Saturday, April 30, 2011

A PUPPY VISIT

Well, Tom has had his first rehab session today and was very encouraged.  He has actually walked to the bathroom without a walker so he is getting stronger by the minute.  The facility is exactly 2 miles door to door so it's so easy for me to go by and then go and do other things.

I took the puppies for their first visit with Tom in 5 weeks.  They remembered him and were not shy at all.  We were watching the end of a movie and Finley snuggled up against Tom's leg and went to sleep (yes we can take the dogs in his room).  In fact, the facility has a dachshund that rides around on the med cart!  I asked Tom if anyone else there was his age, he said "only the nurses"!  What is kind of nice about this place is that the nurses actually wear all white - so you know who they are.

The food and food choices are not that great so I'll probably be taking food to Tom more often than not.  There is a dining room he can go to or they will bring the food to his room.

Other than the TV not being HD, Tom has cable with the Golf Channel and the Food Network Channel so he's in pretty good shape.  He loves movies but they don't have HBO or Cinemax so he'll have to wait until he comes home to get those channels again.

I'm looking forward to getting back to church tomorrow, I'll probably still have time to see Tom beforehand as the dogs have not learned that it's OK to sleep past 5 a.m. on the weekends! 

Friday, April 29, 2011

AND ON DAY 37 . . .

. . . Tom left the hospital!!!  Yipee!!

Tom has settled in to NHC Place in Cool Springs.  It is part nursing home and part rehab facility.  It is a beautiful place.  Tom is one of the youngest (if not the youngest) patients here. 

He arrived by ambulance and was too late for a physical therapy assessment this afternoon so they will get him all set up in the morning.

The day started with a call from the insurance company saying he might not be approved for in-patient rehab and that he might be going home!  That was certainly a bit of a shock so we started talking about what we would need if Tom went straight home.  It was about 1:30 before we knew he would be going to rehab and I had to drive to the facility and sign some admissions paperwork.  Then I went back to the hospital to help Tom pack and wait for the ambulance.

I don't think Tom will be here very long - maybe a week.  I know several people who have been here before and I understand they do very good work.  I think we'll both be more prepared for Tom to come home after a few more days of PT.  Tom scored a private room too which is nice.  They are doing some construction here so his view is not great but he's really close to an exterior door where I can park and come in which is very convenient.  Just about the time we figure out the system, we'll be out of here.

Tom's PCP was very positive before we left the hospital.  He does not make rounds here so Tom will be seen by another physician until his release and will then go back to his PCP for follow-ups.

So, if you did not believe in prayer and miracles, you should now.  Tom's recovery is surely a miracle - just ask his doctors.  We would never have made it without your prayers and support.  Although Tom's recovery will continue for a long time and we still have surgery to face, we are blessed beyond measure for our families, friends and strangers who have lifted us up in so many ways these past 5 weeks.   We praise God for you!

ON THE MOVE

Today is the day . . . Tom is moving to rehab.  We've had a wonderful visit from the kidney doctor who said Tom's Creatinine is down to 1.1 which is right smack in the middle of the normal range.  His bilirubin is now down to 9.1 so still high but not the 32 it once was!!

We are waiting for his PCP to arrive and start the discharge process.  In the meantime, it's breakfast and a shower.  We're just about all packed up and ready to go - I've been taking "stuff" home for the past 3 days!

Tom's case manager doesn't think he will need to be in rehab more than a week and may not even need home health after that so I'll probably call upon my parents to come and stay with us for a few days after Tom gets home just to help.

I'll post later today after Tom get's settled in his new place.

Wednesday, April 27, 2011

MOVING ON FRIDAY!!

Well, Tom is redeeming his "get out of the hospital" card on Friday.  He will be moving to the rehab facility in Cool Springs (Franklin, TN) which is about 3 miles from home!  I don't know how long he will have to be there or any other details yet but hope to find out more this afternoon.

I didn't see any of his docs today but I understand that Tom's numbers continue to improve!

I think it is our responsibility to get him to the facility so maybe I'll be a good wife and take his truck to the car wash (in my spare time) so he can ride in style.  It's not that dirty and could really use a "Jeanne Clean" but there is just no time for that yet.

Please join me in praising our Lord for this fantastic news!!!

Tuesday, April 26, 2011

THIS WEEK?

Tom's doctor is trying to get him moved to rehab this week.  I don't know if that will be to the facility that is housed in the hospital (same floor he's on now) or another facility near our home.  I guess it depends on whether the hospital facility is covered by Tom's insurance.  I know the location near home is covered.  It really doesn't matter to me which one - I won't be able to visit during lunch if Tom is in Franklin but it would be nice not to have that drive home at night and it would also be easier to bring the puppies to visit.  I guess we'll just wait some more and see what happens.

Tom did some walking and exercises in PT today and then walked a little more tonight.  He also took a shower and stood the entire time. 

We started cleaning some of the stuff out of his room in preparation for the move.  He's accumulated a lot of stuff!

Not much else to say at this point.  I'll be late posting tomorrow since I have a 7 am appointment followed by a 9 am meeting.  I won't be by to have breakfast with Tom so will try to have some news to report at lunch.

STILL GOOD

Well, once again, not much news to post - which I guess is a good thing.  The kidney doctor actually saw Tom vertical today and was pretty excited about that.  The kidney number (Creatinine) is down to 1.4.  I think 1.0 is normal so that is super terrific news!

Still don't have a time frame on moving to rehab so maybe we'll know more when the PCP visits.  Hopefully I'll catch him at lunch.

Until then, celebrate the good news with us and keep praying for even more!

Monday, April 25, 2011

REHAB ???

A quick mid-day post to share the good news.  Tom's surgeon came in to take a look at the hernia (at the PCP's request).  So far it looks good enough to leave alone until the liver improves and they can do surgery.  So, we're putting that subject on the back-burner for a while.  The docs have no idea why the white blood cell count spiked but since everything seems to be trending in the right direction they feel it's OK to move to the next step.;

Tom's PCP came in right after that and said although he could let Tom go home, he's not sure that would be the best thing because Tom is still so weak.  So the doc is going to request approval (from the insurance company) for Tom to move to in-patient rehab for PT for a week or two.  There is a facility on the same floor of the hospital so that is what I think the doc is going to recommend.  Don't know how quickly that will happen but my guess would be this week.  His PCP said Tom "could wear his own clothes and do everything he is doing now" but would get more intensive PT.  I think that would be a good thing too.  Tom may need a little encouragement in that area so pray on!!

"REMARKABLE"

This is the word of the day from the kidney doctor.  Tom's kidney numbers, liver enzymes, bilirubin, and white blood cell count are all down!  The kidney doctor seems to be quite amazed at Tom's recovery.  I hope I see his PCP at lunch today and get more good news.

Tom seems to be sleeping better and gets up on his own if he needs to.  He continues to gain strength and fine tune his mobility.  He didn't seem interested in eating breakfast this morning so I made him promise me he would order something healthy - I wonder how that will turn out?!?!

Tom is making plans to come home and wants to make sure I have all of the supplies he will need when he gets there.  I told him I would go by the medical supply store on the way over at lunch to pick up a couple of things he's requested.  I'm sure we will be provided with everything we need but if it makes him feel better that we already have them, then that's what I'll do.  I think we're both beyond tired of the hospital so maybe we'll get a change of scenery very soon!

Sunday, April 24, 2011

FRESH AIR

Yes, Tom finally got to go outside today.  Even though there was not a really great place to take him, just seeing trees and grass seemed exciting.  Since I was "driving" I also took Tom by our little "homeless corner" in the CCU waiting room to show him where we camped out for so long - it almost seems like months ago that we were even there.  Then we traveled down the long hallway to the CCU door - he was very quiet.

After the trip outside, the afternoon was calm.  We both took a short nap, which was very nice.  I left the hospital about 5:45 this evening and have been running like crazy around the house, doing laundry, taking out the trash, eating dinner at home (which I haven't done in 4 1/2 weeks) and trying to get ready for the week. 

Tomorrow I'll try to catch Tom's PCP to see if I can get a plan from him on our next steps - i.e. can Tom go home (or to a rehab facility) soon?  As well has he has been doing, I wouldn't be surprised if they let him come straight home - at least until the surgery.

I keep asking that you continue to pray.  Tom still has a long road ahead and needs your prayers for complete healing - he also has surgery sometime in the future so we still have to get through that.  I am so humbled by all you have done for us - physically and spiritually.  I wish there was some way to repay all of you.  Please know that you are in my prayers also.

HAPPY EASTER

Christ has Risen!  Hallelujah!

Hope you're all having a wonderful Easter Sunday.  I can't remember a time when I wasn't in church on Easter Sunday.  The Easter Bunny was here and brought Tom an Easter basket.

After a pretty good nights sleep, Tom has had a shower and has received a 30 minute hall pass to go outside today.  Maybe we'll hunt some Easter eggs.

The PCP on call said the kidney numbers continue to go down (yipee), the liver enzymes are about the same and his white blood cell count is about the same.  They apparently forgot to check the ammonia level this morning so the lab came back and took some more blood for that.

The docs want Tom to have some more nutrition so Tom is back to having one of the protein drinks he normally has each day (he prefers that over Ensure).  Hopefully that will provide him the nutrition the docs are looking for.

Please continue to pray for improvement in all areas - hopefully we'll be out of here soon!  Cathy and Dave will be heading back to Georgia shortly so please pray for travel mercies.

Saturday, April 23, 2011

NOT HOSPITAL FOOD

Tonight's dinner, prepared by Dave, consisted of salmon, chicken, corn, asparagus, roasted potatoes and zuccini.  Tom will never want to eat hospital food again!  A wonderful meal with family!

Honestly, that's all there is to report this evening.  Tom continues to do well with everything but the itching.  I made another trip to the drug store for more creams & sprays.  They work temporarily but any relief is good.  His blood sugar was high today but we can account for that with what he's had to eat.  They watch that pretty closely here and will adjust it with insulin. 

It was such a nice day in Nashville today.  I offered up the suggestion of "borrowing" a wheelchair from somewhere and going outside so maybe we can pull that off tomorrow.  It would be a nice Easter treat.

Quiet Day

Well it's a quiet day today. Tom received a visit from the kidney doc on call who confirmed that Tom's kidney counts are down again today! We don't have the results of the CAT scan yet, I'm thinking it will be Monday before we know anything.

No PT today but Tom is walking into the bathroom now so that is a workout for him.

The PCP on call just came in and said the CAT scan showed no infection - great news! His white blood cell count dropped from 35 to 25 so that is good news too. The liver enzymes are up slightly but hope that is nothing to worry about. They've been up and down so much we just need to wait for a trend.

Cathy graciously took morning duty today so that I could go to kick butt (I mean kick box) class. It felt so good (thanks Andrea) and it was great to see my friends there. Dave is at our house working on a "honey do" list. Tom and I both could get used to that!

Ok, I guess that's all for now. I'm getting a little frustrated typing on the iPad!

Friday, April 22, 2011

A SHOWER

Probably the highlight today was that Tom got to take a shower!  He had to walk all the way into the bathroom to get to it and he did great. 

Right after I posted this morning, Tom's PCP came in.  He was very pleased with Tom's progress also.  However, the high white blood cell count led him to order a CT scan this afternoon.  That required Tom to have to drink 32 oz. of stuff so they could do a contrast CT.  The doctor is wondering if there is still some pocket of infection in Tom's abdomen.  I'm thankful they decided to do the scan just to see what all is going on but I am concerned at what they might find and if the treatment for it will upset the kidney and liver progress.  So, we will pray that they do find the infection source and can take care of it easily. 

As is usually the case, PT showed up at the same time the radiology folks came to get Tom.  So, for his PT session, he had to walk from his bed, out of the room and to the bed from radiology.  He is really doing well getting around.

I don't have any idea when we will get the CT scan results.  Now that it is the weekend - who knows?  So, we'll have to be patient and see what happens. 

"BETTER THAN EXPECTED"

Yes, that's what the kidney doctor said this morning.  Tom's creatinine is lower today - Praise The Lord!!  This is the doc who used to make me cry every morning because his tone of voice and news was so disheartening!

We also got 7 hours of sleep!  Actually Tom got a little more but I can't remember the last time I had 7 hours of sleep.  Even though it wasn't continuous, it was wonderful!  Tom got up a few times almost entirely by himself.  I would still like to take him for a walk today - preferably outside.  I think the walk would help his back pain too.

The RN's Tom has had for the past 24 hours have been very busy and haven't paid much attention to us so I guess I will be doing "wound care" today because it has not been done.  Tom's wounds are really looking pretty good so it won't be too hard.  His white blood cell count is even higher so it has the docs pretty puzzled.  No fever and no infection.  The kidney doc said it might just be that he has a higher count than normal.  The RN yesterday said Tom's ammonia level was in the normal range.  This is not what we had as the normal range but she said your body makes ammonia so the level will fluctuate up and down so I guess we'll stop worrying about that.

Tom, Cathy, Jenn and I shared a wonderful homemade dinner last night and Cathy is on her way to the hospital right now with breakfast from Cracker Barrel!  I absolutely have to go to the Y in the morning!

Remember this Good Friday and all Easter weekend what Christ gave up for us: 

John 3:16 (Holman Christian Standard Bible)

16 "For God loved the world in this way: He gave His One and Only Son, so that everyone who believes in Him will not perish but have eternal life.

Thursday, April 21, 2011

"VERY PLEASED"

Words from the kidney doctor this morning!  So, kidneys are better and liver numbers are better.  White blood cell count is still high so the kidney doc is going to talk to Tom's PCP about what the cause might be.  They've done every kind of culture they can do and they are all clear - that is good news but we still need to find the root of this infection. His ammonia level was still high too so they will probably be giving him an extra dose of the "yucky" medicine to help get that back down.  Please pray that whatever they find can be treated in a way that won't upset the progress made with the kidneys and liver.

Cathy will be visiting with Tom today.  Jenn is playing with the puppies and she is also going to take them to get their "nails done". 

Our yard now has one less tree.  I'm happy that there was no more damage in last nights storms.  I hope the other 2 trees will survive - at least a little while longer.

It looks like it is going to be a beautiful Easter weekend in Nashville.  I am looking forward to a long weekend and some family time!

Wednesday, April 20, 2011

FAMILY TIME

Tom, Cathy, Jenn and I enjoyed dinner together in his room tonight.  Cathy is impressed with how much better Tom looks.  The last time she saw him he was still in CCU.  Now he is sitting in a chair and walking with a walker.

We have a great nurse who printed out all of his numbers for us so we've got those entered into the spreadsheet.  His kidney numbers are changing just slightly so that's good.  His ammonia level is really elevated and his white blood cell count has been up the past 5 days but appears to be starting to come down.  His bilirubin is indeed coming down so that's exciting.  I would love to find out what the doctors think about the ammonia and WBC numbers.  Hopefully I'll catch at least one of them in the morning.

That's about all that's going on here.  We're still praying that Tom's numbers continue to move into the normal ranges - they are all still quite a bit outside normal but if we can get them all moving in the right direction, we can think about moving out of here!

GETTING BETTER

Tom said both the kidney doc and his PCP said his numbers are looking better.  He said his "bili something" is down - that would be a medical term from a man taking charge of his own health.  Anyway, it is very good news.  I'll get the actual numbers from his nurse later today. 

He had PT this morning and is doing more on his own.  I suggested maybe we could take a walk this evening.

He is not itching as bad but his back hurts him constantly and he is sore from working his muscles.  I told him the more he did, the better they would get.  

Cathy and Jennifer have arrived in town and are on their way to the hospital.  Tom is pretty excited about seeing them.

The weather in Nashville was bad last night.  The nurse came in about 1 a.m. and told us to be prepared for a "Code Gray" (tornado warning) which would send me to the hall in my jammies.  Fortunately that didn't happen.  I was more worried about the tree at home but it survived until the landscaping crew came today and cut it down.  That's a gazillion fewer leaves I have to rake this fall!!

I'll try to get some more definite health info for tonight's post.  Thanks for your patience in waiting all day for this one.  God is good . . . all the time!

Tuesday, April 19, 2011

A NEW CHAIR

When I visited with Tom at lunch today, he had a new chair.  This one is not as low as the recliner that is in his room - now we have more seating for guests.  Tom spent some time in it this afternoon and also walked around his room a little bit.  He sat in it again this evening.  His back is really hurting and so are his muscles.  The docs do not want to give him anything for pain because it will add stress to his liver.  The soreness plus the itching makes him pretty miserable.  I fear it will be another long night.  This type of itching does not respond to cortisone or Benedryl cream, even though we have both.  If they could give him something to sleep, that would help too but won't do that either.

Overall Tom seems to be doing better.  I think moving around more really helps.  He would like to be able to go to his next stop by this weekend but that may be just a little too soon.  I would love that too - especially if they put him in the rehab center near the house, which is my first choice.  They were recommended by several people and I have a friend who was there after hip replacement surgery.  It's supposed to be pretty nice but I won't be able to stay and Tom will have a roommate - don't know if he will like that! 

I will be staying at the hospital again tonight but will be home tomorrow night.  We are really looking forward to having Tom's sister Cathy and our niece Jennifer in town tomorrow.  Cathy's husband, Dave, will be here this weekend. 

I'm going to try to get to work early enough to attend chapel in the morning so don't panic if you don't have a post until mid-morning.

We thank you for your continued prayers.  God's blessings on you all!

NO DIALYSIS!!

OK, this is going to be quick because I need to be working!!  The kidney doctor came in today and said the kidney numbers are up "just slightly" so the kidneys are getting rid of some of the poison.  He was concerned that Tom's white blood cell count is high and ordered the dialysis cath to be removed in case there is an infection at the site (I am beginning to think Tom will get better faster when he leaves the hospital).  The kidney doctor said he still might need a couple of more sessions of dialysis and if so, they would put in a new cath (yuck).  Anyway, I thought it was great news that he could skip another day.

Tom had me up every single hour last night to scratch his back or put cortisone on it.  It is really not helping - another physician friend of mine said that it probably wouldn't help because the liver situation is probably what is causing the itching.  Anyway, about 11 pm Tom insisted he sit up on the edge of the bed.  Against my better judgement (it was late, I was tired), I helped him do this and he did GREAT!  I helped pull him up but he really did most of the work on his own.  We did this two more times (1 a.m. and 3 a.m.) and I let him pull himself up with very little help from me! 

I stuck around this morning while they removed the dialysis cath just to make sure he didn't bleed all over the place.  Tom has lost most of the fluid now (except in his feet) and I know that makes him feel better too.

Just keep praying the kidneys will increase their performance and the liver will start to come around too.  Could that be a tiny light at the end of the tunnel???

Monday, April 18, 2011

DINNER TREAT

Tonight, Tom and I dined on Las Palmas Mexican.  It was Tom's request and since he can't get a burrito from the menu here, we went rogue!  It was really yummy.

I finally got some numbers from the nurse.  I'm not sure she read everything correctly  because there were some jumps where I didn't expect them to be so now I have something to ask the doctors (if I see them).  The kidney numbers do look much better but still above the normal range.  It will be interesting to see what they look like tomorrow.

Tom's biggest aggravation is the itching.  I have tried some spray and lotion to try to stay within  hospital "rules" but may have to break down and get some cortisone because he is just miserable (which means I am miserable too). 

He did have some physical therapy today and sat in the chair for about 30-45 minutes.  His orders are to be in the chair 3 times a day but if PT doesn't come to do it, the nurses don't feel comfortable doing it.  I think Tom is getting stronger and I see him moving himself around in the bed a lot more.  I really think he is over being in the bed and seems more motivated to get out. 

Well, going to go get some cortisone.  Pray that Tom will stop itching!

"GETTING BETTER"

Words this morning from the kidney doctor!!  Tom will not be having dialysis today either - more good news.  Even though his kidney numbers are up slightly (which means the kidneys are not getting rid of the poison ) the doc decided to wait and see what the numbers show tomorrow morning.  I think the kidneys are getting rid of some poison, just not enough.  If the numbers were really elevated then Tom would be having dialysis so I think it is good they are holding off.  That means Tom will get some much needed physical therapy today.  He's had a good breakfast so should have some energy to "work out".  He really wanted to sit in a chair this morning so he'll be doing that too!

I think Tom had an OK night.  I was really concerned when I left because he had my least favorite RN and a new tech that didn't seem really helpful.  One of the "regular" techs was also there, Tom really likes him, so I think he helped Tom last night.  I don't think the puppies and I moved at all!  I'm feeling pretty good this morning and told Tom I would stay with him tonight and tomorrow night.

One of the better RN's is on duty today and I practically begged her for Tom's stats.  The "weekender" nurses didn't really know how to pull the numbers so hopefully some time today I'll get them.  The kidney doctor also said Tom's bilirubin is down some more - I want to see how much!!  The RN said the wound is looking better today too.

Sunday, April 17, 2011

SOCIAL DAY

Tom kept busy this afternoon with some visitors.  His friend and co-worker Dave was here for a while and then Bob and Emily from Sunday School came by.  I skipped out to run a few errands and enjoy a beautiful, sunny day here in Nashville.  One of my co-workers commented that I looked tired this week so I indulged in some new eye cream - hopefully that will help my tired appearance.  I'm sure some sleep in our bed tonight will help a lot too.

Still don't have numbers from the RN's.  I guess it's time to twist some arms.  Maybe we'll have a better RN tomorrow who has provided this info for me in the past.  I'll really be anxious to know what Tom's kidney numbers are tomorrow.

When I got back from errands, Tom was getting some Magnesium via IV.  I guess that means he's not eating quite right.  The DQ Blizzard and Arby's roast beef sandwich I brought him probably didn't help at all.

There was no physical therapy today but Tom has set some goals for this week so I'm going to do my best to keep my mouth shut about it and see how he does without my nagging.

I guess that's all for tonight.  Please keep praying for Tom's kidneys to remove the poison from his system.

AND AGAIN . . .

Well, the PCP was just here.  Todays happy phrase is "making slow progress".  He confirmed Tom's kidney numbers are better and because the kidney output is so high (OK, I said we weren't going to talk about that again but . . . ) they might be overcompensating.  They are going to reduce the amount of the diuretic.  The doc thought that dialysis might be needed just 1 or 2 more times.

The wound still needs attention but the doc said Tom has "bigger fish to fry" than it right now.  He needs to get stronger first.  I think this is going to be an ongoing hurdle for Tom.  If it were me, I'd be up by now (easy for me to say) but he is really struggling with muscle pain.  I keep telling him to push through it but he's not buying that concept.  I don't know what it will take.  The PCP asked if the physical therapists had come in and we said no, so maybe we'll get some PT today.

The doc feels certain that the wound is only open to the outside so no infection is going back inside Tom's body so that is good news.  He still has some swelling (especially in his feet) but that's getting better too.  They can't really do much about the itching, so I spend a lot of time layering Tom with Elta creme.  I think I'm going to by stock in that product - we're using a lot of it.

OK, that's two morning posts.  I'll leave everyone alone for now and see if I can drum up some more news for later this evening.

I hope you all are taking some time to worship our Almighty God today (and every day) - I certainly miss being in Sunday School and Church.

SUN DAY

We have sunshine today in Nashville and it is so much nicer than yesterdays gloom.  It is supposed to be warmer too.  I wish I could take Tom outside for a while (and maybe even bring the puppies to visit).  Hopefully if he goes to a rehab facility soon, he will have those privileges.

Only the kidney doctor has been in so far this morning - this must be our lucky weekend - all of our regular docs are on-call.  He is very pleased with the progress and is just waiting for Tom's kidneys to process the poisons.  Apparently they are doing most everything but that.  It is measured by the amount of toxins in Tom's blood each day.  When he doesn't have dialysis, if the numbers go up, the kidneys are not processing the poison.  So, that is our specific prayer.  Tom will not have dialysis today so we'll see what the numbers are like tomorrow.

I have asked for Tom's stats for the last 2 days (3 shifts of nurses) - I know these folks are busy but I give them a list - how hard is it to write down a few numbers?  I'm going to camp out here until Tom's PCP comes in - with my luck he'll be here at 5 pm.  We could both use a nap or three.  We got about 2 hours of sleep last night.  I'm going home tonight - three nights in a row is a little much (or not enough, depending on how you look at it).  Tom's sister, Cathy and her family are coming to visit this week.  We are both very excited.  Tom is surely looking forward to having someone else to talk to (or nag him).

I'll post again after we talk to the PCP.

Saturday, April 16, 2011

A LONG DAY

For Tom it was long because he spent a total of 4.5 hours in dialysis.  Not all of that was on the machine but you have holding time, etc.  It was also not one of his better dialysis sessions.

Right after I posted this morning, his kidney doctor came in and was all smiles.  He was excited with the kidney "output" (that's all I'm going to say about that) and how things were progressing.  It was very encouraging.

Tom is very tired tonight.  I'm not sure why dialysis makes him so tired.  I told him I was going to bring him a hamburger when I returned from home today but ended up being later than expected so I called and asked the nurse to have him go ahead and order lunch.  I don't think he did.  I brought the hamburger when I got to the hospital about 4:30 and he's also had some soup and hot chocolate.

I was pretty excited to spend some time at home and possibly run some errands today.  I did some laundry, ironing and general straightening of things around the house.  A dear friend from Sunday School came over to install two new toilets.  It's crazy that you get so excited about something like that, but I am.  It was very generous of him to take so much time out of his weekend to help.  He even brought his dog along and the puppies enjoyed playing with another new friend.  I decided to take 10 minutes to sit on the sofa and play with the puppies.  I looked out the window and another large limb had fallen on our fence.  If you're not reading all the blog entries, this same thing happened last Monday too.  So, instead of a short break, I grabbed the ladder and hack saw and started removing limbs.  I was able to drag most of the limbs to the front and have called our lawn service who is going to quote me a price to remove the entire tree.  It is a Bradford Pear tree and they have very soft wood.  We have 3 huge Bradford Pears in our back yard.  They are so beautiful every spring but there are millions of leaves to rake in the fall/winter.  The trees do not typically get as big as ours - I think they support each other so when this first one comes down, I think the others will follow soon.  Each year Tom and I hold our breath during storms waiting for them to split.  Naturally, it would happen to us when he is in the hospital.  I marched into his room this afternoon and told him to get better NOW, I was tired of handling all of this stuff!  Needless to say, I didn't run any errands.

I am happy to report that our income taxes got filed this evening.  I did a manual trial run the other night just to see what they might look like - and thanks to Turbo Tax, we will be paying half as much as I originally figured.  Glad that's done.

We didn't see Tom's PCP today so I will plan to stay here tomorrow and will hopefully catch him then just to get a status report.  The nurses are supposed to be pulling his stats for me.  Because of the long dialysis session, Tom did not receive physical therapy.  There are orders for him to sit in a chair but I think it is with the help of PT personnel (how that is supposed to happen 3 times a day is beyond me).  Maybe tomorrow.
Tom is having dialysis today so he's quickly eating breakfast so they can come and get him.  He'll probably be in dialysis for 3.5 hours which means he'll be out of his room for 4-5 hours.  He has the sports section of the paper and his iPad (but he'll probably sleep).

His RN (a good one for today) said there are orders for him to sit in a chair 3 times a day.  Wonder how long those orders have been in place?  So, he'll be sitting more and more which will be good for him even if he doesn't see it that way.

He's complaining of a lot of itching so hopefully that is the bilirubin escaping his body.  I'm anxious to see the numbers when the labs come back.  It doesn't look like he has a rash today so that is good.  I've brought some lotion from home to help keep him more comfortable.

Don't panic if you don't get a mid-day report.  I'm going to try to get some things done while he's in dialysis but will hopefully have another good report this evening.

Friday, April 15, 2011

CAN'T TOP THAT

There is really not much to add to the good news except that Tom did have physical therapy today.  He sat in the room recliner for about an hour and must have walked somewhere because we have a new walker in the room this evening.  I know it is just tempting him to get out of bed so it may have to be moved into the bathroom tonight.  Tom was a bit grumpy this evening - I'm not exactly sure why, but I've given it right back to him. 

It's beginning to look a lot like our little homeless corner of the waiting room with all of the snacks and treats we have accumulated lately.  Some of it's even healthy!

I was able to cheer Tom up with the dozen or so cards he received in the mail today.  Your notes are so kind.  I received a couple of cards too and your messages brought tears to my eyes (you know who you are). We are so blessed.  I am keeping all of the cards at home and told Tom he was going to have to read every single one of them again when he got home.

I'm not super excited about our RN for tonight so it could be a long one.  We've had this one before and had requested not to have her again but she's back so we'll just handle it.

Good night all!

"HE'S GETTING BETTER"

Yes, those were the words right out of his PCP's mouth today at lunch.  He seemed encouraged that the kidney numbers were down and the Bilirubin was down (which he thought might be a result of dialysis).  I asked about the liver enzymes being elevated and he said it might just be the cells regenerating - sounded great to me.  I also asked about his hernia and it's status.  The doc said they are just watching it but they really can't do anything until Tom is better in the other areas.  Makes me wonder if he might go to rehab and possibly home before having surgery?!?!

Anyway, it looked to me like Tom was getting another rash of some sort with itching but the doc thinks it might be the jaundice.  His PCP has weekend duty so we should see him tomorrow and Sunday.  Tom did not have dialysis today but may have it tomorrow.  If it's a long session, I'll go for some "retail therapy".  He is supposed to have physical therapy this afternoon and his doc said he could get it over the weekend too.

The doc said he might be yellow for a while - as long as he continues to improve, I can handle the yellow - Tom can just wear sunglasses all the time.

Needless to say, it is a happy afternoon.  There is no question our prayers and petitions are being heard so please continue!

SLEEP

We got some sleep last night!  About 6 full hours.  Tom is working on a couple more right now.  I like that this team didn't interrupt us much but I can't give them a high score for responsiveness yet.

Got some numbers.  Good news . . . ammonia level dropped from 53.8 to 48.1 and Bilirubin dropped 2.6 points which is also great.  The kidney numbers were about the same but the liver enzymes were up quite a bit.  Don't know what's up with that but hope to see the docs today and find out.  I know they gave him a new drug during dialysis yesterday so maybe that has something to do with it.

At work we always call Fridays "fix it Friday".  Any issues we've worked on during the week usually manage to get resolved on Fridays.  So I'm hoping today can be "fix it Friday" and we can get some even better news.

I'm going to try to catch Tom's PCP at lunch today, otherwise we go into another weekend with a lot of unanswered questions.  The port they use for dialysis was looking pretty yucky yesterday so I took a piece of tape, wrote a note to "please clean and straighten" and taped it to the end.  Tom came back with it looking pretty good!  I keep telling Tom I'm going to write a note and pin it to his gown - he doesn't think that is as funny as I do but if that's the only way to get information, I'll do it!

Thursday, April 14, 2011

DAY 22

I can't believe three weeks ago we arrived in the ER.  We're still here and, considering the circumstances, that's a very good thing.  No big news to report tonight - it's been pretty quiet.  Soon we'll be going to bed and that will all change!

Tom had about 4-5 hours of dialysis today!  I don't know how they determine how much he needs or should have.  That will be a question for the kidney doctor if I see him in the morning.  Since Tom was gone most of the day, there were no doctor visits.  Tom didn't have physical therapy either.  I think they came by but he wasn't here.  Bummer.  (Tom was probably happy though.)

His hernia wound is now uncovered so that must be healing well - it scares me that it's not protected though.  I haven't seen the night nurse yet to hound her for today's numbers but I'm ready to pounce when she gets here.  Depending on the "inventory" of patients, it can take them a couple of hours to get to everyone to do an assessment.  We are pretty close to the end of the hall - it seems like we're always last.

We still need the kidneys to respond to the dialysis and work on their own (preferably without assistance).  This continues to be my prayer along with improved function of the liver and things like his bilirubin number to come down.  Precious Lord, hear my prayers and the prayers of all who lift us up.

MORNING & MID-DAY POST

Sorry you've not heard from us today.  I was super busy with Tom when I got here this morning and then needed to hit the ground running when I got to the office to catch up on a few things. 

When I left this morning the team was not sure if Tom was going to have dialysis.  They wanted him to go ahead and eat just in case.  I brought him a ham/egg/cheese burrito from Sonic so at least he had a good breakfast.  He did have (or is having) dialysis.  I called about 11:30 to see if he was back in his room and he wasn't.  I thought by now he would be here but his room is empty and quiet so I thought I would stay and write this post because when I get back to work, it will be busy, busy again.

Tom said his night was hectic - I'm not surprised.  He thought he might have a heat rash on his back this morning but I think it was just some of the stuff he was laying on.  I fixed that for him and then added some lotion and a back rub and all was good.  My morning began with 2 puppies licking my face and eating my hair!

I haven't met with any of Tom's doctors today so I don't have a "medical" update to provide.  Maybe later.

Now might be a good time to mention that Tom doesn't know about this blog (at least I don't think he does).  I told our family when we set it up that if Tom survives this ordeal, I won't - when he finds out about this blog.  If you know him, you know he is a very private person so this is not something that will make him happy even though it has been great for the rest of us.  I told him I was originally sending e-mails to key folks in each area of our lives to help spread the word (which is true).  I'm certain he thought at that time that I was blowing everything out of proportion.  The word "blog" has slipped out a few times in conversation but hopefully he hasn't caught on.  I hope that when this is over, the posts and especially the comments will help him understand how sick he was and also how much we love him/care for him/pray for him.  Maybe then he will forgive me :-)  But, I'm prepared to deal with it!

He's not back so I think I'll go get some lunch and head back to work.  I'll be here tonight and will post again this evening.

Wednesday, April 13, 2011

RESTED

Tom was awake when I got here after work.  Guess he was able to rest this afternoon.  He certainly worked up an appetite today.  Since I've been here he's had some peanut butter & crackers from a really nice basket sent by his company, some lemon & blueberry pound cake from our neighbor, spaghetti, orange juice and chocolate ice cream. 

There is no one new on the RN/tech team tonight so that is helpful.  It's still difficult to leave because I really do help him quite a bit and I'm much more responsive.  If he can have PT sessions like today, I know he'll be up and around soon.

I was here for his wound care tonight and hernia area and wound on his leg (new since we've been in the hospital) look much better.  He is still retaining fluid which is uncomfortable but better than being dehydrated.  Dialysis helps some of that, kidney function will too and of course, mobility.

I know I keep asking but please continue to pray specifically for kidney and liver function improvement.  Tom is in control of building his strength and that is his focus.

LOTS OF THERAPY

Tom's numbers are good for the kidneys, a bit higher for the liver (which was expected because of the steriods he is taking) but his white blood cell count has been up and down slightly - steriods affect this also. 

He had a major PT session today.  He sat in a chair, they put him in a wheel chair and made him roll himself down the hall and then gave him a walker and made him walk from the door back to the bed.  Very impressive.  He is sacked out now and is not even interested in lunch.

His PCP said he is "slowly improving some".  We'll take that!

Quick Note

No real news to share this morning.  Tom's RN is supposed to be getting me his numbers from yesterday since they were supposed to run everything.  She said he might have dialysis today too (told you I didn't know anything) so we're waiting to hear about that.

It wasn't exactly the quite night we had hoped.  We had a great team but they were in and out a lot.  I think we both got some sleep between 3 and 6.  I didn't even hear the lab come in to draw his blood!  I heard Tom sleeping while I was getting ready for work - it was music to my ears so hopefully he'll be able to catch a nap or two today.  I'll be going home tonight so I'll catch up then myself.

Tom complained about being cold a lot yesterday evening - he is never cold.  I told him dialysis must have washed all of the warm blood out of him.  He asked me to go purchase him some pajama pants (also a first) so that means I will get to go shopping!!

Check back around lunch - maybe I'll have some news then.

Tuesday, April 12, 2011

A WENDY'S HAMBURGER & A CHAIR

It's been an exciting afternoon for Tom.  Following dialysis today, he had a visitor from my Sunday School class who talked golf with him.  Then he had physical therapy.  He walked some and then sat in a chair for 2 HOURS!  To top it all off, at his request, I brought him a Wendy's hamburger for dinner.  He ate the whole thing!  OK so it may not be exciting to you but it is to us - especially the physical therapy.  He's still awake too.  His good friend Dave is here this evening and I know he enjoys Dave's visits.

As usual we don't know if he will have dialysis tomorrow.  I kind of doubt it, but what do I know?  I hope to be able to hang around long enough in the morning to get some reports on his stats.  I'm sure the kidney stats will be good following 2 days of dialysis so it will probably be a few days before they know if they are working on their own.  Please pray that the kidneys will respond and start doing their thing. 

We're going to try to get an early start on sleep tonight.  Since Tom is tired, I'm going to get my cot ready too - it's usually pretty quiet between 8 and 10 so that might give us a headstart. 

Blessings to you.

ALWAYS CALL FIRST

Lesson learned.  I need to call before coming over for lunch to make sure Tom is back from dialysis.  So I'm sitting in his room alone eating lunch and watching HGTV!

I've got enough food to feed a family of 5 and I have verified it is something Tom can eat so hopefully he'll be happy about having food not on his regular menu.

He's back from dialysis and a little bit tired - but he's eating lunch so that's great.  His nurse is checking on PT so hopefully he'll have that today too.

Our puppies (Fritzi and Finley) had their first play-date this morning with Ollie from across the street.  My photographer neighbor was able to capture our dogs in motion - something I have been unable to do, and they all had a great time.  They get another play-date this afternoon.  Those of you who know me, know that any animals of ours are very, very, very spoiled!

I'll head home after work to unpack and re-pack for another night on the hospital cot.  If it's like last night and we get some sleep - I can do it.  After a couple of nights, I'll go home just so the puppies remember who I am.

Need to head back to work and to my wonderful friends there.  I had the opportunity to see some work friends this morning that I had not seen since all of this started.  They were so encouraging to me and I feel honored that we continue to be in their prayers.

Until later . . .

A GOOD NIGHT

OK so a good night in hospital terms anyway.  We both got about 5 1/2 hours of sleep.  It was in two segments but it was pretty good I think.

Late in the evening we had another "Code Gray" (tornado warning).  I had to sit in the hall for about 10 minutes.  They just turned Tom's bed away from the windows and closed the drapes.

Tom was ready to get up and take a shower this morning.  I'm glad his mind is set on those goals.

Did finally get the numbers from his nurse last night.  Although the kidney numbers went down after his first dialysis treatment, they were back up yesterday morning.  We won't have the numbers for this morning until later today to see the results of yesterday's dialysis.  It will take several days of consistent numbers to know if the kidneys are responding on their own.  His white blood cell count is down a little more.  Everything else they measured is about the same.  Sometimes they don't analyze everything - like liver, ammonia, etc.  We should get the works today.

I still don't know if he's having dialysis today.  I guess I'll know the answer to that when I get here at lunch.

Monday, April 11, 2011

DIALYSIS SESSION 2

Dialysis today went well.  Tom is more tired than last time.  I was here briefly at lunch and was able to catch his PCP for a quick update.  The numbers he provided were the same as the numbers we had Saturday so I'm not sure if they really didn't change or if he was quoting Saturday numbers.  I have requested the current numbers from his RN so hopefully I'll get them.  Although the kidney numbers went down after Saturday's dialysis, they were back up on Sunday.  His PCP said they would plan a few sessions of dialysis to see how the kidneys respond.  Tom said he has it again tomorrow. 

I'm still hoping physical therapy will come back this evening since Tom was not available the first time they came by.  I'll be pretty upset if they just skip it - he needs it.  I did verify with his PCP that the exertion of PT was not hurting anything and he agrees that it is a good thing.  I'm sure Tom appreciates me forcing the issue too.

I managed to get his work-related paperwork completed today with the exception of one tax form.  Why is it always the tax forms that intimidate me.  That is on my schedule for tonight.

They are predicting storms in Nashville for tonight - it is raining right now so we may end up in the hall if there is a tornado warning.  For that reason, I'm glad I'm spending the night here.

If I get any more news worthy information, I'll post again later. 
Well, Tom made it through the night without me.  He complained that an alarm kept going off but he had no IV so I'm not sure what alarm he is talking about.  Haven't talked to the RN or tech either.  He would like me to stay tonight so I am prepared to do that.  The puppies and I slept well at home, just not long enough! 

My sister-in-law Debbie made it home safely - this was her third trip to Nashville since March 24.  She's a trooper!

Tom is really tired of being in the bed.  I hope he will use it as motivation to push himself in Physical Therapy today.  He resists having his feet elevated which would help with the swelling.  We had him in a good position last night to help with that - having finally had some good instruction on how to work the fancy bed.

Hope to see at least one doc before I head to work.  Stay tuned.

Sunday, April 10, 2011

RESTFUL DAY

It's been a restful day today.  Tom has napped on and off and I managed a nap too as we watched a great Masters tournament.

The PCP on call indicated Tom is "holding his own on paper" so I guess the numbers are OK.  Our nurse has struggled trying to get them printed out for us today and now that it is shift change, I'm not sure we're going to get them tonight . . . but I'm going to try.

My plan is still to go home for the night.  We have a good tech who was with us the first night in this room.  He is very efficient so in that respect, I know Tom will be in good hands.  It will be as hard to leave him tonight as it was the first night I left the hospital when he was in CCU.

I'm pretty sure Tom will have dialysis again tomorrow.  I don't know what time he will go or how long he will be there.  We were told that the dialysis team usually gets the patients by noon and dialysis can last about 4 hours.  So, if you don't get a mid-day post tomorrow, you'll know why.  I will be here early to hopefully see his regular kidney doctor and have something to report in the morning. 

Until then, please keep praying.  We are certainly not out of the woods.  We need the kidneys to start working on their own and we need the liver to keep improving.  These are both critical.  Everything else seems to be steady, and we are incredibly thankful for that.

QUIET DAY

It's probably going to be a quiet day today.  The nurse said they normally don't do dialysis on Sundays so I guess that's out. 

It was a busy night, but we managed between 3 and 4 hours of sleep so maybe we'll both be in better moods today.  Absolutely no one came in the room between 8 and 10 last night.  I told Tom that as soon as I got the cot ready and settled in, they would begin the parade.  I was right. 

At the moment Tom is alternating between snoozing and cleaning off some junk e-mail via his phone.  His iPad is here too - I think it would be easier to use that but he didn't want to.

I'm pretty sure they came in and took some blood at some point this morning but I don't have the numbers yet. 

Saturday, April 9, 2011

DIALYSIS SESSION 1

Tom's dialysis session today was about 2 hours.  He was gone from the room for about 3.5 hours.  We think he will have a session tomorrow - no one really seems to know.  If he's on the schedule, they call and then come and get him.

There was no physical therapy today but Tom has been doing some exercises that they recommended.  I am very proud of him.  I know it's painful but I think the activity helps clear out some of the cobwebs too.  He's had a few naps today also!

Our day shift nurse has provided us all of Tom's numbers since he was admitted so Debbie is working to verify we have the right numbers on the right days.  We've learned what to look for so we're charting everything on a spreadsheet (Becky - you must be proud).  The ammonia level has reached the upper end of the normal range and the white blood cell count is going down - yipee; but the others are still too elevated for comfort so we'll see what progress is made with the dialysis.  Of course all the docs and nurses continue to tell us it will take t-i-m-e.

At home, the fallen tree limb is cleaned up.  The lawn care folks cleared the limbs out of the neighbors yard last night but didn't finish on our side of the fence so I thought that might be all they were going to do.  I sent a message for help to my Sunday School class and my Sunday School teacher showed up this morning and ran into the lawn care folks (their chain saw broke yesterday so they couldn't finish the job).  Sorry for the false alarm, Mike. 

Have I told you all what a wonderful support team I have?  All of you are a part of it because you care enough about Tom to read this blog.  I will never be able to thank you enough and I praise God for you and your prayers.

Debbie, Abby and her friend Katie will be going home tomorrow.  It's been such a blessing to have them here again - especially since I am staying at the hospital with Tom. I'll have to adjust the schedule for this week if I continue to stay at the hospital but if I can't get any more than a couple of hours of sleep, that won't work.  If I could only be two places at the same time!!  It will be easier once Tom is stronger and can move around a little more.  I know it will all work out somehow.

DIALYSIS

Tom is having dialysis.  He was quite anxious about going too.  This first session is scheduled to be 2 hours.  I don't know anything about dialysis so I don't know how long it will take before we know if it is working.  I guess his blood work may show something in the morning.  Based on what the kidney doctor said, Tom may have 3 or more sessions of dialysis but I don't know if they will be 3 days in a row or what.  I don't think he's getting physical therapy today.  I really wish he would.  I will talk to his doctor about this next week.  He was really much more alert after being up yesterday and it helps to clear the cobwebs.

We made it through the night however we've only had about 2 hours of sleep.  If he wasn't sick, I would think Tom is just messing with me.  We'd get all settled down and then he would ask me for something.  Between that and the nurses and techs coming in, there was really no rest except from 3 a.m. to 5 a.m.  So we both would love to take a nice long nap today - don't know if that's going to happen (at least for me) - he's probably taking his during dialysis. 

The on-call stomach doctor has been in this morning and only reported that the kidney numbers are a bit higher (which is not good).  So, we are still hoping and praying that dialysis will get them going again.

We're still enjoying our nice big room.  Hope everyone has a wonderful Saturday.

Friday, April 8, 2011

ROOM 6110

Hallelujah!  We are in a real room, it's big, with windows, and a large private bath.  There is also a cot for me to sleep on since Tom has requested I stay here.  He's still in isolation so I'll have to see if it's OK if I can spend the night.  There is a desk area, a recliner and a regular chair.  Can you tell we are excited?!?  The TV is pretty nice too.

What an eventful day.  After standing, and then sitting in a chair for an hour, Tom took a field trip to Radiology to get a cath line installed for dialysis.  They are not going to start dialysis tonight but he is supposed to have it first thing in the morning.  Hopefully Tom will be able to sleep through the night. 

Right now they are giving him a "normal" IV to replace his pic line.  So back to being a pin cushion.  We're waiting for shift change so we can meet his nurse and pepper him/her with questions.

Tom has been waiting all day to watch the Nascar race.  Debbie and I are looking forward to it too :-/

IN A CHAIR!

Yes, that's right.  Tom is sitting in a chair.  This is huge.  We have the GREAT nurse today.  I am excited about it too.  She makes him work really hard and doesn't take any crap!  I was here when PT came and got to see him stand.  It was quite a struggle and he's not happy about any of it but it was so good to see him up.  Please pray that Tom's mind will work hard to convince his body to do what it needs to do and push when he doesn't think he can.  They also gave us several things to work on while Tom is in the chair or in bed.

The kidney doctor said again he's thinking the rash Tom has from one of the newer meds might be upsetting the kidneys.  They are going to give him steriods today.  They are also going to try to start him on dialysis to try to get the toxins cleaned from the kidneys.  Hopefully these two together will re-engage the kidneys.  It might also help the Bilirubin a bit too.  Probably won't do much for the liver but if the toxins are out of the kidneys, it's less work the liver has to do there.  Tom agreed it would be good to follow the doctors recommendations.

His wonderful nurse also talked about moving him to a regular room too.  Don't know when that might happen but it may be sooner rather than later.  She was so encouraging to me this morning about Tom's recovery - although it will be very slow.  I'm up for it but I am concerned that Tom will not be as patient.  I've seen him do many challenging things in his life and I know he can do this - I need for him to know he can do this and give it 200% effort.  Maybe if I book that Hawaiian cruise it will be enough motivation . . .

Thursday, April 7, 2011

NOT MUCH CHANGE

Not much has changed today.  Tom's amonia level is the same as yesterday.  His white blood cell count is down just a little bit so that is good news.  One of the liver numbers is the same, the other is up a little but he's holding steady for the most part.

The new antibiotic that I'm hoping is causing grief for the kidneys was started on the 29th.  We didn't actually notice the rash until Tuesday the 5th so it's a bit doubtful that is the cause but you never know.  The nurse commented that the kidney doctor was very smart so hopefully he'll come up with a cause and solution very soon!

Tom has taken some very good naps today.  I told him he might want to find something to do since he'll probably be up all night.  I even took a 20 minute nap myself.  He woke up when the nurse came in - he responds much better to the nurses than he does to me - I'm OK with that for now. 

I really want to see Tom stand up so I'm going to rearrange my morning schedule a little tomorrow to see if I can be here when PT comes.  Don't be alarmed if you don't get an early morning post.  Maybe the dogs will let me sleep a few minutes extra too.  A good friend of mine went over to let them run around in the backyard this afternoon and to survey a tree limb that my neighbor said was in her yard.  Sure enough, we have a bit of a mess.  It hit the fence and did some damage but it should be easily fixed.  I got online and asked my Sunday School class for some help to get rid of the limb and of course they stepped up immediately.  But my friend was able to arrange for our lawn service (who was there at the time) to remove the limb for me this weekend.  The dogs will love chewing on all of the small branches.  It's been dark when I leave home and get back home and I never noticed a huge limb hanging on the back fence!!

The weather is getting warmer here again so I've enlisted the help of my neighbors to let the dogs out to run around in the yard for a few hours during the day.  They really love it outside and enjoy laying in the sunshine.  Maybe they will work off some of that puppy energy too!

They really don't want Tom to have anything in his room like flowers or cards.  I am going to bring all of the cards we've received so far to him this weekend so he can read through them.  His 2-year old second cousin sent a precious piece of artwork that he colored for Tom.  I couldn't resist hanging it in his room.  The nurses have been admiring it so I guess it's going to get to stay!

Please pray for Debbie, my niece Abby and her friend as they travel back to Nashville tomorrow.  I'm looking forward to seeing them.

Praising God for all of you!

THE RASH

On Monday, Debbie noticed a rash on Tom's neck.  She pointed it out to the nurse.  Each day the rash has been a little worse and I continued to point it out to his nurses.  This morning the critical care doctor said something about it and changed one of the antibiotics Tom was put on (I'm trying to find out exactly when it was started).  Now, I know I've told you that they discontinued the antibiotics to try and help the kidneys but that was only the IV antibiotics.  Tom is also taking oral antibiotics and these have continued to be administered.  All of this gets really confusing at times!!

The kidney doctor came in right after I posted this morning.  He had a theory that the reaction (rash), presumably related to one of the antibiotics, might also be affecting the kidneys.  I thought that sounded like a good explaination as to why Tom's kidney performance has declined a bit the past few days.  Of course, they just stopped the antibiotic today so it will take a few days to see if that is true.  I am praying, praying, praying that it is and the kidneys will rebound.  He said the kidneys are getting enough fluid and although the extra fluid that Tom is retaining might be uncomfortable, it's better than the kidneys not having enough fluid.  So, we wait to see what happens.

The Bililrubin did go up today but only a half-point.  Although up is not good, it's not climbing as much so maybe/hopefully we will see it start to go down soon.

I still don't have any other readings.  It doesn't look like Tom has eaten much lunch and he's been asleep my entire visit (so far).  I don't want to wake him up to ask him about PT so unless someone else or something else wakes him up, I may just go back to the office and let him sleep. 

DAY 15

It's hard to believe we've been in CCU 15 days.  Seems more like 25.  Tom was sleeping when I came in this morning but tends to be taking micro-naps more than sleeping.  He said he didn't sleep too good last night and has a headache this morning.  Breakfast will probably take care of it. 

One of the things I really enjoy is taking kickbox and body pump classes at the Y.  I haven't done this since we've been here, I miss them and my friends there, but here is where I need to be.  This morning, at 4 a.m. my cell phone rang.  I had been up about 3:15 or so to let the dogs out so I wasn't quite back to sleep yet.  I ran to answer the phone and it was Tom.  He wanted me to bring him some caffine-free, diet Mt. Dew!  I told him it would probably be a couple of hours before I got there and he said that would be OK.  He actually has some Mt. Dew in his room but he couldn't get to it.  Needless to say, I've had a 60-minute cardio workout today since it took at least that long to get my heart rate to slow down again!  I was pretty proud of myself for not crying in relief.  Those of you who have been around me lately know I cry easily and often.   

I've not seen any doctors yet but I already know his kidney function is down a bit again today.  Not great news but something we just have to deal with.  They continue to give him fluids and a diuretic.  His amonina level has not changed from yesterday - they are still giving him medicine for this but not as often.  I did find out that his white blood cell count was down yesterday which is good news.

Please continue to pray that Tom's liver function will keep improving and that the kidney function will turn back around.

Thanks to all of you for your kind words and encouraging comments.

Wednesday, April 6, 2011

MORE ABOUT THE SAME

It's been a quiet evening in CCU for Tom.  He did get some rest this afternoon so was much more awake.  PT did not come back so I will check on that again tomorrow to see if I can find out why he's not getting more.  I think it would be really good for him to get up more often.  He ate a pretty good amount for dinner so I think this diet of "normal" food is really going to help his energy level.  I met with his nutritionist today and she said he can really have anything he wants to eat.  I can even bring him grilled chicken if that's what he wants.  I've been eyeballing a chocolate cake he got on his tray tonight but I'll refrain and let him have it. 

No doctor visits tonight.  I would really like to see his stomach doctor - he always lifts our spirits.

Sorry there is nothing more exciting to post tonight - I think this is kind of going to be the way it is for a while.  Please continue to pray that his Bilirubin goes down, that the kidneys get back in gear and the liver function continues to improve.  I know that's a lot to ask but I know God has the power to completely heal Tom.

  “Never will I leave you; never will I forsake you.”  Hebrews 13:5b

QUICK UPDATE

I'm back at work and don't want to take advantage of using work time to do personal business!  (Especially since so many people here are reading this blog!!)

Tom is still doing well.  Kidneys are down a bit from yesterday but liver is slightly better.  Ammonia level is down a little too which is always a good thing.  PT came in this morning and he stood up - I don't think for long though.  The nurse said he is supposed to have PT 3 times a day.  I don't think that has been happening so maybe they will watch that a little closer.  Tom was not interested in having them back in today because he is so tired.  I'm going to have a talk with him this evening about getting in all of his PT sessions.  I think that will help him sleep through the night as well - or he'll be so exhausted he'll sleep.

Will head back after work and post later tonight.

ABOUT THE SAME

It's a beautiful morning in Nashville - I wish Tom could see it.  We asked the nurses about moving him to a room with a window but his back would be to it all the time.  He didn't seem to care one way or another and it's a pretty big deal to change rooms in CCU so I guess we're staying here.

Tom's night was "OK".  He said there is construction in the hospital that wakes him up at night.  I remember hearing them drilling when we were in the ER.  He has a couple of new neighbors too and there are all kinds of bells and buzzers going off across the hall.  He's still pretty tired this morning so I'm sure he'll be catching some naps throughout today.

The kidney doctor was in this morning and said they are about the same as yesterday.  The diuretic is helping but, like the other doctors and nurses, he said it is just going to take some time.  So, we'll wait.  Patience is not of our gifts.

PT should be in shortly after breakfast.  He's still sore but I know it must feel good to get out of the bed and it has really helped his strength.

I'll be heading to work shortly but will be back to visit around lunch.

Tuesday, April 5, 2011

STATUS QUO

Well, not much new to report tonight.  I got back to the hospital a little after 4 p.m.  I will say it is great to work so close!  The nurses have been nice to let me hang out in Tom's room all evening.  So I've kept busy responding to some e-mails and such for work and I ordered 2 new toilets online!  Being the procrastinator that I am, I will also try to figure out how to file an income tax extension since ours are not done and I don't want to have to try to get them done in the next week or so - that's just too much pressure for me :-)

I've heard from Tom's sister Debbie and they made it home safely.  Thanks for your prayers.  I am already looking forward to having Debbie and my niece back on Friday.  Tom's going to get awfully bored with me I think.

I just know you are anxious to hear what Tom is having for dinner . . . his menu has been upgraded again so tonight it is chicken pot pie (a little soupy), green beans and mashed potatoes.  It looked so good, I went to the cafe here to see if I could get the same thing.  I ended up with green beans and mac & cheese.  Tom wanted me to eat with him but I am not allowed to bring in food.

Tom has had a couple of meds to help with his blood clotting and they are giving him a diuretic tonight to help with the fluid retention and swelling.  This will hopefully help the kidney function too.  I think I posted earlier that the liver is improving but the Bilirubin is a bit higher.  Please pray that this will start to go down on its own or the doctors will find out why it is going up and be able to fix it easily.  I talked with Tom's nurse to get her feedback and she said he is improving, it's just going to take time.  He's been quite sleepy tonight. He's trying to stay awake so that he will sleep better tonight.  I offered to aggravate him to try to keep him awake!!! 

I've been a little lax on reading my daily devotions lately so getting back into my routine this morning I picked up one of my favorite books "Jesus Calling" by Sarah Young.  I turned to the devotion for March 24 which was the day we arrived at the emergency room.  I'd like to share it with you:

"This is a time in your life when you must learn to let go:  of loved ones, of possessions, of control.  In order to let go of something that is precious to you, you need to rest in My Presence, where you are complete.  Take time to bask in the Light of My Love.  As you relax more and more, your grasping hand gradually opens up, releasing your prized possession into My care.

You can feel secure, even in the midst of cataclysmic changes, through awareness of My continual Presence.  The One who never leaves you is the same One who never changes:  I am the same yesterday, today, and forever.  As you release more and more things into My care, remember that I never let go of your hand.  Herein lies your security, which no one and no circumstance can take from you."

Psalm 89:15; Hebrews 13:8; Isaiah 41:13

OUR NEW NORMAL - BUT ONLY FOR A TIME

Well, it was back to work today.  I came in to visit with Tom pretty early.  He was already awake.  He said he didn't have a good night and that he was sore.  I asked him why and he said it was because of physical therapy.  I told him that was a "good kind" of sore.

I was here long enough to meet the kidney doctor.  The kidney function is down again today.  He decided to give Tom a couple of new meds (one shot and one pill) and they have him on IV fluids along with some potassium right now.  If the liver function is improving this might be contributing to the drop in kidney function.  It seems they can do much more for the kidneys so as long as the liver continues to improve I guess we can afford a minor decline in the kidneys.  It's probably just something we have to get through.  The bilirubin is even higher so the first report of the day was a bit disheartening.  That made it even more difficult to leave and go to work but my co-workers are the best and really helped encourage me.  I worry about Tom getting discouraged too when we hear reports like that.  I did remind him what the stomach doctor said last night and we need to continue to take things one day at a time.

He requested some caffine-free diet Mt. Dew.  The nurses are allowing him to have a little of it.  He needs to watch the sodium so very little soda is allowed.  Tom typically prefers a flavored water but those have sodium too.  I asked him to drink as much water as he can.

Physical Therapy came in again this morning and helped Tom stand up.  He did even better today and took a few side-steps too.  He said he's still light-headed, which is expected, and it really wears him out.  Of course it could also be the new meds.  Watching him sleep makes me sleepy too.

Cathy and Debbie are on their way home right now.  Please keep them in your prayers.  I will certainly miss them.  Debbie, my niece Abby and a friend will come back on Friday.  Abby will entertain the dogs and Debbie will help me entertain Tom. 

I'll be heading back to the office shortly and will post again this evening. 

Monday, April 4, 2011

CALM AFTER THE STORM

Well, my goal today was to meet with the doctors.  I saw one at 7:30, another at 1 pm, and a third at 5 pm.  Nothing like spreading them out, huh?

I will say that the first report this morning was a bit discouraging.  The stomach doctor (he's really called a gastroenterologist - I can spell that without even looking it up) was the one who lifted my spirits.  His explaination for the high bilirubin is due to the 2 units of blood that Tom received a few days ago.  The liver has to process Tom's own blood and this additional blood with limited capacity - so the processes are kind of backed up in queue.  Although it is high and it is a concern, at least we have a pretty good reason why. 

As far as the kidney function, they have stopped the antibiotics for now to see if that might be causing the kidneys some trouble.  The doctor also thinks that Tom might be slightly dehydrated which will cause the kidneys to slow down as well.  The bleeding from the hernia sight this morning was not as bad as I originally thought.  We really don't want any bleeding but at least it wasn't as bad as it was when the third NG tube was removed.

He is pleased with the improvements in the liver and Tom's responsiveness overall.  Tom is eating additional calories which is helping.  Tom is also iniating and carrying on conversations as opposed to just answering questions.  He thinks Tom may be in CCU another two weeks but won't commit. 

Cathy and Debbie are going home tomorrow afternoon so please pray for their safe travel.  I'm going to head to the office for a few hours tomorrow.  Fortunately it's about 5 minutes from the hospital so I can go back and forth to see Tom during the day.  I know Tom is in good hands and covered by your prayers.

God bless you all!

WEATHER CODE GRAY

We are in a "code gray" situation in the hospital which means there is a tornado warning in Nashville.  As opposed to sitting on the floor in the hall, we are in the Prayer Room - fitting for us.

I spoke to Tom's PCP briefly.  His ammonia level is down to 74.  Normal is 40-50.  He started at 125/130 so that's looking good.  The liver is slightly better, don't have the exact numbers on it but it was good news to hear.  They continue to monitor the white blood cell count which has been up over the weekend.  Bilirubin remains a concern as well.  Tom's is at 22, normal is 1.  There is no treatment for lowering this, it's something the liver needs to do.  The hernia area bled when Tom stood up this morning and it took a bit of effort to get it stopped.  The liver makes clotting factors too - we need some more of those.  His PCP had not met with the stomach doctor yet so maybe we will get some more information from him.  They are changing his antibiotics to see if different meds will help the kidneys.

Tom will remain in critical condition for the duration of his stay in CCU.  There is no time frame at all on this, I can't even get a "guesstimate".

Please pray, pray, pray for the bilirubin to come down and the liver to continue to improve and make some clotting factors.

NOT REALLY AN UPDATE

Just checking in to let you know how much fun it is to sit in the waiting room or Tom's room and wait . . . NOT!

Tom's kidney doctor came in briefly this morning and said his kidney function was not as good as it was on Friday.  This was, of course, disappointing.  The doctor said there is really no way to determine exactly why so I think they are going to change his antibiotics to see what that does.  He said it's just a hit and miss kind of thing.  Don't have any more test results yet.  Tom's PCP came in briefly while Tom was getting physical therapy.  I was quite upset that no one told me.  The doctor could not stay long and said he would come back at lunch so I verified that they knew to call me when he returned.

Physical Therapy:  Tom had his first physical therapy appointment today.  He stood up!  I was not in the room so when I returned I asked him how it went.  He said "not too good".  I asked why and he said he got lightheaded.  I told him that was expected and it was OK.  They sat him down and stood him back up again.  I know that must have felt great.  They encouraged him to move his legs which would help the blood circulation and swelling.  Overall I think he was pretty happy. 

Hopefully they will call soon and I can get some more information from the doctor.

Sunday, April 3, 2011

MINUTE IS UP

Sorry - that has been a really long minute!!

Tom has just finished eating a more solid food dinner.  It consisted of cream soup, yogurt, pudding, milk, etc.  He let me drink his sweet tea.  He now has possession of his iPad so he's pretty happy about that.  Don't know how secure it is going to be but we'll just have to take that chance.  The wireless network here has been pretty good.

He starts physical therapy (PT) tomorrow which will also be very good for him.  I am anxious to meet with the doctors (hopefully in the morning) to see what they think of his progress this weekend.  All three of us are going home tonight - scary for me because I just hate leaving him. 

Some good friends of mine came to visit after church today.  He is a medical doctor and sat down and basically said give me all of your questions.  We unloaded on him!  His answers were so much easier to understand - what a gift!  He also gave us some good questions to ask and followed up with providing his cell phone number so we could call or text him the answers.  They brought food too!  At the end of his visit, he led us in prayer.  We are so very blessed by wonderful friends.

My niece and nephew sent some beautiful flowers - Tom cannot have them in his room so we will enjoy them at home.  They also sent lunch from Pizza Hut - pasta, breadsticks and chocolate dessert sticks . . . yum!

Probably the worst part of leaving camp CCU is we will have to relinquish 2 recliners.  There are only 3 in the entire waiting room.  It took us 2 days to "acquire" the two we have.  So tomorrow it's back to the uncomfortable chairs - all locked together - in a big row.  I'm going to try to post some pictures so you can see where we've been living these last 11 days.


Camp CCU

Tomorrow's first post might be delayed depending on when we can see the doctors.

ADVANCING

Thanks to my wonderful sisters-in-law, I went home and slept in our bed with our 2 puppies last night.  It was so nice!  Tom had a good night too.

Although the nurses and doctors continue to tell us Tom is still very, very sick, he is also pretty stable so the critical care doctor said we should take this opportunity to go home and rest at night.  We're probably going to start doing that - just may need a tractor-trailer to move out of camp CCU.

A couple of doctors have come through and provided a bit of an update - don't get much on the weekends.  A surgeon came by overnight and decided Tom is not a candidate for surgery right now.  The infection is still present and the liver function is s-l-o-w-l-y improving but it's not making the clotting factors necessary for them to feel comfortable with surgery.  That's good with me right now too.  I'm not sure I could handle Tom being put to sleep.  The nurses are guessing he will be in CCU another week.  His white blood cell count has gone up but they are watching it and don't seem to be as concerned about it as I am.  His ammonia level did drop some more so that's very good.

Tom got to have coffee this morning and I think they are going to allow him to try some solid foods.  He told Cathy he wanted a hamburger - don't think he's going to get that.  He may start physical therapy today or tomorrow too which would really help.  He is getting really tired of laying on his back and being unable to move. 

The nurses told us that often CCU patients will get "sundowners" in the evening.  There are no windows in his room so he doesn't really know day from night.  Starting today we are keeping the lights on during the day to help him out a bit.  With "sundowners" the patients get kind of confused in the evening.  Tom thinks he is getting up at night and filling up his water pitcher. 
This is Cathy now.  A friend of Jeanne's has come to visit so she will finish her post in a minute...

Saturday, April 2, 2011

Evening of day 10

This is Cathy. Today has been a difficult day. We've had conflicting doctor reports. It is sometimes confusing for us to understand the complexity of Tom's condition. He had an ok day. The evenings and nights he seems to be confused.
The doctor was clear that it would be ok to spend the night at home now. He stressed how important it is for Jeanne to get a good nights sleep and take care of herself. You'd think we would be elated; however, it is very difficult to leave him. As hard as it has been to spend 10 days and nights in the CCU waiting room, there is comfort knowing he is just down the hall. So, the three of us prayed about it and decided that Jeanne will go home tonight and Debbie and I will stay the night. It comforts Jeanne to know we are here. Please pray that Jeanne sleeps peacefully tonight.
Please pray that Tom's ammonia level goes down and his liver function improves. (a note: One of the doctor's told us the saying "I love you with all my heart" should really be "I love you with all my liver" because the liver does so much for the body. It performs approx. 250 functions for the body).
Lastly, please pray that Tom has a better day tomorrow. We are all weary after today. I know that Tom's condition staying the same is not a bad thing but we would love to see some steps forward tomorrow.
Praying for God's peace that passes all understanding... Cathy

Day 10 in CCU

This is Debbie writing the morning post for Jeanne as Tom has been requesting Jeanne's company. Tom's weekend nurse has been most helpful this morning. She allowed both Jeanne and I to ask numerous questions and she answered with an understanding and discerning heart. The specific issues we are looking at that are keeping Tom in critical care are his ammonia level and his liver enzymes. Both of these levels are coming down slowly, however, they are still extremely high compared to the optimal levels.  Tom remains very tired. He is sleeping alot, but when he is awake he is talking and answering questions just like our Tom. Tom's white blood cell count has gone back up and his nurse mentioned that the Dr's are hoping to perform a laparoscopy this week to locate the actual site of the infection. We are praying that this happens. Both Cathy and Jeanne had a bit trouble sleeping last night in the CCU waiting room. After a little talk, Cathy and I got Jeanne to consent to spending the night at home tonight. Those of you who know Jeanne know that she is a caring and compassionate person. She has been an attentive wife and friend to Tom. She wants to make certain is he is not in need of anything. This makes her consenting to go home much harder. Please pray that she does sleep at home tonight and sleeps well.
Please pray that Tom's ammonia level and liver enzymes continue to come down, and pray for Jeanne to stay well as she is burning the candle at all possible ends.

Friday, April 1, 2011

Goodnight

Jeanne asked me to post tonight. (This is Cathy). Tom is staying awake for longer periods of time and wants Jeanne to stay with him. :) We received the results of his blood tests from this morning: his liver function is improving and his ammonia level continues to go down. That is good news! He is still very yellow and his bilirubin has increased slightly. Our prayer today (and the doctors focus) is on getting his ammonia level down.

Tom is thankful to begin a liquid diet. For dinner he had broth, jello and tea...yum! He also is enjoying popsicles and sprite. All three of us (Jeanne, Debbie and I) are encouraged that we can spend more time with him while he is awake. He has been sleeping for so many days it has been difficult (as his sisters) to resist painting his nails! For those who know Debbie, no, she did not paint his nails. She has behaved in spite of it being April Fools Day.

We continue to meet some wonderful people in the CCU waiting room. They have been a blessing to us. I cannot even begin to thank Jeanne's and Tom's coworkers, church family and friends for their visits, meals, texts, phone calls, cards...I could go on and on. Debbie and I are also thankful for our family and our friends "back home" for lifting us all in prayer.

Please pray that Tom's ammonia levels continue to go down and join us in thanking God for His mercy and comfort during this time. We thank God for you!
The nurses came to draw blood to run tests on Tom's liver function and ammonia level status so it will be a couple of hours before we have those results.  The plan is "supportive care" until the liver is functioning better and the ammonia level is lower.  Tom is thirsty so we are giving him as much water and Sprite as he is willing/able to drink - which is a lot.  He's also had another Popsicle - cherry!  We're visiting him more often now so we can fill him with plenty of fluids - this will also help his sodium level which is a bit high.  Kidney function is great.  They continue to give him antibiotics as well as magnesium, phosphorus, and potassium intravenously since these nutrients get depleted by the antibiotics.

Tom is not quite as alert as he was yesterday.  When the stomach doctor said this, Tom said "really?"  I told him not to get discouraged - it is not a bad thing.  He's tired today too but then again, he had some rough experiences yesterday.  ESPN is the channel of choice at the moment (go figure).  Although I think he will enjoy being able to watch every play of the Masters next weekend, I didn't have the heart to tell him he would still be here then.

April Fools

No April Fools jokes here - that would probably take too much brain power and might freak a few people out!

Tom is doing well this morning.  He's been drinking lots of water and Sprite.  I was hoping he would have a breakfast tray but maybe it's too soon.  He said he's feeling "fine, considering".  He's a lot more alert and moving more too - I can't imagine how uncomfortable he must be.  It will help him build strength to move around though.  I've not seen any of his doctors yet - I'm going to continue to go back and forth and hope I can catch them.

Cathy and I are happy to report we slept pretty well last night!  It was indeed quiet so I know you all prayed for that for us.  Thank you.