Wed. 3/25

We have been at home for a few days and everything is going great!
Tim is re-cooping and doing pretty good. I'm sure he will be ready to go fishing in a few months!
The dogs are glad to have their fearless leader home and snuggle up to Tim every opportunity they get!
I went back to work on Monday. Somebody has to keep the insurance rolling!
I'm afraid to say we are back to normal. I don't really know what that is......and I'm afraid to say all is fine.....before a doctor gets to charge their final fee and tell us. But I will whisper that we are getting there! It is good to be home - and hopefully on the mend. I'm afraid there are still many hoops to jump through - and every time we think we are done.....another hurdle seems to rise in front of us! This time I'm hoping the hurdles are done - and Tim can re-coop and start to enjoy his retirement!

Today is THE DAY!!

It's Saturday morning - 3/21/09. We've been holding our breath all night - they took labs at 4 am - the nurse sent them out STAT - and by 7am.....she gave me the news that Tim's blood thinning levels were up. It is now official - we will be released sometime this morning - and be on our way home!!! Now, we just have to WAIT for everything to be put together! But I can start packing and making trips to the car!
Thank you to everyone that has been praying, reading this trivia everyday - and overall just letting us know that we have such great friends and following! We appreciate every one of you and everything all have done for us. We cannot thank you enough!
Tim still has lots of mending to do. He has 6 weeks of IV antibiotics to get. In 6 weeks we will make a return trip to Cleveland to hopefully have the antibiotics "turned off"; to have his clot screen removed; to have his pacemaker checked (that will be monitored in Lafayette for ever); and whatever else they decide he must do!
Tim is still fairly hoarse - so won't be ready to talk on the phone - but we will look forward to seeing everyone soon.

3/20

Another day - another page for insurance billing!
We are just hanging out! I think our insurance must be too good - why let us go?? Several of the doctor's fees have been posted to insurance....wow!! The surgeon's fee is about 4x what it is in Lafayette....but worth it!! Some of the other charges make you wonder. They barely stick their head in the door.....
Tim's count - i'm not even sure what they are counting anymore - isn't up or down or sideways or backwards - or however it's supposed to be yet. We are starting to hear some talk in the hallway that we may be able to get out tomorrow. Other jab is we're staying on into next week!
I took the car and got out a little this afternoon. Overall, there isn't anything I want - so it's hard to pick a place to go! I told Tim my mission was to go buy a new car.....but couldn't find a dealership where I wanted to stop. Tim's car has decided to act up - and it's a little unsettling. It will kind of jump forward (when you are sitting at a stop). Then it will shake and rattle and shut off. I'm hoping it will head for home with no problems. I think there must be some transmission problem. I think it's time to trade it off. Tim likes his car...so we'll see. I'm tempted to park it on the street tonight and see if there is anything left in the morning!
Tim is currently sleeping through some of the March madness games.
Thanks to all who are still reading.....hoping this story ends soon!!

Thursday, 3/19

It's been 1 week since surgery. Tim is doing fine. He is up and about. There is a roof top lounge here - where you can go see the view of the city - we've been up there a couple of times. They will have music at noon - sometimes; and massages on MWF in the afternoon. We've not been up there at those times. May try tomorrow!!
Over all we are just here - but now that March madness has begun.....Tim's in 7th heaven! I don't know how long the NCAA games last - but I can see our stay extended - again!! He must be feeling better - he's looking for ways to get pizza, wings and beer delivered to the room. I can see the nursing staff hanging out in our room! Guess we'll call that "personalized care - pass the wings!"
Of course I'm looking for anything to giggle about - the nurses start in about 4am - drawing blood; then bringing in meds and something to drink; then it's breakfast - and coffee, etc.; then he must get all hooked up with his IV's for antibiotics - and then....a shot of lasik! Up to this point, Tim has been in bed - enjoying all the attention. The shot of lasik goes to work quite quickly - and he is working madly to scramble out of bed and into the bathroom. This happens regularly every morning like clock-work!
Tim doesn't have a lot of hair - but needs a haircut. I've thought about looking for some surgical scissors to trim him up. I'm a little hesitant as I'm not real good with cutting hair! Probably by the time I'm done - the doctor is liable to walk in and wonder what is wrong with him - and make us stay another 2 weeks - while the hair has a chance to grow back out!
I had plans to get out today - and am leery about going in the afternoon - when traffic is more busy with school getting out and everyone getting off work. I'm also getting into a lazy pattern - but hope I can get out in the morning - and tour around Cleveland a little and be back by mid-afternoon - for a nap!!
Purdue is playing - so will stop and watch the game!

Wednesday

Tim came back about 10:30 last night - with a PIC line in his left arm - so he could have eaten during the day. He ate the dinner I had saved for him and some that the nurses put back. He ate a HUGE breakfast this morning. We've both cleaned up - went to the Roof top for a while - they have started his blood thinning therapy and supposedly has to stay on the floor. Of course it was about 11am...and a group was setting up to play music starting at noon. We promised not to stay too long. The group was a blues group with a baritone singer. I may slip back up and use the phone so Tim can hear. The nurse is attempting to set up his "stuff" and seems quite confused....so I'm staying put for a while to watch! What a time!
We both need hair cuts. I may attempt to drive somewhere later and see if I can find a place. I may see if I can get some sissors and do Tim's. He could probably fit in the blues group upstairs with his shaggy do! (He and his hair are the wrong color.....but with his raspy voice - they might not notice! haha).
Not much to do now - except "hang out". This seems like a "bad" place to hang out - there are sick people here.....and I surely don't want to catch something "new".

Tuesday Night

It's 9:30 pm.....Tim finally went to have his catheter port put in about 9pm. Poor guy hasn't eaten or had anything to drink in about 24 hours. I have some of my corned beef and cabbage dinner left for him when he gets back. I also promised him a McFlurry - so if McD's is still open downstairs - I'll have to get him one!!
He's been doing fine - and I have been counting the hours till we could get out of here.
The hemo/blood doctors came in this evening and dropped their bomb shell. They want to get Tim started on blood thinner therapy.....and once they can get it started, they will want him here for at least 5 days. I'm already going nuts - as I'm sure Tim is - and this is overwhelming to me at the moment. I'll cross my fingers that this place where time stands stiller than a mannequin - will move a bit faster. (I think of better things to write in the middle of the night.....guess I should get up and write then....it doesn't seem to matter whether its day or night here).
Megan's parents came by this evening to visit! It was really wonderful having someone here. I'm sure my return company wasn't great - I'm in a bummed mood about going home - but someone NOT dressed in hospital garb was a fantastic site! Thanks for the company and dinner! It was really appreciated! (For those reading - Megan is Scott's girlfriend!)
Signing off for another night!

All about me!

Thought I would write a short insert about me! Wow! This will be very unexciting!
I'm living and vacationing in the CCH hotel. It is a nice place - but not very high on my recommendations! I can get clean towels and sheets and blankets - but otherwise for the most part ignored! (And that is expected!) I don't think there is any sound proofing - you can hear everything in the halls, doors opening/closing, anyone walking by, etc. Starting about 3:30 am the night staff comes alive and there is always someone in the room. At least I do have the luxury to turn over, cover my head and attempt to go back to sleep. I'm not the one being poked for blood or vitals taken to see if I'm still alive. The TV works ok - but not lots on! Overall, it's boring and tiring sitting here all day. Probably why the blog entries get longer and more boring the longer that we are here.
I would love to get out and walk around the area - but I don't want to miss a doctor coming by. I have lots of questions for them - and if they come in when I'm not here - and I ask Tim what was said - I get the teenager answer....."I don't know". So, I stay to catch them.
Last night, I did get out and went to Wal-Mart. It was nice to get out and wander around the store and just be away! It was also an ethnic trip! I was looking for some hair gel - and found shelves of items I'm not used to seeing. I was looking for something that would help me put some curl into my hair - and all I could find were products that would help relax the curl in my hair! I need a hair cut - and could probably get one and come back with some kinky waves and beads. Definitely a culture shock here! We are starting to hear talk of being dismissed.....I'm not holding my breath yet......but I am getting excited about the prospect of breaking out of here!!
I am haning in there ok. Megan brought me a care pack - and I have lots of yogurt, fresh fruit, crackers, muffins, G2 fruit drink, magazines and puzzles to keep me entertained! It's definitely a luxury. I'm starving for a steak - and can't wait till we are out! Everyone is welcome to come eat a steak dinner with us!! See you there!!

Tuesday Morning

Here we are to another tuesday morning in the CCH hotel! For all the surgeons and doctors have on the ball, I'm starting to wonder about the rest of the place. There are so many nurses, techs, aides, transporters, and other staff - no one knows what the other is doing.
Tim rested really good last night. He had been kept from food and drink all day to be ready for the pacemaker procedure. This morning the night nurse came in and wanted to know why he didn't have to "go" and said he should have been drinking all night.....he had better start drinking some water (they never bring you any) so he could/would have output. She finally brought him a couple of little bottles of water - which Tim drank - and "went" without any problems. Then transport came in and took him to have his Hohn catheter put in. About an hour later his nurse came looking for him - and said he was to have no food or water today for his procedure. I said they had already gone.......about 10 minutes later they brought him back.....he had gone for a pacemaker follow-up. (He has to wait all day for the other procedure - no food or water all day again). Something was not correct with his pacer - and they will have to decide if they can fix it externally or decide if they will have to re-open his pacer area and fix the lead wires internally. Tim says that surgery and placement hurts worse than the open heart. He is very sore and tender in the shoulder area and is dreading if they decide to open it back up.

Monday Night

Tim went about 5pm for his pacemaker. They brought him back about 8 pm. He said they didn't put him out - he could feel everything, especially the stitches. He is supposed to sleep sitting up and hopefully, he will be better tomorrow. They willl "check" the pacer tomorrow and make sure all is working fine. Since they couldn't get an IV in his arm - he now has one in his neck. It looks painful - I'm hoping it looks worse than it feels. He won't get a PIC - but something called a Hohn line tomorrow. Always something new!
He is sleeping..... and after a few more TV shows....I'll try to sleep some, too!
Good Night!

Monday afternoon

It is about 2:30 Monday afternoon. We don't know alot and we haven't seen too much today.
It's like pre-surgery you see someone every 15 or so minutes. After surgery you are lucky to see a doctor every 15 days (or so it feels).
Tim has not eaten today - in hopes of getting the pacemaker this afternoon. Of course they do not bring in his meal trays...... but the ones that pick up the trays still come looking for them and think you are hiding this food for later under your mattress. Then the nurse's aid comes in and wants to know how much you were able to eat and drink. Tim has been cautioned that he needs to drink as much as possible so he can flush his system and hydrate his veins for "pokes". Hmmmm, he's on a NO eat or drink order since midnight. Maybe it's good we don't see many as this is frustrating! Tim made about 3 laps around the ward this morning - and has now been napping all afternoon. He didn't get much sleep last night, so it's good to see him catch a few zzzzz's. The last we heard he is on track to have the pacemaker put in about 5 this evening.
Will catch up again then! Keep your fingers crossed!

Monday morning

Well, here it is a bright new week! We are getting along......nothing new or exciting is happening.
Tim is waiting to hear if he is on the pacemaker list for today. He is not allowed to eat - unless they can't get him scheduled in. It is about 11am and we should hear by noon if he gets lunch or not. If they bring him food, it means we do this again tomorrow. I don't know why I say"we" I ate a delicious grapefruit and yogurt this morning!
Tim is up and around pretty good today. He has made a couple of laps around the block and then rehab came by and took him for another lap. He is attached to a pole - so that always has to go rolling with him. As soon as they do the pacemaker he can walk more freely and, I hope, get in line for being discharged a few days later.
He is always a challenge. Since he has this clot on the left arm - they will put the pacemaker on the right side. (Last time it was in his left shoulder area). They also want to put in a PIC line and it can't go on the left and supposedly it can't go on the same side as the pacemaker. I think they will mutate a new arm so they have somewhere else to poke and put things. His right arm has been poked so many times they couldn't even hit a simple place for blood this morning.
They are starting to look at my arms as surrogates. YIKES!!
We don't see doctors on the weekends as they have the weekend off - and now that surgery is done, they don't come around as much. We (I) have lots of questions - and not sure where they are.
Hope to update a little after lunch!

Sunday afternoon

It's Sunday and the day is moving along slowly. Not much happens here on the weekend so it is just a fairly peaceful day. Tim was slow to get up - but on the other hand there is no reason to rush! He's eaten a pretty good breakfast and lunch - and now watching the Purdue/Ohio State Game. Once it's over, I imagine it will be dinner time.
They have slowly removed all his hook ups. He is off oxygen. I had him take a walk down the hall and the nurse came in to check him when we got back. His oxygen level was 80! That's much too low! While she was in a panic and getting out his oxygen hook-up - you could hear Tim inhale - and his level immediately went to 99. We all started laughing - not sure if he was holding his breath on purpose or what. Once he started breathing - he was fine! Gotta always remind these baritones to do something. We told Tim he has to remember to breathe!!
The only wires Tim has left are the pacer wires. He's still pacing to his own beat......and not needing any prodding.....so while I kind of hope they don't do a pacemaker - I think it is still on the list. The pace maker is always a good back up incase it's needed - but on the other hand, he doesn't need any more foreign things in his body to attract infection.
The infectious disease doctor is still stumped what caused this whole mess. Tim does not have any infection in his body - nor could they find anything positive when we got here a week ago. They can not simulate anything in the lab - so all is much a mystery. Could be an episode for "House". I have some ideas and will ask ID. I wonder if this "cavity" they found for infection is from the last time and all the antibiotics - and whatever invaded this time was just some kind of flu/fluke. I suppose my idea is as good as anything they can come up with.
They cannot find any places left for an IV - and will send him for a PIC line tomorrow. They should have done that a few days ago. I asked when we came in and the answer was no....don't think they could have it before surgery...... at least if they put in the pic they don't have to come put in an IV every few days - and can quit poking for blood. His arms are swollen and pretty much black and blue from brusing. Each IV poke is taking about 3 times to find a spot. OUCH!!
I have nothing more for today! Our get well wishes go out to Bob. Get well, stay well and no more strokes!!!

Saturday night

This has been an ok day! Tim has attempted to rest a lot of the day, although it has not been easy. The nurses, doctor or someone comes in every few hours. Overall probably a good thing, hate to think of a patient that was never looked in on! The nurses have removed his stomach tubes and the catheter. (Not sure I'm spelling that right). He is not "going" enough and that is a concern. He's not overly mobile yet - but I'll be getting him to move around more tomorrow.
The nurse has just come in to check on him (it's about 10:30 pm) and is going to get him out of bed and see if she can jiggle some liquids out of him. Seems like there should be room for a lot funnies here..... all there is, is a lot of dust! I guess the "picture" is funny. He's standing there with a plastic urinal to catch what comes out - while drinking some juice. If it were just some free standing plumbing - he could pour it in and catch it on the way out. We need a Betsy Wetsy doll to show him the trick! Wonder if we could take up a collection for him!
I will stay in the room tonight. I hope we will both get some sleep and tomorrow will be a better day! Overall, I don't think he will have much doctor traffic till Monday. Then it will be back to "business" and see what equipment and tests he'll have to jump through to get out of here!
Good night to all! Thanks again for your comments and emails. We do read both!

Saturday afternoon

First off, I apologize for not adding any blog updates yesteray. Everything has been going ok.....the motel does not have any wireless capabilites and we checked out of the room and put everything including the laptop in the car. Tim spent the night in ICU - they pulled his breathing tube about 7:30am on Friday. He was tired and raspy all day in the ICU. The plan was to move him to a regular room about 4 or 5 in the evening. Before they could move him, they generally pull most of the tubes and IV's. During surgery they put in a main IV port into his neck. When they went to pull it - it was stuck! They pulled and pulled and it would not come out. They called the surgeon - who came in to check. Fear was that the tube was being held in place by a stitch.....and it would take reopening the chest to undo the stitch - or possibly finding the area and cutting in to the upper chest area to release it. They got the x-rays from surgery and started looking at everything. After all it was Friday the 13th and something had to go wrong......I think they have 1 in about every several 1000 that have this problem. The nurse commented that the surgeon won't tell his secret, but he eventually placed his hand someplace on Tim's chest and pushed - and pulled the tube in the neck at the same time - and the tube magically released and came out! Phew!! That created about an hour or so set back in moving him to his room - they wanted to watch for bleeding and let Tim relax. About 9pm Friday evening, Tim was finally moved to his "step=down" room from ICU. He will stay in this room until he is released to go home. We left about 10:30 to get some dinner and go back to a motel to sleep. Saturday morning, we got up and checked out of the motel again. Mike decided he would head on home today and Matt and Kate will leave later this evening. I will move back into the hospital room. Scott's girlfriend, Megan, is from aabout 40 minutes from Cleveland - so they went to spend the night and some time with her parents.
Tim ate a pretty good breakfast and lunch. He is terribly tired - and needs some sleep. We all know that doesn't happen in a hospital! The nurses are currently attempting to find a place on his right arm for an IV. He has nothing in that arm they can find and he as been stuck so many times it is horrible! They don't want to use the left arm due to the clot. That is the only arm with decent veins - and now it is off limits... Tim still has his catheter and chest tube - so he's not very mobile, yet. Hopefully, more later!..................................

Surgery is over

Surgery is over! We met with the surgeon and all went just fine. He said Tim didn't act up at all - he behaved himself the whole time! That's not me - that was the surgeon's comment. He is one good guy! He was done about 1:30 - then I'm sure there is some of the final stuff like closing him up and getting him over to ICU. They say to allow at least 2 hours before we attempt to go up for a peak. Now we have to get him healed. They removed his pace maker and will wait about a week before they put a new one in. The surgeon said he has his own rhythm - but since he's a baritone - he'll probably need another pacemaker put in to keep him in line! (His quartet willl get that one!) We still have a long road to go. There was some infection that caused this in the first place - so he will be on antibiotics for a while.
I'll send out a finished note this evening! Thank you to everyone for your thoughts, prayers, emails, comments! It's wonderful to know we have such a great support group!

Surgery day continues

We left Tim about 6:15 this morning at the surgery door.
We were told that the first incision was made about 9:21 am.
We've just been buzzed at 12:10pm that "the major portion of surgery is underway."
Our next contact will be from the surgeon letting us know how everything went. We probably won't hear anything for several hours. At least they have started without any complications!
No news is always good news!
Next update will be this afternoon after I have talked with the surgeon!
Stay tuned...........................

Thursday, 3/12 - SURGERY!!

It is Early Thursday morning. Tim is having his surgery today. We were told to be to his room by 6 am - we were there about 5:30. Mike, Scott, Matt and Kate are here with me. Matt and Kate got here about 5:15am. Aaron is with us via phone!!
The bed guy came by at 6:15 to take Tim to surgery so we were glad we had come in early. Tim is in good spirits - and while not eager to have surgery - he's ready to get it going and have it over with. We all know the ICU and time following surgery is part of the hardest!
Now, we are in the lounge (at 6:30)- and the LONG wait begins. We have a beeper to keep us in touch. We probably won't hear anything till about noon or so.
Check back later for updates as we hear anything!
Keep the prayers going!

Wednesday afternoon, 3/11

My how the days are passing so slowly! This is definitely the place to be when you want to feel like time stands still!
We are definitely on the "hurry up and wait" list at the hospital. We - or really Tim - is on the wait list to get his screen umbrella inserted for clots. One doctor called it a filter,one a screen and another called it an umbrella - without fabric. When I imagine just the ribs of an umbrella, I can't see it catching much.....so I like the thought of a "screen" better! He was on the list for 6am - then 3 pm and we haven't seen anyone come yet....it's 3:30. So, if anyone shows by 8:30 tonight - I will be surprised. In the meantime - it's no food for the process.....then they said he could eat and brought his lunch tray. So, the hungry pup ate! Then one of the nurses commented as long as he kept it to soup, he was fine......(she ordered his lunch). But, they are on the ball here compared to other places, so not complaining!
Surgery is off......they kind of hang their heads when Thursday is asked, and indicate they are much more hopefull for Friday! So, we figure Monday.....but we are told it will definitely be before the weekend! I'm running out of days in this week......perhaps it is on the schedule for the 2nd Tuesday of this week. Actually, I think a lot of work gets processed on that Tuesday! We'll see. Of course the blood clot is a huge factor - and I'd just as soon they get that screen in place!
Mike asked if we weren't here - and didn't know about it - and Tim was just out running and jumping - (like a fairy?? or leaping dancer??) could he break a clot loose without knowing it. I'm not sure we ever got a straight answer on that one! Probably obvious why we didn't!
More - after midnight - maybe we'll be screening more by then!!

Golly, What next???

Just as everything is already bad - and you think all the options have been worked through - another pitfall is thrown at you.
The results of the vascular check is in - and Tim failed. He just can't pass a test! He keeps saying he should have paid more attention in High School .... and on top of that he keeps singing, "If I only had a brain!" If you remember - the brain scan came up empty - and the only test he passed. Tim figures it's because there is nothing up there!
He has a blood clot in the right leg - pretty much from the top of the thigh - all the way down. This is from the Chemo...... Any piece or part can break off - and go to the lung....and once there it's all over. SO, they will treat with blood thinners and have a screen put in to catch any pieces that may break off. The vascular team's preference is to wait 3 months for surgery - but that's not a realistic option. They are ok with this tactic and figure odds are good with the "screen". BUT, Tim never lets any option go that easily. He also has a blood clot in the upper left arm - or near the arm pit or somewhere in that area. They cannot screen for that one - and cannot guage if it's "new" or "old". So, that clot poses the most problem. They figure a clot breaking off from the leg is high - but will be caught by the screen. The percentage of something breaking off from the one in the arm is lower - but if it does, it cannot be caught. Surgery will not occur until most likely on Thursday - possibly on Friday......so until then, they will treat Tim with blood thinners and hope however long they can get some in him will be helpful.
They will probably put this screen in sometime tomorrow.
We are doing our best to laugh when we can - to help make some giggles - to lighten the mood where we can in all this dismal stuff. This surgery keeps getting tougher and tougher - but we are still confident in the surgeon and this clinic. We are probably going to have ask everyone double and triple up on their prayers!
This afternoon has already lasted about 17 hours, but it's only 4:30. I'm not sure I can take any more "news" but as always - I'll update when or if something comes up!
I also wanted to add that I do read all your emails - and often read them to Tim. Thanks for your support and well wishes!

Tuesday Morning

Surgery has been scheduled for noon or so today - depending on when the surgeon finishes with his first patient of the morning.
Tim went for vascular testing this morning. I thought they said mascular - and knew that would be a bust. He doesn't have any muscles left after all the chemo. He left the room about 9 - and by 11 I was starting to worry. I wondered if they have taken him directly to surgery. I checked with some nurses and he was MIA. Eventually, he was brought back to the room. The vascular check didn't go well, they found a clot in the leg and something in the upper chest or arm or somewhere. The head of the vascular team wants surgery postponed 7 to 10 days or more.....up to 6 months. (That's not going to happen). The surgeon wants to proceed - but he's in surgery - so will have to wait until he's out and all is assessed and re-assessed. What a roller coaster! We surely don't want any clots moving around - and surely don't want to wait a week or more! GADS! He talked about a "filter" in the stomach area - I'm guessing that would catch any clots that might come loose.
At this point we are back to waiting........I'll update when anything is decided.

Monday Night

It's been a long day! After many tests, cancelled tests, more tests scheduled for the next several days........Tim's surgery is scheduled for tomorrow afternoon. WOW!
I don't know what made the last minute change - I imagine the surgeon had an opening.
They have checked every possible place on Tim's body - inside and out! Due to the cancer and chemo, his bone marrow is soft and his platlettes and red blood is low. They will be boosting that during and after surgery. A little while ago, they took Tim for a brain scan. The hospital had found an exta one and they were trying to locate the owner! Since Tim has been so dopey, they figured he had lost his or didn't have one. Actually, they were looking for pockets of infection - and he is fine!
Overall, Tim seems a 100% improved from Friday when we left home. He has energy - he has been up and down the hall, he's talking everyone's head off, he's hungry - and eating everything he can fine. He has raided the patient fridge several times this evening. He has color. Several of the nurses have questioned the need for surgery! He does need it - quickly - but this turn around is amazing. I hope he comes out of surgery feeling this good - obviously within in time!
It's hard to face the upcoming rehab - knowing what he will have to go through! Hopefully, by the first of May he will be ready to fish and all the great things spring lets you do! I'm hoping for a better vacation this "cruise line!"
More tomorrow evening after surgery! It will be a long afternoon!

Monday afternoon 3/9/09

Hello! I don't know where to start. We have been in such a hurry up state - and urgency state and now I think we are reduced to bottom man on the totem pole. Getting here during the weekend was actually kind of nice - there was no one else around - so if doctors ordered a test - they came up and got Tim and away he went. Now, it's Monday and back to usual business - and it's very busy! The nurses came in at 6 am to prep Tim and said he would have a heart catherization test (looking for blockage) and a TEE (they go down the esophagus looking at the actual valve). At 9am, they showed up to get Tim and took him to the cath lab. He was back in the room by 11 - and a doctor came in about 11:30 to see him. His TEE is put on hold till tomorrow or Wednesday - as they are busy - I asked about the original urgency - and the nurse commented that the doctors will just say that. The cath scan showed no additional blockage - so at least that little bit is good.
I still don't think they know a lot about what the infection is that has caused the valve to leak. At first it was pneumonia - then it was the flu - and we all had to wear masks. Now, they say he doesn't have any flu - but think it's pneumonia.....and took away the masks. The comment was that they will put him on antibiotics for a week. So, now I'm wondering if we will just be pushed back a week????? I surely hope the surgeon shows up today to unravel some of the mysteries.
Tim is supposed to see the dentist here - but they said in a day or two. Gads! I'd like to get this surgery done and him on the road to recovery so we can head home. Tim is enjoying all the attention and everyone waiting on him hand and foot.... He said this was our cruise ship vacation....we didn't get a balcony - but we do have a great view of downtown Cleveland. I was contesting this cruise - he was getting all the attention, meals brought to him, etc - I get to wait on him and clean up after him.
I slept in the room last night. My bed consists of a flip down piece of plywood with a 2 inch piece of foam. The only thing worse would be just the ply wood - I think! I went to Walmart today and bought a twin size areo bed...hopefully, tonight will be much better! Especially if this cruise ship isn't going to dock for a week or so!
I'll update later - although, I think we are done for the day!

On the road to Cleveland!

As we were leaving the oncologists office, I asked to use the phone and called the cardiologist's office. I had to re-tell the nurse the long story and to get the message to the doctor that we wanted to go to Cleveland. He had said that if that was our decision, he would call them and see what he could arrange. About 15 minutes later, on the way home, I had a phone call from the surgeon's nurse in Cleveland. She said she had a message that we wanted to come back to Cleveland and needed more information. I told her what I knew and preferred and she indicated she needed to have the surgeon call the cardiologist, but we were welcome to come! By the time we got home - another 20 minutes - the local cardiologist was on the phone - and wanted me to get Tim in the car as soon as possible and go to Cleveland - he has talked with them and Cleveland was waiting. I told him I would do it - but I was in such shock - I had to rest - I could not make a 7 to 9 hour drive at that moment - could I get up early and be in Cleveland sometime the next day. He was not happy with that - but said to do what I could and get there as soon as I could. I had called insurance on the way home about a transport - ambulance or helicopter - but they would only take him the to nearest facility - which would be Lafayette. If we wanted transport to Cleveland, it would be at our expense. While I was on the phone with the cardiologist - my phone beeped with another incoming call..... and message. Once he hung up, I listed to the message from the nurse in Cleveland to call her ASAP. I did - she said the surgeon was standing there and wanted to talk with me. She handed him the phone - and he said he had several conversations with the local doctors and he wanted us to come as soon as possible. (It's difficult to get into Cleveland). He said he as willing to help us get there any way he could. He would set up a transport - but understood about the insurance. He said to leave as soon as we were able and if I had any problems ANYWHERE to call him. I said, ok - call the office? - and he said NO, Call me! I will give you my personal cell phone number and you call ME - and I will "Fix" any problems you are having on your journey and make anything I needed " to happen". He said no much happened on the weekends - but he would be looking for us. He said he had already notified Admitting and he would contact ER so no matter where or when we showed up, they would be aware of our arrival. I thanked him and we set off working to depart. I needed to get some laundry done, needed to rest - and set up with Matt to meet him in Goshen - and he would do the final 4 hour drive for me. I was relaxing and feeling better - and we got clothes and the car packed for the journey! We were on the road about 7pm and were in Goshen about 10pm. We meet up with Matt at his in-laws and rested and relaxed a bit more. We decided that the hospital wouldn't be "open" except for the ER and our arrival wouldn't make a lot of difference whether it was at 3am or 6 am. We laid down for a couple of hours and we were on our way about 1:45 am. We pulled up to the Cleveland Clinic about 6:15 and asked where to find Admitting. When we were here last - it was all under construction - and it is now done and very new and pretty. Tim and I went inside and found Admitting - it was closed - but they have a sign to call. As I was reading the sign and about to pick up the phone, a hospitality man walked by - turned around and asked our name. When I said, "Hunley", he said, "Oh!! We have been looking and waiting on your arrival! We are so glad you are here! We were told you would be coming in about 11pm and I've worried all night that something happened! I've been to your room several times just incase you came in and I missed you. Your room is on the 7th floor and it's ready and I will wheel you right up!" I don't think I have ever had a hospital aware of an arrival and so ready for admission! They had even done most of the admitting paperwork and we only needed to show an insurance card and Tim's ID. We were brought to the room and I think I have the story brought up to date!

Results of the tests!

Tim and I had a wonderful lunch at our favorite "old" people's restaurant - Denny's! We chatted about the tests and wondered what we would find out. We were mos relieved about the Echo since the girl didn't seem worried through the test.
Out appointment at the oncologists was set for 1:30. We had lunch, I quickly stopped at a store - and we were just in time for out appointment - signed in about 1:28. Phew!! While we were in the waiting room waiting to be called back......my phone rang. I figured it was one of the boys asking about how the day was going - but the voice on the other end was in Russian or ??? and I knew it was the cardiologist. My heart skipped a beat and I handed the phone to Tim so they could discuss the echo. I caught bits and pieces of "what?" "the valve has to be replaced?" (I punched Tim and said - WHAT VAVLE?) The mytral valve had some minor backwash a few years ago.....but not enough to be worried about at that time - so I thought it was the mytral. Tim looked at me between the Russian words and said "Aortic". I couldn't believe my ears, I think my heart stopped and I thought I was going to faint. I couldn't see Tim at that point so I'm not sure if he had also fainted or evaporated. I did hear Tim mumble "something about Cleveland". He hung up the phone and said we needed to decide if we were going to go back to the hospital in Lafayette and check in or call the cardiologist to pave the road for Ohio. I cannot describe the numbness, how words and speech start sounding really funny and how nothing makes sense at that point. My head hurt beyond description - and a nurse was standing there saying it was time for our appointment. "What appointment?"
Oh, yeah - we were at the oncologists to find out about the CT Scan. I think everyone within the clinic was now aware of the conversation with the cardiologists..... the nurse took us back to the appointment room. Tim said we needed to get the name of the surgeon in Cleveland - that the cardiologist wanted to call him. I couldn't remember my name at that point - let alone remember who Tim was..... I said we would have to go home and I could look back in our records. The nurse was overly helpful and said she could look in the files there if that would help, but since the surgery wasn't done in Lafayette - she didn't think much would be there. As the oxygen returned to my head - we had carried back the surgeon results and they had been scanned into the computer system. She looked and looked and finally she found the file and the name for us! The oncologist was ready to come in - and quickly caught up on what we were just learning. Due to the leakage of the valve, Tim is a walking time bomb, and it could come loose at any time - and then our (my) decision would only be funeral arrangements. The doctors there preferred for Tim to immediately go to the local hospital - and he kept murmuring Cleveland. The oncologist very calmly asked Tim what and why - and said - well, it's obvious - go get in your car and GO to Cleveland. In the midst of all the confusion - I looked at him and asked what the CT showed. He said nothing! Absolutely nothing! Tim was cancer free - the the top half of his body! At last some good news!

More of the beginning

Tim and I went home - to get ready for the CAT scan on Friday - and pondered the "How long have you had a heart murmur?" comment. I knew this was nothing to let go - and talked with Marlene, Aaron's wife, about it. She thought with Tim's history - this was nothing to let slide - and told me I had to make more phone calls. I took a deep breath - and called his cardiologist. I explained to his nurse the cancer history and his shortness of breath and now the murmur comment - and should we schedule an echo? She called the cardiologist - and I had a return phone call in 30 minutes saying an echo was schedule immediately following his CT scan on
Friday. Oh boy! Tim was not excited I had set more tests - but what could he do? He was much too weak to get up and hit me! Thank goodness for some small blessings! :) The girl setting up the echo said since it was a Friday - she didn't want us worrying all weekend - that when they did the echo, if it didn't look right the person would get the cardiologist right then; or the cardiologist would look at the results briefly later and call with any concerns; or if the echo was ok - we would hear from the cardiologists office on Monday or Tuesday - so if we heard nothing all was ok and to enjoy the weekend!
We went for the tests on Friday morning. The CT scan went fine - and we were pushed down the hall for the echo. For the first time I was able to sit and watch. Of course I don't know what I'm watching! I watched the girl take lots of pictures and record lots of sounds. She put some in color and you could see the blue and the red - and I knew from 2 years ago the colors in the different places meant something - but couldn't remember what. Since she didn't seem overly concerned, not did she get up screaming down the hall for a doctor I figured all was ok. Tim had the same feeling and he put his shirt on and we went out for lunch! We had a couple of hours to kill before we went back to the oncologist to give us the results of the CT - which would also show cancer. .........

Oh NO! Not again

Since I've decided to put info back on the "blog" I thought I should try to start at the beginning.

Tim's last chemo treatment was Jan. 26. His chemo treatments went every two weeks for 6 months. He did ok with them - if you can call being sick at the stomach and diarrhea ok. His 11th treatment was rough and he had to wait an extra week to do his 12th treatment. It was done on Jan. 26. He was pretty weak and felt BAD for several weeks. The took out the port that was used for Chemo on Feb. 2. During his treatments he had developed a clot along the port - and they wanted it out as soon as possible.

He was pretty wrung out from the chemo and by mid-February he was not gaining any ground.

He had a GP doctor check up the 23rd of Feb. He noticed that Tim was pretty short of breath and had a tough time getting around in the office. Tim was fairly anemic from the chemo - and that will contribute to shortness of breath and put him on iron pills. As the week went by - Tim got weaker and worse. Lots of coughing; hyperventalation to breathe, overall could not get up to get from the bed to the shower or from the living room to the kitchen. We were told the iron pills would make him feel a little better in a week.....so the following Tuesday I was nagging for Tim to call his doctor. Well, he tried calling the GP on Wednesday and he was gone for the day. They need to outlaw Wednesday golf! I told him to call his oncologist - his health was just not going in the right direction. He attempted to call some number and got a busy signal.....SO, I picked up the phone and called.....and got right through. I started explaining all the symptoms - and we got an appointment for Thursday. They wanted him to have a CAT scan first and then come to the office. Well, he has to be pre-treated for a CAT and cannot eat before. I asked about both - but was told all was ok........ Thursday morning, on the way to the hospital they called and said it would not be a go because of the above. We rescheduled for Friday. On the way home, the doctor's office called and decided to see us anyway. He looked at Tim and said his condition was not chemo related - but he didn't have a clue. He sent us across the street for a chest x-ray. We took back the pictures and they said the lungs were pretty messy - he had pneumonia! He prescribed some antibiotics - and listened to his chest. He said he didn't really hear anything but nonchalantly asked how long he had a heart murmur? I gave Tim a panic look knowing there shouldn't be one. I asked about scheduling an echo of the heart - and he said why not take care of the pneumonia first - and go from there in a few weeks.........

March 8 - Here we go again!

It is Sunday afternoon. Tim's had several more DR's and follow-ups and will probably do nothing for the rest of the day. (Not that he does anything anyway....). Tomorrow they scheduled a catherization - to look for blockage - and a TEE where they go down the throat to look at the heart. After that we will wait to see the surgeon and hear what he has in store and when. The cardiologist said he hopes for Tuesday or Wednesday....but the surgeon will make all the calls from this point on. Tim has the flu - that is the conclusion from infectious disease. They are not real positive on pneumonia. His lungs are clear. We all have to wear masks - don't worry I have incriminating pictures! The infectious disease doctor caught me with mine off - I told him it was too claustrophobic and I was already infected anyway. He didn't like my comments. Oh, well. He didn't kick me out of the room yet.

I have been working on catching the blog up to date - so hope you have snoozed off from reading, yet. I would hate for you to spill a HOT cup of coffee on your lap!

For this being a "nothing" day - someone somewhere is writing the orders for Tim. The poor little nurse is working her legs off. They have ordered lasics to help with the fluid retention in Tim's legs. It's working.....He has to have an IV set up - they have put 2 in him so far that have not lasted. His veins are small and hard to tap. The poor little nurse just tried poking him 2 more times with no luck. She said she would put a call out for the SWAT team - at least that was what it sounded like. I guess if they can't put in an IV they shoot him and hopefully one of the bullet holes will make a spot big enough for the needle! I asked about a PIC line - and he's not a candidate, yet, due to the open heart surgery - they will PIC him all over at that point to set up lines. They have set up a vein mapping and an ultra sound of his arms and legs - looking for clots. In the meantime, Tim looks the best he has in weeks! His color is back, his breathing is normal, and overall he feels and looks pretty good. I keep telling him he is loving all the attention - he sure didn't get that at home! He is in a private room - I think all new hospitals are headed that way. It is very large; it has a 42 inch Flat panel TV, and there is a bench I can flip down to sleep on. I will stay in the room until he is taken for surgery. While he is in ICU - I will have to find other sleeping arrangements. Once he is moved back to a room after surgery - i will be able to move back in. It will be on a different floor - but similar to this one.

The boys (Aaron, Mike and Matt) were all here Saturday afternoon and left Sunday afternoon. It was nice to have them here - not sure if they and Scott will make it back.