Monday, July 25, 2011

GASTRO APPT

Today's appointment with the gastroenterologist went pretty well.  The doc didn't see anything alarming on the blood test results, however, I placed a call to Tom's PCP to get his thoughts but did not receive a call back.  Tom has an ultrasound scheduled for Wednesday morning just to get a status on things.  The doc doesn't expect to find anything but I appreciate that he is being proactive.

Tom is not too sure about the gastro doc.  When he was talking to "us" today, he was mostly looking at me.  I wanted to point to Tom and say "that is your patient" but I held my tongue.  I can't say that he is my favorite either but he seems to have a plan and I do like that.  I told Tom the next time I would let him go by himself and the doc would have to look at him.  I also told Tom that if he wanted to switch doc's he could.  So I'll let him make that decision.  I think he's afraid he will have to start all over but he can switch to the other doc in the same practice which happens to be my first "favorite" doc that saw Tom when he was in critical care.  The gastro docs are part of the same practice as Tom's PCP so they should be able to share notes easily.

Tom will not see this doc for another month.  Basically he wants to see how the next two months go.  Hopefully Tom's health will remain stable and everything else will continue to improve.  Meanwhile, Tom had a surprise physical therapy appointment today.  It was originally scheduled for tomorrow but the therapist called and changed it to today.  We had a fun-filled day with some friends yesterday, swimming in their pool so Tom has received quite a workout the past two days.  I think it's great.  Tom . . . not so much!

We had a fabulous meatloaf dinner tonight - courtesy of Tom's sisters.  I even had time for a short ride on my new bike afterward.  I realized tonight that we have reached the second half of summer - it's getting dark earlier.  I know a lot of you are happy about that but I'm bummed.  It hasn't been the happiest summer but I'm still out for some downtime for both of us - even if it's just a long weekend away.  We have 3 new babies in the family that Tom and I have yet to meet so I'm hoping in the next few weeks he will get strong enough to take a trip to Georgia.  I'm also hoping I can order up some more food and pick it up while we're there (hint, hint)!!!

Hope everyone has a good week.  If there is anything new to report, I'll post.  Otherwise - stay cool, pray for rain (at least for us) and please pray for continued healing for Tom.

Friday, July 22, 2011

DR APPT FOLLOW-UP

Thanks to you all for being patient and waiting for this next post.  There really hasn't been much to report.  Tom had a follow-up doctors appointment this afternoon and as far as we know, all is well.  The doc was pleased with how Tom looked.  Of course, blood tests were done so we'll have to wait until next week to get those results.  Tom has an appointment with the gastroenterologist on Monday morning.  Hopefully that will go well also.  I'm hoping the blood tests will be done by then but I don't know how fast the doctors office works.  They had to stick Tom SIX times to get enough blood.  It was painful to watch and I know even more painful for him!

It's been a busy week.  Tom has had two visits from the home health nurse and two visits from the physical therapist.  The highlight of the week was a visit from his Aunt Laurie and Aunt Jane who stopped by for a couple of hours on their way to Atlanta. 

Tom has done really well with his diet and fluid intake.  He could probably stand to have more protein (for energy) but he stayed away from all of the forbidden foods this week.  The doc said today that he could reduce the amount of one med he is taking and can occasionally have a steak, hamburger or seafood.  Tom is pretty excited about that so maybe we'll go out for a nice dinner this weekend.

Last Saturday, I returned home from getting my nails done to find Tom's sisters, Cathy and Debbie, and our niece, Abby sitting in our family room!  I was so excited.  Not only that but they brought LOTS OF FOOD that Tom can eat and the most amazing made-from-scratch birthday cake . . . with candles!  I haven't had a birthday surprise like that in a long time.  They were probably worried that Tom would starve with my cooking so we now have a freezer shelf full of taco meat, spaghetti sauce, mashed potatoes, and meatloaf.  They also brought buffalo chicken dip, grape salad (which Tom loves) and homemade chocolate chip cookies.  It is wonderful!  They drove 4.5 hours one-way to see us and then turned around and drove home.  Now that's LOVE!

Tom is planning to get up and go get his hair cut tomorrow morning while I'm at the Y.  He's been working hard to regain his strength and feels like he is strong enough to get in and out of his truck.  He is not "foggy" either and that has made a huge difference (for both of us).  We have been invited to our friends Dennis and Diane's house to swim on Sunday.  We're both looking forward to that.

That's about it.  I'll post again after the appointment on Monday.  Pray for more good news.

Have a great weekend!

Friday, July 15, 2011

EVENING DRIVE

The highlight of yesterday would have to be the evening "family" drive.  I think it's good for Tom to be able to get out of the house and since we purchased a booster seat for the puppies, it seemed like a good time to try it out:


The puppies enjoyed it.  We rode around for about 45 minutes.  Finley (red) ended up laying down, Fritzi still wanted to get out.  At one point, she managed to "jump" onto the console of my car.  Neither one of us could figure out how she did it - we just looked down and there she was!  I had to stop the car and put her back in.  There is a way to secure them but they don't have harnesses yet so I didn't want to attach the strap to their collar.

Last night I told Tom he could just about have anything he wanted to eat.  He had done so well all day with his sodium and protein intake.  He chose to have some sherbet.

While we were out driving around, his sister called to tell us she had been on the Internet searching for low sodium, low protein foods.  (What a blessing to have help).  The one food that kept coming up was dog food.  So, guess what Tom is having for dinner tonight?!?  I know how to prepare dog food!!  The puppies get oatmeal for dinner so Tom can have their Puppy Chow.  My niece has also sent me a link to MealsForYou.com so that looks like a good source for other ideas - maybe even some for Tom!

A home health nurse came by to see him yesterday.  She didn't have orders for blood work or anything but it was still a good thing for her to check on Tom.  An occupational therapist is supposed to come by on Monday I think and he will probably have physical therapy at least one day next week. 

He was to have lunch with his good friend, Dennis, today.  I'm still waiting on him to call me and tell me how that went.  I'm guessing I will have to wait until I get home unless I call him.  I know he was looking forward to it.

That's about it for an update.  Don't panic if you don't hear from me this weekend.  Lots to do!!

I'll leave you with another picture of the puppies.  They sleep with us, of course.  They are in the middle of our bed.  The blue thing is a heating pad:

Thursday, July 14, 2011

AN EDIBLE DINNER

Well, I did cook dinner last night - Tom and I both survived!  It was a new "low sodium" recipe for marinating pork chops.  I grilled them on the George Foreman instead of outside.  I do believe they were a little over-cooked but OK.  I need to practice on the timing a little more.  Tom ate all of the rice and most of the green beans too. 

He did really well with the rest of his limitations yesterday.  Overall I don't think he ate that much - I'd like to see him improve there.  I received a call from the nutritionist today and she is putting together some more ideas for us.  A home health nurse is coming by the house this afternoon.  That will make me feel a whole lot better.  Seeing Tom every day, I don't notice changes a trained nurse will see.  He'll probably be more willing to answer her list of questions also.  The occupational and physical therapists are back on-board as well so that will help keep Tom busy.

I think he has slept well the past two nights which wasn't always the case even when he was home before.  Hopefully he can keep that up.  It was nice to get a little more sleep myself last night.  I was not in the best of moods when I got home yesterday after work, grocery shopping, and going to the pharmacy.  Finley decided to run out of the gate as I was pulling the car in and I had to chase her around the cul-de-sac (which she thought was a lot of fun).  Thankfully one of my wonderful neighbors saw me and came outside to help.  It was so hot and I was so upset, I was just going to let her go and hope she had enough sense to come home.  Once again I asked myself . . . what were we thinking when we got two puppies?!?!

When I left home this morning, I put a binder on the counter with all the spreadsheets I put together for Tom to log his meals, sodium, protein, liquids, weight, etc.  Having to keep up with that, alone, should make him better in no time!!!

Wednesday, July 13, 2011

HOME!!

Tom was discharged from the hospital yesterday evening and is HOME!  There was lots to do last night to get settled so my apologies for not updating the blog.

There was one trip to the grocery store where it takes forever to look at every label for sodium content and two trips to the pharmacy to pick up RX's.  Tom is going to be eating a lot of english muffins with jelly.  Remember, I'm not the cook at home so this is a real challenge for me.  Tom is on a low sodium diet which in and of itself is not that difficult however, there are certain other foods he cannot eat because they affect his ammonia level - those two together make it a bit tougher.  I have left a message for a nutritionist to get some help. He still has fluid restrictions to help alleviate the swelling.  I know after a while this will be much easier.  Right now it is overwhelming. 

My co-workers are munching on lots of salty snacks I cleaned out last night.  There is also a bag of canned soups (even though they are "low sodium") ready to go to the food bank.  I feel comfortable that Tom will not eat the things he shouldn't but I don't want him to be tempted.  It will be better for me too (after I help eat all of this junk at work).

His follow up appointments have been scheduled and I think (hope) he has everything he needs today while I'm at work.  I woke him up before I left at 6:15 this morning just to make it feel like he was still in the hospital - but at least I didn't turn on the bright lights or stick a needle in his arm (although I can do that if necessary).  I simply reminded him to take his medicine and write down everything he eats and what's in it.  I have lists all over the house of what meds to take at what time, charts for writing down sodium and protein content, and because he needs to weigh himself every day, a place to write that down too!  It's all kind of funny when you take away the importance of it.  He'll probably get a few phone calls from me today too.

The puppies were quite happy to have him home and couldn't wait to snuggle between us when we finally got to bed about midnight last night. 

Please continue to pray for Tom's complete healing.  I wouldn't mind if you prayed for my cooking abilities also.  Our family and friends have been so encouraging and helpful.  We draw our strength from your support and especially from The Almighty God!

Tuesday, July 12, 2011

ALL DONE

The procedure this morning took about 30 minutes.  I realize it's been over for a while but other duties required my attention.

In a nutshell, they found very little - which is a good.  There is a small hiatal hernia and a slight narrowing of the esophagus.  The doctor recommended Gaviscon for the reflux. 

We're hoping Tom can go home today but will need to wait until the doctors can talk together.  There is still some swelling in Tom's legs and they are treating that the same, with diuretics and limited fluid intake.  He will go home with medicine to help control the ammonia level in his system and some antibiotics to make sure this infection is GONE!  Tom said yesterday that when one of the techs we know and love came in and saw him again, she told him she was surprised he didn't have this infection earlier because of all of the antibiotics he has received.  The gastro doc thinks Tom might have had it for longer than just this visit and that it was just masked by other things, so who knows?!?!

Tom will continue his very low salt diet and I'm thinking those "ammonia foods" will have to go as well  - so I'll be making a trip to the food bank.

I'll post later with updates.

Monday, July 11, 2011

FIRST POST TODAY?

I think this is my first post today - sorry to those who have been checking and waiting.  The gastro doc came in to see Tom before I got here this morning at 7!  He said he wasn't going to do any procedures, that Tom would be on antibiotics for another 2 weeks and he was pretty much ready to send Tom home but would talk to the PCP in charge first.

Then, after I left for work, the kidney doctor came in and asked Tom what he was doing in the hospital again?  His kidneys looked great and his color was better than it's been.  Tom told him he thought they found the reason for the infection and he hoped all of his docs would get together today and determine what the next step should be.

Apparently they did just that and have decided that Tom will have a "procedure" tomorrow after all.  They are going to put a scope down his throat, into his stomach and look for bleeding, ulcers, polyps or whatever.  Tom was told the procedure will be at 7 a.m.  This is good news in that we will know what, if anything, is going on from that standpoint.  Please say an extra prayer that this procedure will go smoothly and that whatever they find is easily treatable.

I received a call shortly after I got to work telling me they were moving Tom to another room.  He has been on the surgery floor and they had 14 surgeries today with no beds.  So, we're back on the sixth floor.  I was originally told a room number that was in the cardiac wing but we're actually back in the same section where we've spent most of our hospital time.  Fortunately we know most of the nurses & techs here.

Out Tom's window is a nice Serenity Garden that we didn't know existed.  We requested a wheel chair and went to check it out.  They originally were not going to let us go since there is a "heat emergency" in effect -  it is so hot and humid here - but we were able to go out for a while anyway.  I about melted but it felt good to Tom.  He then had a nice shower.  This room is a little bit bigger and the bathroom is actually smaller but the layout is much better overall.

I'll be hanging out here in the morning so as soon as I have some info, I'll post it. 

Sunday, July 10, 2011

Leaving soon?

Another doc came in while I was at home today and told Tom he was ready to send him home.  We will need to see what the gastro doc says tomorrow though.  I still believe they will want to do another test or two.  Tom has said he doesn't want to be sent home and then told to come back - I agree.  The nurse came in and removed Tom's telemetry so that is a good sign.  His "going home" clothes are in the closet so we can make a quick exit when the time comes.

We took a trip outside today - I think it was hotter/muggier here than it has been all summer.  I was miserable but Tom was comfortable.  Fortunately we did not stay out but about 20 minutes.  Tom slept most of the time I was home so he'll probably be awake late tonight.

There's not much more to report.  I'll be back on the breakfast - lunch - dinner visitation program tomorrow and hope to catch the docs.  Tom will be able to handle it on his own though.

A pleasant evening to all.

9

Nine is Tom's WBC today!  I asked about the ammonia level and the on-call PCP said he usually checks it once and then prefers to evaluate the patient to determine how things are going since the ammonia level can fluctuate so much.  Tom is more alert so the doc is happy about that.  He thinks Tom will get to go home early this week (assuming the gastro doc concurs).  Tom still has some fluid retention which is what they are working to address with medication, low sodium diet and restriction of fluids.  Tom is not doing as well with the restricted fluids.  Just like anything else, tell someone they can't have something and they want it all the time!  I wonder . . . why couldn't he drink this much when he was at home???

We both slept pretty good last night.  Tom even got up once on his own so I know he can do it and I feel better about not staying tonight.  I think he tends to get better without me here doing stuff for him anyway.  He's napping on and off now so I'm going to head home to do a few things and then come back and stay until this evening.  My neighbors are once again graciously coming over to entertain the puppies - I can't even begin to thank them enough.

Hopefully I'll be back in time to meet with the other docs.  I'll report again later.

Saturday, July 9, 2011

EVENING UPDATE

Well, Tom is even better this evening.  He received 2 units of blood today which helped his color among other things.  He is more alert - of course his loyal friend Dave came by and that helps a LOT!  We went for a pre-dinner walk "around the hospital hallway block" so he's had a little exercise.  Since I did not make my class at the Y this morning, I have searched and found a non-creepy stairway.  That's the good news.  The bad news (sort of) is that Tom is on the 8th floor.  Other than when I am hauling stuff in or out, I have taken the stairs.  The only place I really go is the cafeteria which is on the first floor but at least it's something!!

The on-call PCP seems to think that the infection source is the bacteria that they found in the tests.  It is a bacteria that can develop when a mass dose of antibiotics has been given and killed all of the good bacteria.  Often it does not show up for several weeks after the meds are received.  So, he's thinking that all of the antibiotics Tom received in the second hospital stay might have killed enough good bacteria to allow this bad bacteria to grow.  They have stopped all IV antibiotics.  I asked the doc how we would know when the infection was gone - he said it would go away in a couple of weeks.  I asked him if Tom had to stay in the hospital that long, he said no.  I kind of think he will be here at least until mid-week.  His gastro doc is not on-call this weekend so we'll see what his thoughts are on Monday.  If there are tests he wants to run, I would imagine those could be done while Tom is here.  Of course, then we need to wait on the results of those tests and then wait for the doctor to decide treatment and then wait on that treatment . . . results . . . on and on it goes.  Tom is a little swollen so he received one dose of lasix today.  He is on a low sodium diet too.  This is the third "diet" he has been on.  We have no idea what he can/should eat and what he can't.  I need to be sure to ask the docs what his diet should be when we leave - I want to be sure we're doing everything we can to address Tom's "delicate condition". 

I went home for a little while today to get some laundry done and play with the puppies.  I will stay at home tomorrow night so will be back and forth tomorrow.  Tom gets "home sheets" but we only have one twin set so I need to wash those and bring them back.  He does not like hospital sheets.  He also has home blankets, home pillows, home cups and we provide our own soda.  I even brought him some fruit  but that's because I didn't want to throw it away.  It's pretty bad when you are pre-packed for a hospital stay.

I don't know that we'll get much new info tomorrow.  They don't run many lab tests over the weekend so depending on what the doc orders, we may just "stay the course".

Hope you all have a wonderful Saturday night and a blessed Sunday!

MORE IMPROVEMENT

Tom and I both had a much quieter night last night.  He was wide awake a good part of it which was frustrating for him so he watched TV, read some email and played on his iPad.  He's sleeping now though so he's making up for it!  The on-call gastro doc has been by this morning.  Tom's WBC is down to 14 but his red blood cell count is too low - it's at 23 and they like it to be around 30.  So he will be getting some blood soon.  The doc thinks Tom is a little bit swollen so he's told him to watch his fluid intake.  Here I have been so happy that Tom has had nearly 2 liters of liquid in the past 18 hours or so and now it may be too much.  I'll tell you this, getting the perfect balance is quite a challenge.  Tom ate a good breakfast this morning - I'm really happy about that too - hope they don't shoot it down!

Tom is much more alert and himself.  I think the doc wants to see some more improvement though.  His blood pressure has crept up a little in the past day which has Tom worried.  I told him it is not that high (confirmed by the doctor) and they are checking it every 4 hours so it is closely monitored.  He still has some abdominal pain but it doesn't seem to be as bad.

Apparently he received an email last night from someone inquiring about his condition.  Tom asked me if I was updating the "blog-thing"!?!?!  I was almost speechless.  This was the first time he has mentioned the blog to me.  (If you are new to this blog, writing to the free world about Tom's condition is something I thought might lead to the end of our marriage or my life!)  I'm happy that Tom has at least accepted it with some grace although I don't think he's read it.  I told him I was indeed updating the blog and asked him if he would like to read it, but he declined.  I guess I can stop cringing every time someone mentions "the blog" now.

The nurse Tom had on his first day back here is the wife of someone I work with - what a blessing.  She is his nurse again today so I know he is in good hands.  I am hoping he will be OK with letting me go home for a little while since I need to do some laundry and stuff.  I don't know if I'll be staying tonight or not.  I'd love to go home but if I can make arrangements to stay tonight, it will be easier for me to convince him to let me go home tomorrow night!  I keep telling him one day at a time - I need to remind myself of that too.

I'll probably post again later.  Thank you family and friends for praying for Tom.  We pray daily for your health and safety.

Friday, July 8, 2011

R3D2 (That's Round 3, Day 2)

Both the acting PCP and the gastroenterologist have been by today.  The good news is Tom's white blood cell count is down considerably and his ammonia level is down as well.  They still haven't determined the exact source of the infection so although it is frustrating, at least he is getting better.  The docs don't seem to think the hernia (a factor in the first hospital stay) is the cause.  They did find a bacterial infection in one of the tests so Tom's picked up something from somewhere (kinda strange since he hasn't been that many places lately).  He is now off the IV fluids because he is no longer dehydrated.  He's still getting some antibiotics via IV.  It seems every medication he is taking has a side effect of "extreme tiredness".  At times, Tom can hardly keep his eyes open.  But he probably needs the rest anyway.  We have had lots of interruptions today so his rest has not been continuous. 

For your reading pleasure, here is the medical lesson for today:  Dating back to Tom's original sepsis infection with "multi-organ failure", the kidneys are functioning normally now but the liver rebound is a much, much slower process.  The gastro doc seems to be leaning toward this as a major contributor to the trips to the hospital.  The liver does a LOT of things (our favorite CCU nurse told me the phrase should be "I love you with all my liver" because it does more than the heart).  If all those things don't/can't get done, many other functions are affected - they don't normally raise the WBC but who knows?  One of the things the liver is responsible for is removing toxins in the blood.  Since Tom's liver is not 100%, these toxins are building up in his system.  During his hospital stays he received medications that helped remove these toxins and he got better.  He may have to start a maintenance program of these meds.  The nutritionist came by with information about some foods that are higher in toxins (i.e. ammonia) - naturally it's all the "good stuff" and stuff Tom has been eating when he does eat (and stuff I know how to cook - open can & heat).  So, that info will be helpful going forward in keeping Tom out of here. The liver is the one organ that can regenerate itself too.  Although it's not probable that Tom's will ever be completely 100%, it can improve over time! 

While I'm thinking about it, I've probably jumped up on this soapbox before but I'll do it again . . . please consider being an organ donor.  There are so many people who can be helped from one donor!  I'm pretty sure our Heavenly bodies will not need them.

That leaves the kidney doctor as the one we have yet to see today.  Since Tom's kidney function is good, I'm not as anxious for that report (which is just the opposite of the last hospital trip).  

On tap for this evening will be a shower for Tom and more Discovery Channel.  I am really tired of watching Deadliest Catch and Orange County Choppers.  At home Tom got hooked on the DIY network - I like that much better but it's not available here (can't seem to get him hooked on HGTV - which is available).  I think I'll grab a movie from home.

See, your prayers are working!  THANK YOU!!!

Thursday, July 7, 2011

ROUND THREE - BACK IN HOSPITAL

Tom has been lethargic for the past few days and has not been eating or drinking hardly at all because he is so tired.  Last night he seemed a bit weaker and a little confused so I forced him back to the emergency room around midnight.  We were in the ER until 8 am and then moved to a regular room.  I think we're going to be here for a few days.

Although Tom had a good report from his primary care physician last week, he was dehydrated from the diuretic he had been on.  I think we were all hoping Tom would recover on his own but he just couldn't eat and drink enough and is even more dehydrated.  He also has an infection - source/cause unknown at this point.  So he's receiving IV fluids and antibiotics now.  Hopefully the kidneys will not get upset (this is what usually keeps him in the hospital for so long).  He will be seeing a gastroenterologist (he has an office appointment scheduled for next week so we'll just take care of that while he is here).  His PCP seems to think the infection is a urinary tract infection or something like that.  I was concerned that it had something to do with our original hospital adventure but he said if it was hernia related, his kidney numbers would be out of whack - and they are normal. 

So, the vampires have come to take lots of blood and they are running lots of tests.  At the moment, Tom just doesn't feel good.  Hopefully the fluids will help.

We once again ask for your prayers.  Thank you!