Thursday, March 31, 2011

Joe Wears Real Clothes

Yesterday for the first time since he went into the hospital on Feb. 18 Joe wore regular clothes!  Since getting out of the hospital, Joe has only been wearing T-shirts and sweatpants but as of yesterday he is back in his jeans and regular shirts!  This may not sound like much, but I'm pretty sure he was sick of sweatpants.  We haven't heard yet from the surgeon about the results of the CT Scan.  I am thinking that we won't until the report is uploaded to his Healthview account online.  He is still have trouble sleeping through the night due to occasional bouts of nausea and his fevers have still been present off and on but none of them have gotten too high the last few days.

I'm off to the orthopaedic clinic tomorrow for an MRI on my foot.  I am so sick and tired of that boot not to mention the crutches!

Tuesday, March 29, 2011

7:30 pm CT Scan

They took Joe back at 7:10pm and he just came walking out and it's only 7:29! We're out of here before we should have even begun. Now home to eat!

Monday, March 28, 2011

A Long Day's Journey into Insurance Aggrevation!

Today was Joe's follow up appointments with his surgeon and oncologist.  We arrived at Duke at 7:15am, with ice and snow pelting us as we waited for the valet to come park the car.  Yes, given the hour, the ice and my lack of ability to walk long distances with this boot on my foot, we chose to use the valet parking.  We checked in a few minutes early, within 10 minutes or so Joe was called for blood to be taken, 15 minutes after that they called him for vitals and 15 minutes after that we went back to an exam room to wait for his surgeon, Dr. Tyler.  But before Dr. Tyler came in, Dr. Richardson (surgical chief resident) came and took off the wound vac to get a look at the incision.  She was highly impressed and stated that she felt there would no longer be any need for the wound vac, just gauze dressing, but of course the final decision would be made by Dr. Tyler.  She said he would be in shortly and left us for awhile.   While sitting there waiting, Joe heard his name being called from out in the hall.  I was daydreaming in my own head and heard nothing.  Then lo and behold, we hear Joe's name being called in the hall again.  I go to the door and flag down the person calling him and tell her that he's already in an exam room.  Apparently, the oncologist was ready for him since it was now 9am and time for that appointment.  So the onconology NP, Leigh Howard, came in and talked with us about Joe's chemo options and the schedule for beginning.  Of course right in the middle of that, Dr. Tyler comes in, see's Leigh in with us and backs back out of the room.  I guess they don't want to overlap.  When Leigh was done, back came Dr. Tyler and Dr. Richardson, they looked over the incision, Dr. Tyler agreed that the vac was no longer needed.  Dr. Richardson then popped out the rest of his staples.  We discussed with them that Joe continues to have fevers off and on every few days even though he is still on his antibiotics.  They sent him for a chest x-ray, at the clinic building, and for a CT scan over at the hospital.  That is where my fun and frustration began (please note, the word "fun" is being used in a sarcastic fashion).  We retrieved the car from the valet at the clinic and headed over to the hospital.  Our intention was to use the valet at the hospital as well, but when we pulled in front, there was a large sign "VALET LOT FULL", so off to the parking deck we went.  Then the long walk through the underground tunnel, up the elevator  to the 1st floor and around to radiology where Joe checked in.  About 10 minutes later, Joe's name was called and we went to the financial office.  Apparently the CT scan had not yet been approved by Joe's insurance and in order for them to do the scan at that time, we would need to sign a waiver that we would agree to pay for the scan should the insurance company come back with a denial.  Did I mention that the cost was $4000?  Can you guess what our response was?  So off we went back to the elevator, through the tunnel and up to the parking deck and back home, with no CT scan.

Joe has a tentative appointment tomorrow night at 7:30pm for the scan but has to be there at 6:30pm to drink the contrast (YUK!)....I say tentative because we have not heard from BCBS yet.  Joe will need to call the financial office at Duke tomorrow late afternoon to verify that he has the approval. Otherwise, no scan, no resolution as to why the fevers.

And so tonight, I'm Big Foot again but Joe is pump free!!!!!

Wednesday, March 23, 2011

Mid-Week Joe Update

Since the weekend, things around the Lupton-Holland household have been up and down. Saturday was a good day, lots of basketball that I enjoyed and both of us got lots of rest.  In the early hours of Sunday morning, 4a.m. to be exact, the alarm on Joe's wound vac went off saying there was a blockage.  We tinkered with the pump, shook the tubing, turned everything off and on but nothing would stop the alarm.  So Joe called the Home Health Care company and within 15 minutes we had a call back from a nurse.  Her suggestion was to change the compartment that the drainage empties in to, so that is what we did and the alarm stopped and it seemed to be working again.  So since I was now awake, I watched a show recorded on the bedroom DVR until sleep came again.  We slept fairly late, rising by mid morning.  Joe seemed to be doing ok and we went about our day.  Our lunch was delivered around 11:15am (thank you Dede) and we set about doing normal Sunday business.  By mid afternoon however, the alarm on the wound vac was going off again.  We turned it off and back on a couple of times and the alarm stopped and it started pumping again.  By early evening however, the alarm went off again and this time it said there was a blockage.  So Joe called the Home Health Care company again and got a nurse call back within 5 minutes.  He talked with her on speaker for about 15 minutes and we checked all the equipment per her direction but when it came down to it, the final suggestion was to cut off the machine, remove the sponge & pump from his open incision and manually pack it with wet gauze and cover it all with dressing.  Well I'll give you 3 guesses who was going to have to do this and your first 2 don't count!  Although I had watched the nurses and doctors do this in the hospital, I had not done it myself so you might say I was not thrilled by this prospect but I did it.  Let me tell you, I really put the dressing on that incision.  I practically covered his entire torso with dressing.  I was going to be absolutely sure that there was no way any drainage got through!  This was all accomplished with my hobbling around too!  Speaking of hobbling, I went to the orthopaedic doctor on Tuesday but my foot is still much to swollen for a final verdict.  Hopefully by next week the swelling will have subsided enough that they can get a good picture with an MRI and figure out the extent of damage. Meanwhile, it's me and my big black boot & crutches! But enough about me.
On Monday, Joe did not feel well and didn't do much of anything but lay around the house all day. The nurse did come and remove my excellent packing and put in a new wound vac and got it working perfectly again. Tuesday was a much better day with Joe telling me right after I got up for work that he felt much better.  He went for a walk during the day on Tuesday and then spent time outside with Lucinda and Harrison who was mowing our lawn.  A HUGE thank you to them for doing that for us.  Although we have one of those "postage stamp" size lawns, with Joe hooked up to a wound vac pump and me on crutches, it simply wasn't going to get mowed anytime soon by either of us.
Today was another down day for Joe.  This morning he was complaining of nausea, so he took one of the nausea pills he has had since his chemo/radiation days.  Mike, Jeff W. and Artie came for their usual Wednesday lunch and Joe ate everything but by the time I got home from work at 5:15pm he was complaining of feeling sick to his stomach again and only wanted to lay on the sofa.  I had to beg & plead to get him to eat something for dinner, and he didn't eat much.
Since it has been so up and down, and today wasn't such a good day, I'm hoping tomorrow will be another good day for him.  Since the weather will be a little cooler, maybe he can spend a little time outside and get in a short walk. His appetite always seems better on the days he goes for walks.

His family is visiting on Friday, so I have my fingers crossed that he'll have a good day that day as well.  Regardless, I know that seeing them will have a positive effect emotionally and maybe that will translate to physically as well.

This coming Monday he has an appointment at Duke with his surgeon at 8am followed by an appointment with the oncologist at 9am.  At that time, maybe we will get a better idea of when his chemo will begin again and what that schedule is going to be like.

Thank you to everyone who has reached out to both of us to offer assistance, prayers and support.  We do feel truly blessed to have so many friends and family in our corner.

Saturday, March 19, 2011

Ahhhhhhhhhh....Saturday

What was supposed to be the day that I got the grass/weeds mowed in the yard has been altered to just be the day I sit around with frozen veggies on my foot!  Poor Joe, is being forced to sit and watch basketball with me all day.  He really would prefer not to watch, but being the "saint" that he is, he says "oh, it's fine".  Our family room looks like we've been through a natural disaster.
What looks like a "man purse" is actually Joe's wound vac pump.  If you look closely you will see the tube coming out of the black bag and up under his shirt to the incision.  Also close by are his cell phone, he can't be far from that, and some of his pills.
And that is my "boot".  Spent the morning with it off, putting frozen veggies on my foot to help swelling, but it's back on now so I can make the trek upstairs to try and get some laundry bags downstairs so we won't be stinking next week!

Ok, Joe got bored with basketball and went for a walk in the neighborhood.  I went out and sat on the front porch during half-time of the Florida/UCLA game. Joe ran into our friend & neighbor Ken (and Maggie too) during his walk and then when he got back home, MacKenzie was here to greet him as well.

Friday, March 18, 2011

Joe is HOME!

Sorry for the delay in posting that Joe was back home from Duke Hospital but a couple of things have gotten in the way.  But first...Joe was finally approved by his insurance for the Home Health Care wound vac pump whose delay had kept him in the hospital for 3 extra days.  He was released sometime around 5:30pm on Wednesday and after a stop at the pharmacy for new meds for him, we got home around 6:30pm.  A quick supper and before 8pm, we were both nearly asleep and went on to bed.  So my plan was to post his release on Thursday evening after I got home from work.  Well I did get home, fixed our dinners and then settled on the couch to watch a program on the DVR.  Soon there was a ring of our doorbell, I admit I was drifting in and out of sleep while watching the show, so at first I wasn't sure if the doorbell was on the TV or was ours.  I asked Joe this and he said it was our doorbell.  He started to get up, which meant disconnecting the power from his wound vac so I told him I would get the door.  I stood up, took one step, and then somehow, and I don't know how, managed to twist my left foot over, causing a crunching sound and fell to the floor in pain.  As I lay there, Joe is yelling at the person at the door to come in (Trisha, one of our neighbors) however, the door was locked and she couldn't.  Joe went to the door and Trisha had brought us over some food (very sweet! - Thank you).  However, I'm still laying in the floor moaning.  Joe comes back, asks what he can do, which obviously there wasn't, so he called our next door neighbor, MacKenzie, to come over and take a look. (She's a PE & Health teacher at Smith Middle in Chapel Hill)...she was over in a flash, put ice on my foot for 20 minutes, left to get her 2 kids across the street to Trisha to watch, came back, took the ice off, keep smiling and saying words of encouragement but then the discussion of possibly taking me to seek medical attention came up.  Up until then, although hurting, I had not looked at my foot.  MacKenzie left, returning soon thereafter with 2 neighbors to help get me to her van which miraculously had appeared in my driveway.  When Joel & Casey arrived and they helped me up, was when I first saw the enormous bulge on the top side of my foot.  Uh-oh..this can't be good.  So off to Duke Urgent Care.  Long story (I know, it is long), short, after x-rays, there appeared to be nothing broken, but there was so much swelling that they could not tell if there was any tendon or ligament damage.  So on came the walking boot cast and crutches until my appointment with the orthopaedist on Tuesday.  And that, ladies & gentlemen, is why this post about Joe being out of the hospital is so late!

He is doing well, has his first appointment with the Home Health care person to change the sponge on the wound vac today between 2-2:30pm.  His appetite seems to me to be less, which given his weight loss, is not such a good thing.  He says he is snacking between meals, but since I have been at work during the day, I haven't seen it for myself...not that I don't believe him mind you :).

Thanks to everyone who has inquired about him, prayed for him and sent cards & flowers.  The outpouring of love has been wonderful.

Tuesday, March 15, 2011

ANOTHER day at Duke

Yep, you read that right. Another day at Duke. We remain hopeful that the insurance/home vac pump issue will be resolved tomorrow and I get to take Joe home.  Not that the hospital is a bad place to be, and the staff/nurses/doctors have been phenomenal, but Joe is so bored with being here and misses the comfort of our own home.  Only saving grace tonight...."GLEE"!

p.s. Joe walked over a mile today.

Monday, March 14, 2011

Disappointment with a capital "D"

Joe's insurance has been great....until today.  Now the battle is on to get them to approve the home version of the vac pump for his incision.  Seems they would rather pay out thousands per day for the hospital version of the vac pump than the couple of hundred per day for the home version.  Patient resources is doing their best to continue the battle so Joe can get out of the hospital....yes he is still here, unnecessarily.  Can you tell I'm a tad bit irritated? The only redeeming features, the staff here at Duke has been so great and I love the chicken tenders from the cafe!

Tomorrow I will go on back to work since it could possibly be another couple of days before there is resolution.  Better to just go through a regular day and hopefully just get a call to come get him.  I've had my operating instructions on the pump.  Joe just waits.

No Early Release....

Well I have had my instruction on how to cut the sponge to fit the open incision, insert the sponge in the open incision, cover the sponge in the open incision, cut the opening for the pump suction attachment in the sponge in the open incision, attach the suction to the pump and turn the pump on, while looking for a good seal and check for any air getting in.  Now if the Home Health care people would just get here and give us the "take home" model of the pump then Joe can get out of here.  If it had not been for the "pump" instruction, my day would have been better served at work.  I think Dr. Tyler was a little overly ambitious in thinking this would all be resolved today. So with all that said, we've had a typical day at the hospital.  I've had a running rivalry with Vanita, the "Queen" of the galley (i.e. food service and where the ice/water machine is for this floor) over her being a UNC fan.  The galley is her domain and no one dare enter without her approval.  We hit it off well when Joe was up here for his surgery and so I am one of the few that is allowed in there unsupervised by her, so we renewed our good natured Duke vs UNC barbs on Saturday.  Needless to say she was not happy yesterday while I was on cloud 9!  However, today, when I walked down to the book store on the lower level of the Morris Clinic and picked up my 2011 Duke ACC Championship shirt, she was the first person that I proudly showed it to.  She reminded me that a few drops of accidental bleach might permanently damage it.  Therefore, I have packed the shirt away where it is safe <G>.

Joe went for a 9 lap walk around the unit today (that's 1/2 mile).  I wish I had my flip camera with me, but the phone camera got a little taste of it.

Sunday, March 13, 2011

Day 3 of 3rd trip to Duke

Today was a pretty good day at Duke as well, and I'm talking about Duke Hospital, not the whole ACC Championship thing....that I will save for Facebook!  I left early this morning and went home to clean up, do a load of laundry and visit with Dolly.  Joe's family arrived about 10:15am this morning.  His mom, Bettie, Brittany and Joshua.  I got back to the hospital around 11:30am just prior to Joe's lunch.  So while Joe ate, his family went downstairs and had their lunch as well.  I had picked me up something on my way back up to his room this morning.  Upon their return, I first took Bettie & Britt up to the 9th floor to see Joe's origami cranes and then I took Josh and Joe's mom up to take a look.  Although interested, I think Josh enjoyed the view of the Duke Life Flight helicopter more!  It was a good visit and Joe really enjoyed seeing his family and I'm sure it helped his mom & sister to see Joe in such good spirits too.

After they left in mid-afternoon, we walked some around the unit and went up to the 9th floor for Joe to see his cranes as well.  Then after dinner, we did another walk and all in all, although a pretty good day, he is a little more tired than usual and already asleep in bed.

Dr. Tyler has indicated that Joe will be going home tomorrow, but what time is anyones guess at this point.  He will be getting a special sponge & pump to go home with him as well as a Home Health care nurse to change/clean the incision.  However, I have been instructed that I will need to be present tomorrow when they demonstrate how it is done so if something should arise when the home nurse is not there, I will be able to handle it, or at the very least, not panic.  I'm SO looking forward to it.

Saturday, March 12, 2011

Day 2 at Duke during 3rd Hospital Stay

Joe had a REALLY good day today at Duke.  Although I probably shouldn't say that since whenever I get real excited about how well he is feeling, along comes a set back soon thereafter.  But for now, he feels good and is doing so much better.  He ate well today, walked in excess of 10 laps around the floor of the unit, had visitors off and on all day, without any overlap so never did the room get too crowded which always seems to tire him somewhat, and I even washed his hair for him this evening!  They are now changing the packing in the open incision 3 times per day, so somewhere around midnight, Niki his nurse, will be in for that fun chore.  Speaking of Niki, when she came on duty tonight at 7, when she first came in the room after getting notes from the day nurse, the first thing she noticed were Joe's eyeshades hanging from his IV pole.  However, her thought was, and she said this out loud, "What is a fushcia bra doing hanging there?"  We all 3 busted out laughing as she realized what it really was.
We laughed so loud, the other nurses at the nurses station, which is just outside Joe's room, came in to see what all the ruckus was about.   Niki was Joe's night nurse last night as well and has been so wonderful and kind to us both.  Speaking of good nurses, the day nurse today, Crystal, was no exception.  She was so attentive we really did feel like Joe was her only patient, although nothing could have been further from truth as it showed 5 other rooms on the assignment board for her.
Crystal worked so hard for us today I just want to say a big thank you!  You were great and we really appreciated all your concern & attentiveness.

Joe's family is coming tomorrow morning so it will be good to see them again and I'm sure a big relief for them to see him.  Hopefully he will rest well tonight and will have as good of a day tomorrow as today.  That should hopefully help them feel better about things.

Right now I am watching basketball without the sound on, the rain sound machine is going and Joe has his eyeshades on and is snoring lightly.  I think he has drifted off to a deep sleep.  But in about 1 1/2 hrs, he and most likely I will be awaked for the changing of the packing & dressing since they need to turn the bright lights on to see exactly what they are doing (probably a good idea, huh?)

It's been a long day but the anxiety has been eased some by the excellent care and the fact that the little sparkle that is usually in Joe's eyes has returned some today.  It does my heart good!  

We have chargers!

AM update:  Thanks to one of our best friends, Lara, we now have our cell phone charges & Joe's eyeshades for sleeping.  Thanks to Carrie and other friends who offered to go by the house and pick them up for us!  You guys are the BEST!!!  So cell phones are charging and we feel connected to the world once again.

Also a big SHOUT OUT to Ethan Wood for the beautiful hand made get well card.  We have it posted on the wall at the foot of Joe's bed where he can look at it!!!  He misses seeing you too and can't wait to resume your piano lessons.

Friday, March 11, 2011

2 Weeks and 3 days after surgery and we are back at Duke

Joe started running a high fever this morning and called me at work around 10:45am telling me that he had a fever of 102.3 degrees and that he had called the surgeons office and they told him to get to the Duke Emergency Department ASAP.  So off to the house I went, threw a few necessities in a bag (or course leaving 2 very important things out - cell phone chargers & Joe's eyeshades for sleeping) and off to the ED we went.  We got there around 11:40am and by 11:55am we were in an exam room where Joe could lie down.  The nurse was in within 5 minutes and the Emergency Internal Medicine physician within 10 minutes.  Blood drawn, x-rays and a CT scan soon followed.  By 4:30pm, we had seen several doctors.  Then just before 5pm, Dr. Tyler, Joe's surgeon and 4 of his associates all crammed into the little exam room to take a look.  Apparently the scans showed that everything internally was fine but that a possible hematoma had occured near the lower end of his incision.  A hematoma is a pocket or localized collection of blood usually in liquid form within the tissue.  Most times the hematoma will just be obsorbed into the body.  However in this case it did not and a bacterial infection insued.  Therefore, Dr. Tyler told them what he wanted done, left the room and the chief resident started to work with the 3 other doctors watching and trying to answer the questions she posed to them as she got to work.  She removed the staples from his incision from about mid-way to the bottom, thus opening up the incision and exposing all the pockets of blood, or hematoma.  They used sponges to soak up the blood and then packed the open incision with sticky gauze packing and then a large dressing over it and taped it down.  The bottom line, Joe has a large mass of gauze stuck down inside his belly. 
We finally moved up to the 2nd floor surgical unit around 9pm into room 2112, just up the hall 4 rooms from where he was 2 weeks ago.  


After getting in the room I went to the parking garage to retrieve his toiletries and some clothes, stopped at the cafe on the 1st floor on my way back and picked us both up some dinner (neither of us had eaten today)  and Joe has currently settled into his extended length hospital bed and is barely able to keep his eyes open.  Barring interruptions, which I'm sure will happen every 4 hours minimum, I think both of us will sleep well tonight.  Maybe even make it until his breakfast at 9am.  Since both our phones are nearing the end of their battery life, if someone needs to call please try either Joe's phone (his has more battery) or call the room at 919-681-2112.   


It is now nearly midnight, the basketball game is over and we are going to sleep.


***PS*** 9am was just a pipe dream.  The first surgical resident was in just before 6am and removed the gauze packing from his belly, re-packed it and dressed it and left.  This was followed by the nurse doing vitals, giving him his paid meds and he is back off to sleep.  As I type it is 7am and Dr. Tyler is due in somwhere around 7:30am.  But since the nurses change shifts at 7am anyway, I didn't see any reason to even attempt sleep since there is always plenty of activity during the shift changes.  Joe however, after getting his pain meds is fast asleep again.  Too bad he's doomed to be re-awakened very soon.

Tuesday, March 8, 2011

2 Weeks After Surgery

I know, I know.  I've been negligent with posting on the website about how Joe is doing.  A couple of reasons for that. 1- There really hasn't been much to report.  He sleeps a lot either on the sofa in the family room or up in bed.  Sitting isn't his favorite thing to do, or at least wasn't until I brought the office chair downstairs to the family room.  It is higher with arm rests unlike the other furniture in the room.  That has made it easier for him to lean back in as well as get up to a standing position.  His appetite has generally been good except for a day or two.  Sunday wasn't a good day for him.  He slept for close to 15 hours that night and I had to wake him just before noon to get him to get up, take his meds and eat something.  He didn't have much of an appetite that day and by late evening, he was complaining of chills and had started to run a slight fever.  We kept monitoring his temp all evening and by the time he went to bed early Sunday night, it had come back down somewhat.  However, me being ever the "hoverer", I packed a quick little overnight bag & took a shower just in case we needed to make a late night Emergency Department run. But we didn't and by Monday morning when I got up, his temp was back to normal, blood pressure normal and he said he felt much better.  Yesterday and today he says he has felt pretty good.  His family was here last Friday and his sister spent much of the time doing our laundry. Thanks Bettie, that helped so much. My sister was here all day yesterday to keep him company during the day so I knew if he started feeling bad again, I'd have someone to call me right away.  She also managed to get in a load of laundry also.  Thanks Phyllis, that was greatly appreciated.  There's something about having wonderful sisters.  Reason 2 for not posting: Since he got home on Tuesday and I returned to my regular work schedule, I'm lucky to not be asleep on the sofa by 7:30pm.  Sad, but true.

We have been getting meals daily from friends and co-workers and EVERYTHING has been delicious.  I don't know how to adequately express our gratitude.  On weekends, I am capable of coming up with something, but during the week with my work schedule we would either be eating much to late for Joe to be eating or having lots and lots of peanut butter sandwiches!

Joe has his follow up appointment with the surgeon at Duke on Monday, March 14th at 8:00am.  We are assuming that they will take out the staples from his incision at the same time.  I think I will wait outside the exam room for that part!

Thank you again for all the caring words, cards, prayers and hopeful thoughts that have come our way.  We truly are blessed to have so many caring people pulling for us.

Thursday, March 3, 2011

3rd Day Home

Today is Thursday and Joe's 3rd day home since being released from Duke following his surgery.  He continues to get stronger.  Yesterday we think he overdid it a little as he was a bit worn out last night so today he took it a little easier, spending more time resting rather than moving around the house all day.  This evening although tired, he is not nearly as spent as last night.  We might even be able to stay up until after 9pm tonight!

A big thank you to everyone who has brought food and stopped by to say hello to Joe.  The meals have been delicious and the visits have helped Joe's spirits immensely.

Tuesday, March 1, 2011

HE'S HOME!

What more can I say than he's home!  We got home from Duke around 10am this morning and Joe has been catching up on TV shows and rest.  Next up, getting him upstairs for the first time and in the bed for hopefully a better night's sleep than he has had in awhile!

Vaccination date set

 This morning at 8 a.m. we began the process of trying to get an appointment date.  I had 3 appointments at the Duke Cancer Center so I was ...