store! Tom met with the on-call doc for a while this morning. Tom told him he wanted to go to the NHC Cool Springs SNF so the doc said he'd do what he could to help - whatever that means. For the most part, Tom is just taking up space here waiting on a SNF bed to open up. He did not get physical therapy today which is a bummer. That's about all of the news I have. Hope everyone is having a nice weekend.

Friday, May 25, 2012

Recovering

Tom has recovered nicely from surgery this morning. Other than some pain it's been a pretty good evening. It appears Tom will be here until at least Tuesday with the holiday and all. They are having trouble finding a SNF bed from our limited selection. Dr. Rutland indicated he would have to go somewhere soon and it may not be one of our choices. The social worker says he will stay here until a bed opens. I'm trying not to worry about it but we've added a couple of places to the list that really won't be that easy to work with. Tom seems to understand it will limit the amount of time I can visit him but I know he wont like it. The place he wants to go (where he was last year) only has one wound care nurse for the whole facility. That could be a problem. I just keep praying for him to end up in the very best place possible. More updates tomorrow.

Back in roon

Tom is back in his room and awake. Thirsty and hungry! His leg looks really good. I'd take a picture but he won't let me and I know that some folks may not want to see it either. It is mostly closed, just like Dr. Rosen said. No skin graft required either. I wanted to take a "before" picture yesterday but he wouldn't let me do that either. I don't think Tom is moving anywhere today. His nurse didn't know anything about it. That doesn't necessarily mean anything but I would think by now she would know. I think he'll be dozing off a lot this afternoon, which will be best as the pain medicine wears off!

Out of surgery

Dr. Rosen just met with me. He said Tom is out of surgery and did really well. They closed up almost the entire wound except for one small area! He will continue to have the wound vac. The way Dr. Rosen described how the sponge placement would work going forward will be very painful so please pray that we can all help Tom with pain management. The dressing will still be changed three times a week. As much as I don't want Tom to be "in the hospital" another holiday weekend, he won't be home either. Closer to home would be nice but I wouldn't necessarily mind him staying here for the next couple of days because of the changes. Dr. Rosen assured me that any SNF will have a wound team so I will continue praying that God will put Tom where he needs to be. I was really hoping to be back at work by now but will wait until Tom comes back from recovery. I should have plenty of time "sitting around" this weekend to get my "to do" list done. I'm back in his room which has a better Internet connection so that will help! I'll post again later and let you know how Tom is doing. Thanks for your thoughts and prayers for us today!

Just got started

I just received a call that the surgery has started. Hopefully won't be too long before another update.

Off to surgery

They arrived right on time to take Tom to surgery this morning. Tom was a lot more calm today, although the tech who came to get him made us both a little nervous. He didn't seem to know how to get the bed ready to transport. He couldn't figure out what to do with the wound vac. There is a tray that raises up for things like that, which is what they used yesterday, but the tech said the wound vac would fall off so I'm a little worried about his driving skills as well! I'll let you know when he's out of surgery. I have a new Guideposts magazine to read!

Thursday, May 24, 2012

NO SURGERY TODAY

Dr. Rosen is still working on his morning case which will take him into the evening.  Therefore, Tom's surgery has been postponed to first thing in the morning.  They will probably come and get him at 7:30.  The actual surgery will take between 15 and 30 minutes.  I think this really eased Tom's fears.  If a SNF bed is available tomorrow afternoon, he could even be out by tomorrow night!

I got to the hospital and must have just missed them coming to get Tom for surgery which was later than expected.  I was able to catch Dr. Rosen's nurse at the nurses station and she told me it would probably be a couple of hours.  She sent me to the Surgery Waiting Room and told me she thought I could sit with Tom in the holding area.  Once I got down there, they also told me Dr. Rosen would be a be a couple of hours and they were going to send Tom back to his room.  So, I headed back to his room.  Forty-five minutes later, Tom arrived.  Then Dr. Rosen's nurse came in and told us about the extended delay and she put Tom on the schedule for tomorrow morning. 

He was excited to be able to get something to drink and eat!

SURGERY AT 11:30

They are supposed to come and get Tom for surgery at 11:30 today.  I don't know if I can make it back to the hospital by then but will go as soon as I can to be there when he comes out.  He is very apprehensive about it so please pray for peace.  It's almost better when they do the emergency thing, you don't have to sit and wait.

He wanted to look his best - this morning he asked me to wash his hair.  I also helped him shave and brush his teeth.  He looks great!

He is very thirsty.  I thought he would get a small sip of water when they gave him his medication this morning but they are holding that too so brushing his teeth helped him get a little relief for his dry mouth.

Dr. Rutland came in and said everything continues to look great.  They will keep him on the antibiotics for two weeks after his last procedure - hopefully today will be the last one for a while.  I suspect they will need to take him back to surgery eventually to close the wound or graft it or something. 

His hands and arms are no longer swollen but his legs and feet are.  One day they will look great and the next they will be swollen.  It's really weird. 

Physical Therapy will hopefully come in before surgery and get him on his feet.  He is so anxious to get up and move around but it is still very difficult for him. 

I'll update you again after the surgery.

Wednesday, May 23, 2012

Surgery tomorrow

Dr. Rosen came by and changed out Tom's wound vac today. He called me after that and told me the wound looked great and was healing well. He wants to take Tom to surgery tomorrow and pull it together a little to help speed up the healing process. That will happen tomorrow afternoon. So, Tom's departure from the hospital will be delayed until Friday or early next week. That will actually be good because there is no available bed in our first three choices. Hopefully one will open up by then. Pray for Tom, he is a bit scared since the anesthesiologist came in and told him he would be on a ventilator again. I told Tom that was normal and not to worry; it would be different this time and it would be out when he woke up (I hope I'm right about that). He will still have the wound vac. Dr. Rosen is trying to do everythting he can to help Tom be ready when it's time for a liver transplant. The social worker had called just before Dr. Rosen asking me to choose another SNF since our first 3 choices were full. I really didn't have a fourth so I got the list and started mapping out the other options. I found one that would work pretty well but by that time Dr. Rosen had called and the plans had changed. Who knows where he will end up! Tom cannot eat anything after midnight tonight so he will probably be pretty grumpy tomorrow (I know I would be). I'll post updates.

READY TO MOVE

Tom is so ready to move.  He is anxious about where he will go and when, so the waiting is getting hard for him.  Dr. Rosen will be in today to look at his wound when they change the wound vac.  I hope he is pleased by the progress there.

Tom was not in a good mood when I got there this morning.  He had a rough night it seems and he is tired.  He was pretty much laying on the plastic bed, all the sheets were wadded up under his back.  I called for help and they got him on clean sheets and all straightened out.  Of course, knowing they are coming to change the wound vac doesn't help either - it is very painful.  I try to softly remind him that it will continue to be changed 3 times a week so he can work on not letting that ruin every other day.  I don't know if that schedule will change as it heals or if it will be that way until the wound vac is removed.  He was eating breakfast when I left.

Dr. Rutland said they were looking at the rehab that is in the hospital as an option.  It is one of the more "intense" rehab facilities.  I'd still like Tom to get that kind of attention but we'll see what happens.  He really wants to go outside and have me bring the puppies and stuff - that would probably be easier in a close-to-home SNF but we can make it work anywhere.  With the upcoming holiday weekend, there will be more time to try something like that.

He took a few more shuffle steps yesterday.  His legs are still not strong enough to lift them off the ground.  I told him to keep doing the exercises in bed.  His arms are getting stronger so he's able to help get himself comfortable in bed as well as to a standing position when PT is there.  He is still too weak for me to handle that by myself.

I'm not sure the rehab places will have the same expectations for discharge as I have.  When the Vanderbilt rep was here, she asked if anyone would be at home to help him when he got there.  I told her that if it was necessary, we could probably work something out (hint hint:  Cathy & Mom) but I was really hoping that he would be able to get around and take care of himself for the most part.  I don't expect him to be able to climb stairs or anything but to be able to get up and use his walker to get to the bathroom, kitchen, etc.  I'm just not going to worry about it right now.

Other than getting feedback from the Infectious Disease docs, Dr. Rutland is ready to get Tom out of the hospital.  His WBC is down to 13 and creatinine is at 1.  All his electrolytes and vitals are looking good and have been stable.  Even his leg looks a lot better than it did a week ago.

I think Tom is enjoying connecting to some long lost friends on Facebook.  I hope it will keep him encouraged!

Tuesday, May 22, 2012

A good start

Tom's nurse came in this morning and said "I heard you were leaving today or tomorrow"!  Tom and I looked at each other and I asked her if she happened to know where he was going?  She said she wasn't sure yet but they were working on it.

Dr. Rutland came in shortly after and said he knows no reason why Tom needs to remain in the hospital and is working on getting him to a SNF (Skilled Nursing Facility).  The only question Dr. Rutland needs answered is how long the Infectious Disease doctors want to keep Tom on antibiotics.  The surgeon's notes said Tom's leg is healing well so we're happy about that!  All of Tom's numbers are really looking good.

Tom is already talking about me bringing a small grill so "he" can grill out.  I told him I wasn't sure if that was going to be possible!  I would really like to meet with the SNF before Tom is moved so we can discuss his care.  I hope I can bring the puppies to visit too.  We could do that when he was in NHC Cool Springs.  Tom really misses those doggies!

I helped Tom set up a Facebook page last night so if you all are on Facebook, you can search for Tom Burnet in Franklin, TN.  He doesn't have a picture and will probably never post one of himself so I sent him a few pictures of the puppies that might work. 

This morning I helped Tom shave.  It's a scary thing to have your wife at your neck with a razor!! Actually, it was an electric razor and although it doesn't look great, it looks a LOT better.  It still needs a little fine tuning but we can work on that tonight.  He was not bleeding when I left so I think I did a fairly good job!

Tom's friend, Dave, came to visit last night.  That is the best medicine of all for Tom.  He's so much more alert now and the cobwebs are getting cleaned out - he still gets tired easily and is especially tired at the end of the day but that will get better with time.  Dr. Rutland wants to get him moving around a lot more and Tom wants to do the same.  He's getting a bit discouraged by not making more progress in that area.  The hospital PT folks only spend about 30 minutes with him and most of that is just getting him on his feet so he's not been able to do a whole lot.  He has been doing his exercises in bed and there has been a lot of improvement in that area.

The prayers are working!!

Monday, May 21, 2012

Two steps

It doesn't sound like much but it's a big deal when you've been flat on your back for so long. Tom's doctor is putting pressure on the case manager to get him moved out of here as soon as possible! Vanderbilt Stallworth rehab came by for an evaluation at lunch but they are a high- intensity place and I don't think they feel Tom is quite ready for that. She did say that after a few weeks in a skilled nursing facility that we can call her and request a transfer and a lot of times they can do that. Tom's WBC is down to 14 today and his creatinine is down to 1.1. In addition to the physical they this morning, his wound vac has already been changed too. He's eating a lite lunch and will probably be ready for a nap this afternoon. I'd like a nap too. The wound vac pump caused problems again last night. Right as we started our nice dinner, they came in and ended up replacing part of the dressing on Tom's leg. An hour later, we were trying to enjoy our cold dinner. I didn't get home until 9:15 so by the time I got all the chores done, it was getting pretty late. I told Tom we needed to plan to eat at 6 since that is during shift change and they don't respond even if we need something. Maybe then we won't be interrupted. One of the questions I had for the wound vac team was how to reinforce the dressing. Maybe we'll wait see how it does once Tom is more mobile and talk to the rehab nurses about it. Thanks for all your cards and emails. They are so encouraging and really help us get through this day by day!

Sunday, May 20, 2012

Progress

Tom is much more alert (to me) today. Dr. Rutland spent some time with him this morning and reiterated that hopefully by the end of the week, Tom will be in rehab. His spirits have stayed up, he is seeing progress almost every day so that makes a big difference. He said Dr. Rutland told him his creatinine was up today, probably because of the lasix. So they are going to back down on it a little. Toms hands are a lot less swollen. His skin is very dry and flaky. I keep putting lotion on it but it's still stretched out some too and that bothers him. As much as I worry about Tom while I'm not here, he really does a good job of handling things and he is very patient with the staff. They probably prefer it if I'm not here. I think Tom was up most of the night because of the late dose of lasix and problems with the wound vac again. Apparently this time it was a small leak that took them a while to figure out how to fix but they finally got it taken care of. As I mentioned in a previous post, I wonder what kind of issues we will have with it when he gets home and how we will deal with those? Tom is pretty excited about getting something "good" for dinner. I told him yesterday if he would be really careful about what he ate today, I would stop and get him something "from the outside". Fortunately Dr. Rutland told him this morning to do the same thing - that it was fine to do that, in moderation. I like that Tom is more conscious of those things, he's also been doing his exercises in bed. Going home is good motivation! It was really nice to worship in church this morning. I received so much encouragement from my Sunday School class members too. They have carried us through so much and are carrying the Phinneys as well, we are so blessed. If you want to keep up with the Phinneys, they have a CaringBridge site: Phinneyfamily@caringbridge.org. Everyone but Rebecca is now recovering at home and three of the kids were at church this morning. The pictures of their vehicle on the site will shock you. God was surely protecting them. I'm hoping to get home a lot earlier than I did last night. The dogs were fired up when I got home. It was about midnight before I got them calmed down enough to go to bed. I told Tom that would not work tonight! Maybe now that he's had one night on his own it will be a little easier. Tom will have his wound vac changed again tomorrow and will have physical therapy too. Hopefully they will get him on his feet again. That's about it for now. Probably won't post again until tomorrow. Enjoy your Sunday!

Saturday, May 19, 2012

Day 16

Do you believe Tom has been here 16 days!?! Dr. Rutland is on-call this weekend. Not much has changed. Tom's lower legs look a lot less swollen today. That's encouraging to both of us. He's getting ready to receive some IV antibiotics. I don't think he's had any lasix yet either so the nurse is supposed to check on that. I don't know what his blood tests from this morning show, I got the impression I was imposing when I asked about them. I left about 8:15 this morning and went straight to the Y for a kick-box class followed by a body pump class. I'm not sure where the energy came from but it felt good to work out. Then I went to get my nails done. I was trying not to feel guilty about not being at the hospital. When I called Tom, he told me Dennis had been by to visit for a couple of hours, so a big thank you to Dennis! Tom is definitely a lot more talkative. I'm not sure all of the cobwebs are cleared out yet from the sedative but that's ok. The nurse just gave him a big dose of pain med so Tom will probably be out the rest of the night. I'm not sure why he gave so much but whatever. I'm trying to get him to eat some dinner before he falls asleep. I'm anxious to find out who the night team will be, I like to review the "situation" with them if they are new. I will not be staying with Tom tonight, I'm looking forward to being at home and going to church in the morning.

Friday, May 18, 2012

A busy afternoon

I thought Tom would be sleeping most of the afternoon and he had wanted to take a nap but apparently was pretty busy with folks running in and out. He is just now finishing up the second unit of blood. Physical therapy came in and showed him some exercises to do in bed and then made a list for us to practice so we'll do some of those tomorrow. Tom will have physical therapy tomorrow too. The cafeteria has been sending Tom "standard" trays so he's had lots of chicken and turkey. When I was here earlier, I called dietary and marked everything on the menu he was able to eat. Then I placed an order for his dinner. When I got here this evening, he had something totally different! I called back and asked about the dinner I ordered this afternoon because it was a lighter meal that Tom really preferred. We ended up with two of those so there were trays everywhere. We have kept a little off of each tray for Tom's dinner - so he's got lots of fruit to snack on tonight. Believe it or not, Tom's feet don't look as swollen this evening so I'm hoping and praying this fluid will start moving out. I think he's supposed to get another dose of lasix tonight so that will help too. Maybe they will start that soon so we don't have to deal with IV alarms tonight. Had enough equipment alarms last night. Although we have the same nurse we've had the past two nights, I really like the tech we have tonight. She seems very thorough. Tom is hurting some so may request a little pain medicine tonight. Hoping for peace, quiet and healing tonight.

A PLAN OF SORTS

I was able to meet with Dr. Rutland this morning as well as the infectious disease physician.  I'm pretty sure I made Dr. Rutland mad by asking about the fluid.  That's OK, he'll have to get over it - I'm not going to give in.

Tom is doing pretty good.  He has had his wound vac changed so I'm feeling better about that.  His red blood cell count is pretty low so this afternoon he will be getting a couple of units of blood.  They gave him Benedryl ahead of time so along with the Morphine he had for the wound change, he will probably be sleeping all afternoon.  Hopefully the blood will give him some more energy too.  If Physical Therapy comes, I'm not sure they will be able to do much with all the stuff he's hooked up to. 

Dr. Rutland has ordered some more lasix for the fluid.  I wish Tom were on both of the diuretic meds but I'll save that request for later.  They are going to see how two doses of IV lasix do and then go from there.  I asked the nurse about Albumin, but none has been ordered.  Dr. Rutland repeated what he has said so many times about the Albumin not staying in the system very long and I repeated what I have said so many times and that is "every little bit helps!"  I have the case manager and the Liver Center on my side about the Albumin too.  Of course, they will watch to make sure the lasix doesn't upset his kidneys.

I asked Dr. Rutland if there was any "medical" condition keeping Tom in the hospital - well, besides the fact that he's getting blood today.  He said that Tom would be there through the weekend and see what comes open as far as the skilled nursing facilities next week.  I'm doing everything I can to keep things moving and keep Tom motiviated.

Tom has been complaining about pain "everywhere" but I'm sure after laying in bed for 2 weeks, everything hurts.  Add to that the leg and all the fluid pressing on his nerve endings and I will not question how much he is hurting.  They are trying to give him as little Morphine as they can get away with so if he can hold off until tonight, he can get some more to help "us" sleep.

It was midnight before they decided to just shut the wound vac pump off.  It was beeping every 15 seconds.  If I hit the silent button, I was able to get 2 whole minutes of sleep.  I did that for an hour and a half while they tried to find someone who could help with it.  Finally the nurse came in and just turned it off.  Well, that made me very nervous.  I got up and went to the nurses station and asked his nurse if she could call the on-call surgeon in Dr. Rosen's group just to see what they said about it since he is the one who is doing all of the wound vac stuff (she had been calling Dr. Rutland's group).  She came back a few minutes later and told me she talked to Dr. Rosen and he said it was OK to turn it off.  I slept pretty good until 4:30 am.  I was only up with Tom two times and they weren't very long.  It was enough sleep for me.  I'll spend tonight with him and then it's back home.  I can hang around a little while in the morning, go to the Y for my Saturday classes and then get my nails done!  I'm hoping I can go for a bike ride on Sunday afternoon. 

Tom said they told him he would have physical therapy every day - I'm not sure if that includes the weekend.  I'll try to find out when I go back tonight.

Until then, thanks for keeping up with us.  Keep praying for rapid healing!

Thursday, May 17, 2012

LATE UPDATE

Sorry if you've been checking for this update - I've been working on a server again!  Tom is doing well.  He even called me while I was at home tonight - he used the room phone which is easier to dial than his cell phone.  He gets more alert as the day goes on.  They did give him a little bit of Morphine tonight because we just finished changing his sheets so he was rolling back and forth.  The tech was awesome, the nurse leaves a lot to be desired in that department.  We had her last night too.  There is something amiss with the wound vac so she's gone to call someone for help on that.  So much for getting to bed at a decent hour.

Anyway, it's been one of those days where my emotions are like egg shells.  Probably because I am so tired.  I really had to fight the tears this afternoon and when I was on my way to the hospital tonight, the neighbor behind me stopped me and asked about Tom - the tears started to flow.  He's not really been "in the know" about Tom until tonight but was so compassionate and willing to help us in any way.  I just continue to be blessed by wonderful neighbors! 

I think Tom is about to fall asleep and will hopefully rest well if this wound vac alarm gets fixed somehow.  I hope I rest too.  I'm trying to keep my promise to stay with him but sleep would be helpful.  I'm going to try to catch Dr. Rutland tomorrow so maybe I'll have something more constructive to report.

Good night!

Slow progress

Tom is doing ok. He was asleep with his breakfast tray in front of him when I got here. It looked like he was pretty much on his own for most of it but he said he ate enough. I've helped him with part of his lunch just to be sure he Te something. PT came by, Tom sat on the side of the bed but it sounds like that was it. He said he was just so tired. I think they will be recommending he go to a skilled nursing facility instead of rehab. At an SNF he will only get one hour of PT a day which means he will be there longer but rehab would be 3 hours a day and as much s I want him to hve that, he is probably not ready. I asked the social worker to have a couple of rehab places evaluate him just in case but I'm not holding my breath. So, Tom's first choice is the facility close to home where he was before but that one tends to be the most popular, therefore hardest to get a room. Second choice is the facility Emily recommended last night. It's also in Franklin, but several miles in the "other" direction. I had to give a third choice, not exactly convenient but in a decent part of town. We'll make it work as best we can. I think Tom understands the plan, of course, he wants to go home! Dr. Rutland came by this morning but didn't say much according to Tom. He asked a bunch of questions. I received a call from the Liver Center today and we discussed this newest development. Tom's doctor/surgeon there is out of town but the nurse is going to give him the information next week. Once Tom is out of the hospital and SNF, we will schedule an appointment at UAB to get their input on all that has happened. In the meantime, I am going to ask Dr. Rutland to give them a call. I'm still fixated on the fluid. If the amount of fluid contributed to this condition in Tom's leg, something has to be done about it. I still don't know time frames for moving to a SNF. He will probably be here until a bed becomes available. So I'll be praying for that!

A pretty good night . . . for Tom

Tom was able to get some sleep last night, deep sleep.  I wish I could say the same about me.  He was able to fall asleep so easily - sometimes in the middle of an answer to a question!  There were several visits from the nursing staff, which was OK.  He "woke up" about 1:30 and was pretty disoriented but I kind of thought that would be the case which is why I wanted to be there. 

I left pretty early this morning so he really wasn't even awake and probably won't remember me leaving.  I told him I would be back at lunch.  I hope he gets some physical therapy again today - they don't typically work with the patients that long but something is better than nothing.

I requested the wound vac folks come back and look at Tom's dressing.  Part of it was peeling off yesterday and although the "seal" wasn't broken, the edge of the incision was exposed and it made me very nervous.  Apparently there are no wound vac people in the hospital overnight.  They are going to need to make sure to seal that part of it better now that Tom is moving his legs around more.  If the seal breaks, the vac doesn't work and it will need to be changed again.  We will also need to understand how that works when showering.

I'll hopefully have some better info later today.

Wednesday, May 16, 2012

Tom stood up!

Yes, you read that correctly. Tom actually stood up two times during his physical therapy assessment. I wish I had been here to see it! They changed his wound vac too, that didn't seem to be a problem for him. He says his whole body hurts so they have given him some pain medicine. He ate a pretty good dinner and is napping now. We were blessed with a visit from our friends Bob and Emily from Sunday School. It was so good to visit with them and they sure lifted our spirits. Emily also helped me choose some potential rehab places - she is an occupational therapist! They made the rounds to our Sunday School members in the hospitals. The Phinney family continues to improve. Their oldest daughter is recovering from surgery and I understand it's like a party in her room. Rebecca had surgery today, she has two broken legs and two broken arms so she's on the long road of recovery with us. Our prayers for them are surely being answered. I ask that you continue praying. I think the physical therapy gave Tom some confidence but I am staying the night with Tom as promised. I will probably miss Dr. Rutland tomorrow since I need to be at work early. I'm anxious to know what the plan is for getting rid of the fluid. Thank you for reading and keeping us in your thoughts and prayers.

Room 8618

This is Tom's new home. I don't think we've been here so we have a new set of nurses and techs to train. His room is in the corner and he will be able to see out of the windows while he is lying in bed which might be nice (including a view of Krispy Kreme). They chose lunch time as the time to move so now half of his lunch will be cold. I did not plan to spend this much time here. On they finally got him up to his new room, he fell asleep. I met his nurse, Leah. She said she would take good care of him. I told her I would be back later and would spend the night. Tom told me he saw his leg and said it didn't look to good to him. I showed him what the sponge looks like and how it works. I told him it would be that way for "weeks". I'm still not sure he has grasped all of it but that's ok. He is supposed to have a physical therapy evaluation this afternoon. I have a list of skilled nursing facilities and rehab places from which to choose. I am supposed to choose 3 of each. Where he goes will be determined by his capabilitiese when he is discharged from the hospital. None of the intense rehab places are close to home. I'll have to research the others. One is in Baptist Hospital so that may be my first choice. I'm back at work - just wanted to finish this up.

On the move

It looks like Tom will be moving out of ICU today. We've met with Dr. Rutland and Dr. Nedermeyer and they both agree that Tom is ready to move. They also advanced his menu so he is waiting on some eggs. He is still lethargic but knows most of what is going on. He wants me here all the time so he gets upset when I tell him I have to go to work. I told him when he moved into a regular room that I would spend a few nights with him so I guess that will start tonight. His coordination is a little off so he needs some help eating. That help is pretty available right now but will be more of a challenge in a regular room. I asked about physical therapy and that might start today too. They will be changing his wound vac sometime today so he will probably be out of it this evening. He is not complaining of any pain, his stats are good. Dr. Rutland even told him he was doing extremely well considering what he has been through. Tom's response was "that is good to hear". He's much more alert so I'm encourage by that. I know the morphine they give him this afternoon will knock him out again but hopefully he'll continue to make progress. So many people have asked me how I do it, well, I really don't. Your prayers and God's strength give me just enough for each day. Like manna. I was praying for strength even as I walked down the hall to Tom's room. It is moment by moment. I probably experience just about ever emotion at some point every day, negative and positive. It is not fun or easy. Thank goodness for the encouragement of our family and friends! Pray on!

Tuesday, May 15, 2012

About the same

Tom is about the same as he was today at noon. He'll be awake briefly and then fall back asleep. I helped him eat a banana Popsicle and drink some Sprite zero. He will have another protein shake shortly. He is very, very weak and so groggy. I found out that they gave him some morphine this morning so I'm hoping that's why. He still wants to go home but he told me that we need to take it one day at a time. I told him he could go home once he was walking and I was working with the case manager to arrange a place to get him walking as soon as possible once he gets out of the hospital. I ran into Dr. Rosen when I was leaving earlier today. He said they will change Tom's wound vac on Mondays, Wednesdays, and Fridays. I asked "forever?" and he said "until it seals" so I guess as it heals from the inside they use a smaller and smaller sponge until it "seals". He said it could be changed at home as well. Because Tom has not been up, I don't know how much the compression fracture in his back will affect his ability to walk. The doctors told me it would require rest and PT. I don't know how much rest is required but he's been off his feet for 12 days (and counting). Tom kept pulling the oxygen tubing off and he's doing ok without it so they've left it off. He also wants to pull the other monitor leads off so that's been more of a problem. Tom just did great with his dinner: protein shake, jello, and italian ice. Time for me to go!

Lunch update

Not much has changed. Tom is napping most of the time. I was able to get him to drink a protein shake. The nurse drew blood to test his ammonia because he is so lethargic but his ammonia level was 22, which is good. If you call his name, he will open his eyes but not for long. It's just going to take some time. This nurse today is not my favorite, his room was a mess and he just doesn't look as comfortable. She's the one who chased me out this morning so I know I'll have to leave at 6 on the dot tonight. She's not had Tom as a patient before so she doesn't know us. They are allowing him liquids to "eat". I tried giving him some juice and jello but he fell back asleep. Dr. Rutland was here when I came back in for official visiting hours this morning. He said Tom was doing well. I guess they will continue to change the wound vac every other day. Dr. Rutland thought they might move Tom out of ICU tomorrow. Tom was more alert so I didn't ask how long he thought "we" would be here. I'm sure he wouldn't have told me anything anyway or said something like "a while". I'll rush back after work to spend as much time with him as I can.

Still talking

I tried sneaking in before visiting hours this morning and survived about 25 minutes before they kicked me out. Now I'm waiting until they start to go back for just a little longer. I did get to talk with the Resident who came in to check on Tom. He is doing well, no pain, just thirsty. I brought him one of his favorite soda's and the Resident said it would be ok to give him so I'll do that when visiting hours begin. I'll probably get in trouble for that too. His creatinine is 1.3 which is good and his WBC is down to 19 so I'm happy it's moving in the right direction. Tom is still groggy but she thought he would be moved out of ICU as soon as tomorrow. She also said they would begin physical therapy, probably with exercises in the bed. He has a LOT of fluid on his abdomen so it's going to be very hard for him to get up for a while. I don't know if they gave him anything for sleep, it's probably going to take a few days to get all of this sedative out of his system. I'm going to try to catch Dr. Rutland at lunch time today to see what he has to say. It's nearly impossible to catch all the docs, I'd have to spend the whole day here - its not that Tom's not worth it, we've just been through this so much, we kinda know how it rolls. I will call Dr. Rutland if I don't see him today - he's the team coordinator and will have updates from all the others. If anything was amiss, he would call me. Please continue to pray for the Phinney family from my Sunday School class. I think all but one child will be discharged today as well as their dad. Rebecca still has a long road of recovery ahead but she is a Wonder Woman so I have no doubt she will exceed everyone's expectations. When I told Tom last night that they were going to make me go home, he tried to pull himself up to go with me. I told him he probably wouldn't be able to walk yet, his response was "yes I can, let's go". I asked him if he knew how long he had been in the hospital, he said "too long". That's a typical Tom response. I hope he will be able to stay motivated and work hard on his strength. I may ask for some local volunteers to come and spend some time with Tom, particurlarly in the evenings, when he is moved to a regular room. I have some things to do in the days ahead and could use a break from being here so much. Both families are planning to come too. A variety of folks helps Tom too, I wuickly become like a broken record! Heading back now.

Monday, May 14, 2012

OFF THE VENT!!!!!

Praise the Lord, the vent is out. The first thing Tom said was "can I have some ice cream?". So, we're starting with ice chips for tonight. Thank you for your prayers to have the vent removed. His wound vac was changed this afternoon too. It looks better or neater to me. Still pretty big. I didn't get to talk to Dr. Rosen but the nurse said he didn't have anything in the notes about having to trim it again or anything. I think Tom will have to stay in ICU for at least 48 hours after the vent is removed. He's not getting any pain medicine or sedative so although that's good, it may not make tonight very restful. They gave him some morphine before the wound vac change so he probably still has some of that in his system. He wants to talk. Hard to believe if you know Tom. I can't believe it doesn't hurt more. I bet it will tomorrow! He asked if I would sit with him. I told him I would as long as I could. He wanted to know if someone else would sit with him, I told him the nurses were five feet away and his room is right in front of the nurses station. Gotta feed him ice now.

Testing

Tom is being tested on the vent right now. I can't help but watch the monitor and breathe with him, and pray that he can get off of it today. His nurse told me he kept looking over at the chair like he was looking for me this morning. Nothing like a good guilt trip for not being here. They did not do labs this morning which I think is strange. Dr. Neidermeyer wants to keep him on the vent test as long as possible so hopefully that is a good sign. So thats about all I have to report for now.

Sunday, May 13, 2012

One more day

Well, Tom will have one more day on the vent. He did better today but had a couple of apnea instances so they stopped the test and will try again tomorrow. The respiratory therapist felt like tomorrow would be the day. They are weaning him off of as much of the pain meds as possible to get and keep him alert. That will make today and tonight very hard and very long. We both cried when they told us it would be another day. Tom grabbed me and just hugged me tight I hope all you moms are having a wonderful Mother's Day. It's a rainy one here in Nashville. It rained all night and it looks like its going to rain all day. The dogs refused to go outside, they are such divas. We didn't sleep as well last night, I kept waking up but that gave me a lot of opportunity to pray. When I got home last night, I had an email that a family in my Sunday School class had been involved in a head-on collision. Rebecca, the mother, had to be life-flighted to Vanderbilt, the other 5 family members arrived via ambulance. Their youngest is not hurt but the other three children have various broken bones. Their father has a broken leg. All I know so far is that Rebecca has two broken legs and a broken arm. I ask that you lift them up in prayer. My heart is heavy for them. It's really a struggle sometimes for my human brain to comprehend all of the suffering. I know God is with us all, He knows our pain and hears our prayers. I have to keep believing that good will come from it all. Tom is resting now, hopefully he will do that most of the day.

Saturday, May 12, 2012

An anxious start

I really hoped I could have reported that Tom was off the vent, and they tried, but Tom had a couple of pauses that were a little too long so they are going to keep him on it and may try again tomorrow. The nurse thought because Tom has been on the vent so long he was used to it breathing for him. Needless to say he was quite agitated when I got here, and wide awake. It took a while, and some morphine, to calm him down. So I am perched on his bed, holding his hand and typing with my left hand. His throat and leg are both hurting. I don't think he has grasped all that has happened. He just knows he's miserable and it is heartbreaking to see him suffering and scared. He's sleeping now but every once in a while he'll stir and shake his hand. I just squeeze it to remind him I'm still here. The nurses said he was scratching his head this morning so I washed his hair for him. He was cold too so he's back under the warming blanket. I had a little wrap up server work to do until about 10:30 last night and then the puppies and I went straight to bed. We slept until six this morning, it was great! We did some trimming in the yard, cleaned out the fireplace and a few other chores. I got a good workout at kickboxing class too, which I really needed. While I was getting ready to come to the hospital, I received a surprise phone call from my Aunt Charlene (mom's sister), who lives in their hometown of Horton, KS. You may not find it on many maps, it's a small town but holds big childhood memories! It was so good to hear her voice and words of encouragement. Dr. may, who is on call for Dr. Rutland, just came by. He said Tom's kidneys are doing well and not to worry about the vent test, that it would get better. Tom's WBC is up to 19 from 17 yesterday but he said not to worry about that either. Tom is still on antibiotics. His BP is stable, his heart rate is over 100 but has come down from 121 when I got here. I'll probably stay today until they make me leave at 6. I will beg them to keep Tom sedated until tomorrow. I'll plan to be here right at 8, I don't know if they will let me stay with him when they do the vent test or not. If he's awake, I want him to know I'm close by. This new bed is big enough for both of us but is not too comfortable to perch on and there is even less room in the cube to move around. I'm going to try to move to the chair and scoot it as close to Tom as possible. If anything changes, I'll send another update.

Friday, May 11, 2012

A new bed

They just delivered a new bed for Tom. This one is fluffier and has more adjustments so they can "turn" Tom so he is not laying in one position all the time. It was quite an ordeal and Tom was wide awake when it was all over. I asked him if he wanted me to take everyone out and he nodded yes. There were tears in his eyes again which tore me up but we got through it. I asked him if he knew where he was and he shook his head no. I went through the story but I know he won't remember. The respiratory therapist was here when they moved him so I was glad he could check and make sure everything was ok. He also told me they were going to try to take him off the vent tomorrow so that's great news. One of the nurses asked if we had kids, I told her we had two puppies. That got Tom's attention. I asked him if he missed the dogs, he nodded yes. I told him they missed him too but they were fine and it wouldn't be long before he saw them again. They've given Tom some morphine so he's asleep. I turned on the TV so he could sleep to the race tonight. Please, please pray for strength for Tom to endure this setback.

Stable

Tom is such a trooper. I know he is miserable but he's being so strong. His BP is down some and it looks like he might have a bit of a temperature but he's sleeping, so that is best. I'm not sure about his nurse/tech team today, I hope he doesn't have them all weekend or we might have to have a talk. Tom was looking a little neglected when I got here and that just won't work for me. We'll see if they decide to come in and give me an update - which I expect them to do without having to ask. When I left earlier today, a staff member stopped and asked me if I worked here. That actually happens a lot. I know we've been here too much and too long. I'm usually in jeans and I don't wear my work badge but they still ask. I went to the cafeteria to get a bottle of water and I think I got the employee discount! I am pretty good with directions around here too. If I get any additional info, I'll post another message. Praying for a quiet, uneventful night.

Out of surgery

Tom is out of surgery and settled back in his room/cube. He is doing well. I thought he might have nodded his head when I told him he's had a busy morning. I told him all the surgeries were over and now he could just heal. I was at work this morning and planning to come to the hospital around 9. As I was packing up to head out, I said a short prayer asking that Tom's surgery be early so he could get it behind him. At 9 am, Dr. Rosen called and said Tom was out of surgery and on his way back to ICU! Dr. Rosen said the wound still looked really good. He did not see any new infection and he just cleaned it out and trimmed some of the edges. He does not think Tom will need to go to surgery again. He plans to change the wound vac on Monday. Tom's BP looks great. I do not see a propofol drip so it looks like he's just getting the mega pain medicine right now. It also looks like they are still giving him a couple of antibiotics. His heart rate is up but I think that is expected after surgery. At work we often refer to Friday's as "fix it Friday" so hopefully Tom's leg is "fixed". It has been a long week but it has also been a relief to turn over his care-giving responsibilities. I've filled that time doing many things that need to be done and my list keeps growing! I'm pretty sure Tom will remain in ICU another week but once he's awake I'll be spending more time here. I threatened to give Finley and Fritzi Advil PM last night but we all slept pretty good! They take turns jumping up in Tom's chair and sniffing around. It's sad. Since Tom will be sleeping today, I'm going to head back to work shortly. I'll update you later. Pray, pray, pray!

Thursday, May 10, 2012

Responding to me

This afternoon Tom opened his eyes wide and seemed to focus on me. He just mouthed "home" and had tears in his eyes. Yes, there are tears in my eyes too. I told him what was going on and everything was going to be ok, at this point i doubt he really believes me. I know he won't remember this but it is still heart wrenching. I've turned on the tv for him to sleep to. I have signed the forms for him to have surgery sometime tomorrow. They will clean his leg wound and replace the wound vac. He will, of course, be more sedated but after a couple of days I'm really hoping they will take him off the vent. His BP, temp, and everything still look really good. I just need for him to stay asleep. It's too hard to explain all of this and I know he will just be more upset. The nurses have told him the same things, he probably handles it better coming from them instead of me. He looks a lot better than he did earlier today. His nurse, Linda, has taken good care of him today. The respiratory therapist comes in about every 3 hours to check on Tom's vent. They also listen to his lungs. I'll stick around a little longer today just in case Tom wakes up again. Otherwise, I'll post again tomorrow. No work for me tonight so I'm going to go to bed early - if the puppies let me :-)

Tom's new friend

The wound vac will be Tom's friend for a while. Dr. Rosen's words were "for months". Not exciting news but there is a more portable model that he will eventually have that will allow him to walk around and everything. A home health nurse will come to the house to maintain it. You're probably asking the same question I had - about the liver transplant? I asked Dr. Rosen about that too and expressed my concern that the wound vac would prevent it. He said he wouldn't think so. Of course, today Tom is not close to being able to handle that surgery and fortunately, at this time, he is not very high on the list nor would his numbers move him up much, if any. I will call the Liver Center today and give them an update on what has happened. Tom's BP looks great this morning, with no assistance from pressers! It is 120/71. Everything else is stable, he just doesn't look as good to me today. They fussed with him a lot this morning so maybe that is why. His nurse told me he has lots of little skin tears and his arms are "weeping" a lot. We need to pray none of those get infected. Tom's skin is (and has been) like tissue paper. I snuck in early this morning hoping to catch the intensive care doc. They have the unit broken up in three different sections because of construction so he is all over. I seems he is never here when I am. Dr. Rosen said Tom's leg looked really good. He will check it again tomorrow and may take him back to surgery for clean-up. The "hole" is pretty big and a lot of tissue was removed. The good news here is that is less tissue to hold fluid in the future. He said it wouldn't look great as it healed. I told him I didn't marry Tom just for his legs (mine probably looked better 20 years ago too). Regardless, Tom is probably going to freak out when he sees it. I am sorry for not posting last night. After my appointment, I rushed home to the puppies and needed to follow up on some work stuff. I called my mom and I guess I thought if I gave her an update, I gave everyone an update. Anyway, i tied up some loose ends on the previous nights server updates until 11 pm or so and then went straight to bed. My sweet neighbors have been coming over to let Finley and Fritzi out to run around for a while during the day. They seem to get their second wind about 9 pm and want to run around all over the place. It's hard to get them to settle down. It will take them some time to get used to our new schedule. They miss Tom (and their all-day freedom) so much. I scored! Dr. Rutland just came in and said Tom as doing well. He is pleasantly surprised that Tom's kidneys are doing so well. He said they would probably keep Tom on the vent until early next week, simply because he would be going back to surgery tomorrow and then they will continue to have him on the sedative after that. He agreed that the wound vac shouldn't prevent a transplant down the road. Praising God for his mercy and continued improvement. Thank you thank you for your prayers and support on this long road.

Wednesday, May 9, 2012

Improving

Tom's WBC is 12.3 today and his Creatinine (kidney) number is better too. They took him off the pressers at 7 pm last night and his BP is good. His heart rate is hanging around 110 today but they gave him some lasix, potassium, and have backed off the IV fluids some which can cause it to go up. They don't seem to be too concerned. I waited until lunch to try and catch Dr. Rutland but he apparently came very early this morning. Dr. Rosen has not been by yet. He is supposed to assess Tom's leg today. His leg overall is much smaller because all of the fluid has drained from his tissue. Too bad they can't do that with his other leg! Tom continues to sleep under the warming blanket with a steady stream of food through the feeding tube. I want to ask if they can pull up a bed beside his for me, put me in a drug-induced coma and wake us both when this is all over! I was up until 1:30 this morning working on some server updates and then awoke with a really bad headache. I almost came straight here to steal Tom's pain meds and propofol. My head finally quit hurting about 10:45 this morning. They found me a recliner so maybe I can take a nap later. Tom opened his eyes earlier and I gave him a brief run-down of what's going on. He didn't seem too interested. I told him to go back to sleep - which he did. They have reduced the amount of sedative because they need him to respond to them, which he is doing so I guess that's good. I still would prefer he not be fully awake if he is going to stay on the vent. No one really knows how long that will be. Dr. Rosen might need to make that call based on the condition of Tom's leg. The infection control doc just came in to check his leg, Tom didn't like that too much. The doc said it is getting better. There is no way to know exactly what caused the infection, the kind of bacteria that grew is everywhere so even though Tom hasn't really been anywhere lately, it's just one of those unexplained things we've had so often. His leg was sore before we ever went to UAB so I'm certain it wasn't there. Other than the doctors office, Tom hasn't been anywhere else. We didn't even mention the leg the last time he was at the doctor because it wasn't an issue then. The doctor assured me it wasn't my not-always-clean house, hygiene or the dogs so that makes me feel a lot better. I'm going to head back to work and try to stop by again later to see what Dr. Rosen's plans are. I have a 4:15 appointment so if that is not over before the visiting hour blackout, I'll call and get an update and post later this evening. One day at a time, trusting Jesus.

Tuesday, May 8, 2012

Pressers back on

...but just a tiny little bit. Tom's BP dropped a little but is back up now. A couple of times today he was "breathing over the vent" which means he was breathing more times than what the vent was set to breathe for him. It is set for him to have 14 breaths. A couple of times it was up to 20. That's actually a good thing according to his nurse. So now I have a new graph to watch. They are giving him a little more "food" today so that's good. I keep looking at his leg, trying to get over the shock of the size of the wound. I need to ask the doctor how deep it is. I don't think it goes into the muscle or anything but I keep thinking the deeper it is, the more painful it will be not to mention the longer it will take to heal. Obviously it's deep enough for a wound vac. Nothing else has changed. I still don't have a chair. They did find me a stool to sit on - it's not very comfortable. I guess I need to spend more time here in order to get the recliner back. It looks like they are getting ready to start the remodel of ICU. I kind of wonder how they are going to pull that off and not disturb the patients. I don't exactly know what they are doing. I didn't think the cube/rooms were that bad. Tom has been in some patent rooms that could use some work though! I can't think of anything else to report on so I'll sign off. I'm just going to sit with Tom for a while.

Pressers off

The good news for this morning is that they have weaned Tom off the pressers that were keeping his BP up. Right now his BP is 108/50. A little low but still ok. His heart rate is up in the low 80's but the doc said that was ok too. They continue to "tube feed" Tom and he is tolerating that well. It has some protein so hopefully that will help keep the fluid in his bloodstream instead of leaking out into his tissue. I asked about giving him albumin to help that too since he is still so puffy, maybe they will consider it. His WBC is 16 and his Creatinine is 1.4 so that's pretty good. His weight is high even though the one leg has lost a lot of fluid out of the tissue. The rest of his body is holding on to fluid. Apparently I missed most of the doctors visits but it sounds like there are no major plans or changes scheduled for today. So Tom will continue to sleep and heal. I did get a better look at his wound, it looks like the incision is about 8" across his thigh. He's not going to be too happy with that battle scar! The sponges they have in it as part of the wound vac are black so it looks scary. The are still planning to reassess it again tomorrow. More later.

Monday, May 7, 2012

WOW!

They've placed the wound vac on Tom's leg. I peeked at it, it's a large area. It's a good thing Tom doesn't know what's going on. I just can't believe all of this is happening to him! He may go into shock when he wakes up and sees his leg. Dr. Rosen will check the wound vac on Wednesday and re-assess at that time. He might have to remove some more tissue. Most likely Tom will remain on the vent. I guess that's better but I don't like it. The strength to get through this is only from God. Tom is finally getting some food through a feeding tube in his mouth. Poor guy was probably starving. I know he rather be eating a peanut butter and jelly sandwich but he'll have to wait a bit longer. Thanks for keeping us in your prayers.

Procedure in progress

Dr. Rosen (surgeon) is cleaning Tom's leg wound. He may or may not put the wound vac on it. He said it may be too early. Tom tried to open his eyes when I held his hand, I told him to rest. I washed the front part of his hair so he's looking good for his procedure. Tom's heart rate is back to the mid 60's. They removed the internal BP line and are set up to give him some IV nutrition once his leg has been cleaned. It was so good to be at the office today and have the distraction of work. I am so blessed to have wonderful coworkers for support and encouragement too. I really needed that! The hospital called about noon and said they were moving Tom to another room because they are doing some remodeling in ICU. He is now in 5614. They didn't move the visitor chair - I wonder if they are sending me a message. I've not been here that much. I'll have to get them to move one in, especially after Tom wakes up. I'll post another update after the procedure.

Minor surgery

Tom will be going back to surgery sometime today so they can clean his wound more and put in a wound vac which will help it heal from the inside. They will keep it in as long as necessary. I'm glad they have something to help with healing because in Tom's weakened state, it takes even a minor scrape weeks to heal. This is one of the reasons they kept him on the vent. Once the wound vac is in place, they will hopefully be able to wean him off the pressers and vent. Tom wrinkled his forehead and tried to open his eyes when he heard Dr. Rutland's voice. Dr. Rutland said he's not on much lasix at all. His kidneys are doing well and he's surprised but pleased about that. He said if they were going to react negatively to the pressers, they probably would have done it already so I'm happy to know that. Once they get him stable, they will increase the lasix and give him albumin which will help with the swelling. Thomas removed his arm bands because they were getting tight - they irritate Tom anyway. Thomas just told me they will do a bedside clean and wound vac placement between 2:30 and 3:30 today so no trip back to surgery! I don't know how long it will take. I'll send an update later today.

ICU Day 4

Tom's WBC is down to 22.1 so he's making good progress there. His BP has been good, although he is still on the pressers. His heart rate is down to 79/80. He looks really swollen - even his arms and hands. His nurse (Thomas) said they would be addressing that today. It's due to low albumin - hopefully they will be able to give him some. I know it doesn't stay in his veins long, but it helps. They are giving him so much fluid with all of these antibiotics and other meds, they might just have to address one problem at a time. Thomas told me one doc has been in to look at his leg but had no other info. I woke up about midnight last night with a bad feeling. I kept waiting for the phone to ring. Even the dogs were restless. But, there was no problem. Yet more time wasted unnecessarily with worry. Fritzi might have an ear infection so I'll take her to the doctor tonight to get that checked out. That's probably why she was restless. I've managed to keep pretty busy when I'm at home, which should be wearing them out since they follow me everywhere. Last night I was moving pictures around - putting more holes in the walls. I'm trying to get Tom's "man cave" looking less like a storage room. When we remodeled the laundry room, there was no longer room for a couple of pictures so I'm making a place for them. I switched out some pictures in the family room and bedroom too! Everything was still hanging this morning so that's good! I guess I'll sign off for now, maybe then I'll get an update. I'll post as I receive info.

Sunday, May 6, 2012

No changes today

Nothing has changed since I left earlier today. They finished giving Tom 2 units of blood. They have not adjusted the presser med or his oxygen. His nurse said his pulses were good - they measure that in his feet and ankles. I noticed this morning there were black dots on his feet and got concerned. They have marked where to measure his pulses which they do with a Doppler. Tom opened his eyes when I was here earlier. It was a "just woke up" kind of look but he wrinkled his forehead too. I just talked to him and told him to rest - the nurse said he hasn't opened his eyes again. I did take that as a good sign. Tom really hasn't had any nourishment so the nurse said they are going to talk about that tomorrow and determine whether they will feed him through the tube in his throat or his veins. I really hope he will be able to simply eat, but tomorrow may be too soon. I keep saying that on TV they fix really sick people all the time in 60 minutes with commercials . . . What gives? (that is a joke). Still, this waiting is brutal. Normally when Tom is in the hospital, I visit him before I go to work, at lunch, and after work. Since I cannot visit between 6-8 am, I will go to work in the morning and then head over for an early lunch. I want to try and catch Dr. Rutland for an update and he usually comes over between 11 and 1. That's one of the challenges - catching all the docs for a update because there are so many, they come at different times and it's not consistent. We always see his kidney doctor about 7 in the morning, I like that! Tom did have some visitors today. Some good friends from Sunday School came by and I think his friend Dave might have come by also. I feel bad for not being here. I know Tom will appreciate hearing that they came by. Tom has really not minded visitors (when he is alert) as much as I thought he would. I would imagine he gets pretty bored and it's hard that I can't be here all the time. So many of his good friends live all over the southeast, it's not like they can just pop over! Please continue to pray for healing and strength. I know I keep asking but it truly carries us through each day. God bless you all.

Continuing to improve

Tom is even better today. Thomas, his nurse, called me about 8:30 needing my permission to give Tom some blood so he's getting that now. They also have him under this nifty warming blanket which I know he would love if he was alert and the puppies would love crawling under! I think Tom's color looks better today. Yesterday he was every pale, maybe the blood and warmth are helping that. When I got here, Dr. Carr, the infectious disease doctor, had just been in to look at Tom's wound. He said it looks clean. I asked him if he thought they would go ahead and close it tomorrow, he didn't think so. He said the edges will need to be trimmed and it might be best to keep it packed and let it start healing from the inside. Even though Tom is not diabetic, it takes him FOREVER to heal, so this is going to be a long road. They have something called a wound vac that they might use too. I've not seen the wound, the nurse always asks me to leave when they change his dressing. I want to tell him I've seen a lot worse but I just let it go. I asked Dr. Carr how big it was, it sounds like the incision is about 5-6 inches and of course they had to remove the infected skin so I'm guessing its about the size of a dessert plate. They continue to back down on the pressers for his BP. Hopefully he will be completely off that by the end of the day. Dr. Carr said Tom's kidneys were doing well so I'm very thankful for that. He also made the comment that he's just glad Tom survived! God must surely have more work for Tom to do here! He will remain on the vent today. He's still getting 40% oxygen but I look for that to change today too. His white blood cell count is down to 33. I did question the dramatic jump from Friday's reading of 16. Dr. Carr said sometimes it takes a while for the bone marrow to register an infection that bad. On the home front, things are good. The carpets were cleaned on Friday and they look better. Finley decided she needed to remark them so did that almost immediately on Friday night. The flooring replacement cannot start soon enough! Too bad it can't be done while Tom is in here. I almost had a melt down being alone last night. I used to enjoy those times when Tom was out of town and I could do laundry and clean. So, I gathered up all of the dogs blankets and put them in the washer and changed the sheets. Then I went out and cleaned out my car. It was beginning to look like I lived in it with the blanket and pillow from the other night, my bike stuff and all of Tom's paperwork (which usually stays in my car). Anyway, I found the bag with Tom's clothes from Friday and thought something was missing. Then I remembered the ICU nurse asking me if they could cut off the t-shirt Tom was wearing. I had told her to go ahead and not make a big deal about it to Tom - he would want to save it. She seemed pretty excited to be able to cut it off, I told her I could bring a couple of more from home if she liked it that much, she just laughed. How many wives out there wouldn't like to see at least one article of their husbands clothing meet its demise?!?! With the help of Advil PM, I slept well last night. About the time I was drifting off, the dogs got excited and wanted to go out so I got back up and let them out, they immediately jumped onto something and after a closer look, they had caught some sort of animal/varmint and were fighting over it. I put on my robe and rubber gloves and armed with a bunch of plastic bags, I went out and picked up the remains. Then had to haul out the hose and wash the patio. It was not a pleasant experience. I made the dogs sit outside until I got a wet rag and washed out their mouths. Just another crazy day in our lives! I'll head out soon to do a few more errands and go play with the dogs. They are not used to spending so much time in the kitchen. Fritzi is clearly upset that Tom is not home and doesn't want me out of her sight. Finley is taking it all in stride. They have a large stuffed animal to play with and they have managed to tear a whole in the side and love pulling out the stuffing. It's fun to watch them. I'm finding stuffing balls everywhere! I'll post again this evening. Thanks for your continued love, prayers, thoughts, texts, emails and Facebook posts. They are keeping us strong!

Saturday, May 5, 2012

Improving some more

Well Tom seems to be improving. His blood pressure looks great and they've even backed off of the pressers quite a bit today. He's down to 40% oxygen too. He is receiving 5, yes 5, different antibiotics! He is also getting something way more powerful tha morphine for pain. His heart rate is still high because of the infection. I'm still in shock how all of this came about so quickly and try not to think what would have happened if he had stayed at home. I've been talking to him but he doesn't open his eyes or seem to hear. That's fine, I doubt he'll remember being here anyway. I'm hoping that since his BP is doing better he may get to come off the respirator tomorrow. I'd rather them be safe and keep him on it though. Hopefully the stillness is helping his back to heal. His nurse actually thanked me for not trying to wake him up! I don't want him to wake up, I know he is terrified. I wouldn't want to be alert either. Besides, I can't handle seeing that fear or his struggle to talk. He is better off sleeping. He will be awake soon enough. So, tomorrow's blood test results will be interesting after all of these antibiotics. It appears his kidneys are functioning fine which is good news. They will be kicking me out at 6. I'm looking forward to going home and getting some sleep. I'll be back in the morning.

Some info

I just received an update from Dr. Haman, the intensivist. Tom is doing much better (Dr. Haman's words). He said his leg is doing well. The blood tests this morning showed a very high white blood cell count. It will take a few days for the cultures to grow but his thought is there is infection in Tom's bloodstream resulting from the leg infection. Tom is still on the BP pressers and his BP is better. As long as he is on the pressers, they will keep him sedated and on the respirator. He said it will probably take 2-3 days for his blood pressure to come up. They have reduced the oxygen supplement to 50% (it was 100 yesterday) so that is good. Honestly, I expected him to be off the respirator when I got here this morning so this news is discouraging and scary. My wonderful boss came by last night to visit. Having recently gone through the respirator situation with her husband, she helped me understand what to expect. His nurse for today is Thomas. He told me a couple of docs came in this morning and looked at his leg. He wanted to know what Dr. Haman told me (?!?!). Thomas informed me my husband was very sick (duh)! I'm trying to get the exact WBC but due to HIPPA rules, they don't want to give it to me. It's strange that the ER doc printed out all of his blood tests and handed them to me yesterday. I decided on the way to the hospital this morning that if Tom and I ever renew our wedding vows, I am only going to commit to "for better" and "in health". Is that too mean? In keeping with that bad wife vibe, I probably will not sit here all day if Tom is going to be sedated. I was already planning on going home during the blackout hours tonight and staying there. I'll probably go run errands, come back for a little while for any update and then head home. I took the liberty of writing my name and cell phone number on their marker board so they can call me if anything changes. Tom appears to be as comfortable as possible. He doesn't flinch when an alarm goes off. With all these meds hanging over his head, something is always going off. At least I can tease him about all the good sleep he is getting - thanks to propofol. His night nurse told me that a lot of fluid is draining from Tom's leg, which is great. Unfortunately he's probably going to end up with one leg a lot small than the other until the rest of the fluid gets out of his tissue. It would be nice if that can get under control while he is here also. It will sure make the physical therapy for his back a lot easier. The more I think about it, the more it sounds like he is going to be here for quite a while. Some good friends of ours are in town this weekend. Tom was really looking forward to their visit. I'm going to pray that maybe he will be able to get off the respirator and they can visit with him tomorrow afternoon as planned. Just got the blood tests. Tom's WBC is 39.9 - yikes! Normal is below 10. His liver numbers are high but his kidney numbers don't look too bad. I'm going to send them to UAB, it might bump up is MELD score a little. I was bummed to miss my fav kick-box and body-pump classes this morning, not to mention seeing my workout buddies. Maybe I can sneak in a bike ride this afternoon. My legs are getting flabby - can't have that while biking in Tuscany! Please keep praying, Tom is strong and I'm confident he will recover.

Early update

Tom had a quiet night. I did not go in and out to see him. His nurse said he slept most of the night. This morning she gave him a bath and said that when he is alert, he will follow commands and stuff. They will do the breathing test this morning starting at 8 to see if they can remove the ventilator. The nurse doesn't think he will have a problem with breathing. She drew blood for labs so we're both anxious to see what those look like. His BP is better today (106/58) but she bumped up the presser just a little also. She changed his incision dressing 4 times overnight and says it still looks good. His heart rate is down from 135 to 97, but still high. I was fortunate to have a recliner in the waiting room which enabled me to get a few hours of sleep. There were only 3 of us to stay. The security officer was around often to check on us. I did not hear one "code blue" or ambulance. Just one helicopter. I don't wake Tom when I come in. I don't want him to try to talk and I don't want to see the pain in his eyes. It will be better when I come back and he is off the vent. I'm going to head home for a shower and clean clothes and get some love from the puppies. Thanks for praying us through the night.

Friday, May 4, 2012

Surgery!

Where to start?!? Just when I finish one post, there are dramatic changes. When I left you last, they had kicked me out of Tom's cube to put in a pic line. I was told to wait an hour and call to make sure they were done. I went to wait in my most favorite place in Baptist Hospital (NOT): the ICU waiting room. About 45 minutes later, they called for me to come back and sign papers. I figured the pic line was in and they wanted to give him some blood. When I got to his cube, there was a flurry of activity, people running in and out, monitors beeping, red lights flashing. A doctor told me I needed to sign some papers so they could intubate him! I just stared at him and he repeated himself and told me Tom needed to be intubated before he went to surgery!! All of the color (what color there is) must have drained from my face because he said "let me get Dr. Rosen to get you caught up". I said, that would be a very good idea. Dr. Rosen told me he needed to look at the infection in Tom's leg and find out what is going on and surgery is the only way to do that. I signed the papers and got out before I had to see them stick a tube down Tom's throat. Dr. Rosen told me he would meet me in the surgery waiting room. I left the ICU and called Tom's sisters and my mom to let them know what was happening and that they might want to start packing some clothes. While Tom was in surgery, Dr. Rutland, his primary care physician, came in and sat with me and we talked through the events of this past week. He told me Tom was very sick and even if they got the infection undere control, he was concerned about Tom's blood pressure and what the medicine they were giving him would do to his kidneys. It was almost the same conversation we had 14 months ago when Tom first got sick. I guess God has made me stronger because I haven't had a melt-down yet - even when I talked to the family! Since I'm not allowed in ICU between 6-8 am and pm, I went home at six, fed the dogs, got my glasses, toothbrush and a pillow. I thought I would be able to stay the night in his cube but they have told me I cannot. I'll stay as long as I can though. Tonight they have him mildly sedated, with more stuff going into his veins than you would believe. He will stay on the vent all night and will test his breathing starting at 8 in the morning. If he is breathing on his own for an hour, they will take him completely off. He is alerted when they suction his mouth, that breaks my heart. He opened his eyes earlier and I could tell he was very uncomfortable so I'll do better to see him sleep tonight. Thelma is staying at the house so I'm planning to stay here and then I can come in and out. I've had enough tea I probably won't sleep much anyway. They said the surgery site is very clean and they are pleased so far. They will not close it up until Sunday or Monday. It was not as bad as they thought it would be so it's still a concern why his BP and heart rate are so off. His BP has improved but it's still pretty low. The compressed vertebrae in Tom's back (the reason he came to the hospital this morning) are not a concern. In fact the MRI shows he's had them in the past. So although it is painful, rest and PT will be what he gets for that. So, your prayers for me have prevented a panic attack and melt-down and there has been no "lady crying in the hall". I am still very scared. Please pray for Tom's healing. He's not ready for a liver at this moment, but that continues to be our goal. If there are changes tonight, I'll post. Otherwise it will probably be mid-morning tomorrow.

Change of address

So much for the swanky hospital room, Tom is in ICU. His BP is very low and heart rate is very high. There is a spot on his leg that is getting worse before my eyes. It was just red this morning, now it is black and blue. It is my opinion that the nurse in the ER aggravated it this morning, I'm not getting agreement on that from anyone else but it looks bad! They keep touching it and pressing on it too which is killing Tom. When I got in to his cube, he appeared to be sleeping but I told him I was there anyway. He opened his eyes and told me he was "fine". They are getting ready to put in a pic line and give him some more antibiotics (he's had one dose already). I've met with several docs here in ICU, they asked lots of questions about the shunt. I have strongly suggested they call and confer with Tom's docs in the liver center about it. I know they have been in touch with Rutland. They have not said anything about the MRI results, they may not be available yet. I guess at some point on that trip, Tom's BP dropped. His heart rate had been high since he got here. They've kicked me out to out in the pic line. It will take about an hour so back to the waiting room.

In hospital

Tom went to the hospital this morning. His back was hurting him so bad this morning he couldn't move. He has a 20% compression in his lower back which is normally treated with rest and physical therapy. He is currently getting an MRI to check for nerve issues, infection and such. We presume this happened when he fell last week - guess he should have gone to the hospital after all. Please pray that it's not any more serious. He's been assigned a room in the bone/joint center and it's the nicest room we've had here! It's similar to the rooms at UAB. His tv even has a DVD player so I'll bring him some movies. Maybe that will help keep him occupied during his stay. After being at home all weekend last weekend, I have a bunch of stuff that really needs to get done so he may be on his own for longer periods of time. They have a gym right here on the floor for physical therapy. I guess the only downside is training a new set of nurses, techs and docs! They gave him some morphine in the ER but it didn't seem to help much. I brought him a pain pill last night but he didn't take it. His white blood cell count and ammonia level are both elevated. He is not confused or anything, yet. He hasn't had any of his meds today. he is still holding a lot of fluid, I think more in his legs than any place else. Maybe they will get more of that out while he is here too. I was hoping Dr. Rutland might come by at lunch but since Tom is not in the room yet, we may have to wait until the end of the day. Until the pain is better, it's going to be pretty rough for Tom so your prayers for him are appreciated.

Tuesday, May 1, 2012

NO GO

We are back home this afternoon! Things didn't go as planned exactly. Tom's fluid is not "free fluid", therefore they could not pull any off. I guess he has the more expensive kind of fluid! The only way to treat it is with a couple of diuretics so Tom is back on the two he has taken most since all of this started. Because it isn't "free fluid" the doctor thinks the shunt is working fine. It still doesn't make sense to me why there is so much in his tissue?!? Anyway, the doctor didn't think it was necessary for Tom to see Dr. Eckhoff tomorrow so we came home. Tom now has an appointment with Dr. Alkurdi in two weeks so we get to go back. That was a LOT of work for 24 hours. No offense to Tom but it's kinda like travelling with a newborn. The is so much stuff: walkers, wheelchairs, meds, snacks, water/soda, etc. We're feeling kind of like the Charlie Brown/Lucy comic where Lucy keeps pulling the football away from Charlie Brown. Tom really took it hard, and so did I. He is so miserable. His back is still really hurting so he can hardly move. The wheelchair made things easier for this trip, it was well worth the money. I told Tom the new goal was to heal his back and get rid of the fluid so our next trip is much easier. There were 10 people having paracentesis' when we were there today. They come and go all day. It's like a ward setting. I've never seen so many pot-bellies in one place - both men and women. Is amazing how many big jugs of fluid they we pulling off. I was trying to figure out if they were all transplant patients but most were not conversational. They man behind us had liver cancer. They all seemed to only have fluid in their abdomen, not in the legs where a lot of Tom's is. It could be because he has so much extra skin from his weight loss. Anyway it sounded like they were all regulars - going weekly or monthly. I really liked the doctor who was "tapping" everyone. Well, that's the update. I wish it was better news. It is nice to be home though.

Birmingham

We made it to Birmingham yesterday afternoon. It was earlier than I had planned but worked out for the best. After all, nothing has gone according to MY plan anyway. Tom is doing ok. We were a little worried yesterday morning, Tom was pretty lethargic. Friday night, Tom fell in the kitchen while getting some juice. He hurt his back, bit his tongue and has a couple of cuts and scrapes. I called for lift assistance from our wonderful fire dept. but when they got to the house and saw Tom, they thought he should go to the hospital. They called for paramedics and an ambulance. Once they got Tom up and in a chair, he was looking and doing better so he decided not to go to the hospital. Other than a very sore back, he is ok. The back, however, has caused lots of mobility problems in that Tom cannot get up without assistance so I hardly left the house all weekend (but amazingly, got quite a bit done)! Yesterday morning when Tom woke up, he told me he was getting "that feeling" again, meaning confusion. He was not disoriented, only lethargic. I did some work and went to pick up a wheelchair I rented and we agreed to head down here. Honestly, I expected to go straight to the ER. Tom slept most of the way. When he woke up, he was quite alert. I asked him whether he wanted to go to the hospital or hotel, he chose hotel. He did really well all evening. Other than being up most every hour last night he is pretty alert this morning, when he's awake. I will wheel him over to the clinic shortly for lab work and then at 7:30 he is supposed to have the paracentesis. Then we will be done for the day. I so wish we could go home but have to stay for a follow up appointment tomorrow at noon. We continue to ask for your prayers for peace, patience, healing and God's timing. Blessings