Busy Week

Wow, this has been an incredibly busy week!  Chris has been busy resting & healing, and I have been busy attending to his every need.  I was nervous about this post-surgery period... and rightly so.  I haven't had a baby, and I'm guessing this is as close as it comes -- being depended upon for someone's every need.  I'm exhausted.  Luckily, my 'baby' grows up in 6-8 weeks!  :)

Chris had his orientation at the new St. Luke's Cardiac Rehab Center on Wednesday.  We really liked Amber, the nurse.  We were hoping she could remove the stitches from his chest tubes, but she didn't have a suture removal kit.  It turns out that her exercise class in the early afternoons works best for our schedule, so he'll be working with her every Monday, Tuesday and Thursday starting this coming Tuesday.  They're closed for the Memorial Day weekend.  His first week, he'll come in early on Tuesday to meet with their doctor and stay late on Thursday to meet with their counselor.

Thursday was his big monthly DaVita clinic appointment with their staff.  Everyone was happy to see Chris doing so well.  He even got a round of applause!  They did blood work, and Jennifer gave Chris 26,000 units of EPO since we didn't think he had any at the hospital.  Dr. Mallea asked us several questions about the surgery to which we didn't know the answers (like how many units of blood was Chris given), so Jennifer is going to get the surgical report from the U of Utah.  Jennifer was able to get Chris' sutures out, and he's VERY happy about that.

At the next visit, it'll be about 6 months since his dialysis catheter was implanted, so he'll get his transfer set replaced.

Coming up:

• We're expecting to receive a survey from the U of Utah Hospital to tell them what we thought.  Chris was very frustrated with their dialysis system and is looking forward to the chance to tell them about his experiences.
• We're waiting to hear from Dr. Gomez-Abraham's assistant Michele about the need for an echocardiogram.
• We're also waiting for Michele to get us a letter from the Doctor about Chris' June 5th follow-up trip to SLC.

Convalescing @ Home

Chris is convalescing at home.  We've been home since Tuesday evening and so far things are going pretty well.  He still has tape over the 18" long chest incision and then quite a few thread & wire stitches over the areas where the chest draining tubes were.

I spoke to Brandi at the new St. Luke's Cardiac Rehab Center.   It's the first in Idaho.  Chris has a 2-hour evaluation there on Wednesday the 23rd, and then they typically do rehab 3-4 times a week.  Brandy was a sweetheart on the phone and I know Chris will be in good hands.  I mentioned Chris' stitches to her, and she said that over in the ER area they can remove his stitches for free.  Woohoo!  I love a saved trip.

Chris has a benefit called WellDine from Humana that will be delivering 10 cooked & frozen meals to the house.  The meals will be tailored to his renal diet.  I think they'll be delivered tomorrow or Monday.

Other appointments coming up:
 - 5/24 his monthly labs & clinic appointment at DaVita
 - 6/5 back to SLC for a chest X-Ray and follow-up with surgeon Dr. Gomez-Abraham   (and perhaps another test -- waiting to hear from Dr. G's assistant.)

He's Home!

We made the 350+ mile drive home uneventfully.  I had gotten gas the night before, so Chris was able to sleep peacefully almost the whole way home.

Dad helped me unpack the car and we went about getting Chris ready for bed.   First item down the stairs was the dialysis machine.   Then his dialysis supplies.  We set those up.   Then down came the new pills.   I got everything ready for his pills for the whole week.

Tomorrow we have a whole list of places to call and things to do.  Just glad to have him home and healing.

Heading Home

Looks like we're about ready to check out of the hospital!   Chris is already wearing his Denver Broncos jersey and he feels very ready to roll!

We've had visits from Cardiac Rehab and Pharmacy.  We have lots of new pills and new prescriptions.  Now it looks like we're just waiting on the final discharge papers.   We might even get out a little early... 2:00 maybe?

We'll head directly home.   Once there, we'll get the dialysis machine out of the car first.   Gotta get it hooked up so Chris' fluids can be heated up before we his cycle starts for the evening.

Disconnected

By 3:00 this afternoon, Chris' chest tube was removed.  He's not free from the hospital, but he's not connected to any machines right now.  Hopefully this will change in a few hours when they reconnect him to the dialysis machine.  (We just asked Nich to page them and make sure they get Chris connected before they leave to go home like last night.)

Chris took 3 laps around the ward after the dialysis machine was disconnected for the day.

We talked to a preventative cardiology specialist (Galina).  She gave us a cool book (which would have been helpful before the surgery).  She will help us get a prescription for cardiac rehab services when we return to the Boise area.

Meals today were much better.  He even got a visit from the director of nutrition services.  She apologized for the problems and thanked him for the photos & descriptions.  She said she has printed out the pictures of the lasagne to show the staff.

I called to order the free meal delivery from Humana this afternoon.  They need me to call back after he's discharged.  We're hoping that will be tomorrow around noonish, after the X-Ray shows that there's no more fluid building up in his chest.

Annoyed Today

Chris posts:

Well it's been a banner day at the hospital. They still can't seem to understand the no milk/wheat core concept but some people in charge of shit are going to have some interesting emails to read when they come in to work Monday morning.

My pain management could be better because one pill every 6 hours less than a week after open heart surgery just really isn't enough to keep me completely comfortable.

Also after 6 months of being on dialysis I kinda know what I need and how long I need it for but hearing the statement "I have used this machine 3 times" is not exactly filling me with confidence plus all the dialysis people go home after 8 so if you have any trouble they just give half asses explanations over the phone so I had to turn the machine off last night and its been running all day. I'll get maybe a half hour of freedom before they start it up again.

I've also still got one chest tube in so 2 more days minimum before I get to go home.

I'm at the hospital with him.  It's 7:40, and the dialysis machine has been finished for a while.   It should not have even been happening during the day, but they couldn't ever get the machine working last night.   So poor Chris has been hooked up all day and he'll be hooked up all night too.   I came back tonight to go for a walk around the ward with him and to help him back into bed.   But we've been waiting over an hour for someone from dialysis to unhook him from the machine.   He REALLY appreciates his home machine and nurse Jennifer @ DaVita now!

Dr. Gomez-Abraham opted not to order the removal of Chris' chest tube today.   There was still too much fluid draining from his chest.   Tomorrow, he'll look at it again.   It looks like Tuesday for discharge at this point.

Doing Great

Chris is getting better and better!

After the surgery, he had two wires connected to his heart.  They were there in case they needed to attach a pacemaker to regulate his heartbeat.  This morning, the doctor removed those two wires.

He also had two big tubes in his chest for drainage.  One of those was removed this morning, too. 

The big news is that the catheter is out and he has urinated. YEAY!  This was a big concern because he had a terrible experience with the catheter after the December dialysis site surgery.

Dr. Gomez-Abraham told Chris that the 2nd chest tube will likely come out tomorrow and he may be able to go home as early as Monday.  Wow!  I wrote down the phone & fax numbers to the DaVita pharmacy so the doctor can get his meds ordered.

Good Day Goes Bad

Friday morning, Chris was expecting to be moved from SICU to the Cardiovascular unit (CVMU).   We waited for an available room there until 5pm.

His meals were disasters!   He's got quite a few restrictions due to the gastric bypass (no dry foods, no milk) and kidney failure (low-phosphorus, etc.), so nothing they sent up was edible.  The last meal of the day was the absolute worst.  I had to take pictures.   Seriously, somebody needs to lose their job over this one.    Guess what food it is.

Okay, what did you think it was?   Would you have guessed LASAGNA?!   It was solid enough to be picked up and hard enough to *clank* when it hit the plate.   What an embarrassment!

I made a spreadsheet of Chris' medications for this trip, and I went ahead and made a nutrition spreadsheet for him today, too... so everyone down in the kitchen knows what he can & can't tolerate and some additional items that he doesn't like.   Definitely no onions!

Even before he arrived at the CVMU, there was a very nice dialysis tech waiting for him.  She got him all hooked up to his machine.  The connections & machine are quite a bit different than what he's used to.  I stayed in the room with him until midnight, and that machine beeped a lot!  He also drained off lots of fluid.   His feet are still a bit swollen, so they're planning to do some extra draining tomorrow.

Recovering in SICU

Chris spent the day today in the Surgical ICU (or SICU).  Look at all these machines!   And these are only on one side.  There are more on the floor and on the other side.

He spent most of his time on hemodialysis.  At first, he had a very large access site in the right side of his neck.   The doctors decided it was too large, so one of them removed it and placed a smaller one.  The smaller one was held in place with three stitches.  A chest X-Ray revealed that the access tube was too deep in the vein.   A different doctor came in, removed the access and placed a new one.   Luckily, this second doctor was much more concerned with managing Chris' pain.   He numbed the site and gave him an extra pop of meds.   Late in the afternoon, there was a blood clot in the tubing.   The hemo team had gone for the night, so they decided to take him off dialysis for tonight.   His access site has been removed and stitched up again.

He was well enough in the afternoon to have some lunch.   It was a rather dry chicken breast and, due to his gastric bypass, it didn't go down well.   He ate some dinner and also received a bit of a menu for tomorrow to choose meals.  The SICU wasn't very well prepared for the meals, but this is because they almost never have patients well enough to eat meals there.

His mom & I went back to the hotel in the afternoon.   I took a nap and she got some hot tub time.  Chris evidently had a good time while we were gone... complete with a sponge bath.  The only difficulty there was that they rolled him almost all the way over to his front in order to wash his back.

Tomorrow after rounds, they plan to take Chris to the cardiac ward.  Hopefully they'll have his blood pressure and fluids managed by then. 

A Surgical Success

The surgery is complete and it was a success.  Dr. Gomez-Abraham came out to talk to us.

Chris' valve was not in good enough shape, so Dr. G replaced it with a bioidentical cow valve.

In Surgery

We came to the hospital as scheduled at 11:45am.  We got checked in and headed into the pre-op area.   They asked if he had taken the prescription pill and applied the nasal cream he was given... but he didn't receive either of those yesterday.

We got the standard merry-go-round of doctors, nurses, questions, and a shave.   And there was lots of waiting.   And more waiting.   Almost the entire length of Red Dawn.   And then they wheeled him to surgery.  

There's a board that shows each patient and where he/she is in the surgical process.   Right now, it has Chris blocked out for another 3 hours.   It may be longer if they have to replace the valve instead of repair it.   Thanks for all your thoughts & prayers!

Pre-Op Tests

We were at the hospital at 8:30 for tests at 9am.  I thought the nice medications spreadsheet I made was in the box in the car, but a quick search didn't yield any results.  So in we went without the meds list.  *ACK*  It was a giant pain not to have it, but then we remembered that I had e-mailed it to Chris last week for him to print out.  Whew!  I was able to pull it up on the phone.  {Later, I found the pile of pill spreadsheets in the box where I looked!  ARGH!!}

We met with a nurse, the Anesthetist (Dr. Morgan), and the PA (Dr. Allen).  Each of the three went over his medical history and medications {Grr!}  We learned that the bio-identical valve replacement part (if necessary) will not require him to be on any anti-rejection meds.  They gave us a phone number to call to find out the surgery schedule, but they said that the surgery will most likely be very early in the morning.

The nurse took several vials of blood for testing and Chris gave a urine sample.  They were concerned about infection because Chris has a bit of a sore throat and thought there might have been some discharge from his cath site this morning.   If there is any infection, the surgery will be on hold.

Chris got a quick chest X-Ray downstairs in Radiology and then we had lunch at the cafeteria.  We made it back to the hotel by 12:30, in time for a nap before picking up Chris' mom at the airport.   We called for the schedule tomorrow, and it turns out that the surgery won't start until 12:45, so we have to be at the hospital to check in at 11:45.

Chris had a very nice steak for dinner (thanks, Bill!) and is hooked up to the dialysis machine for the night.  He's resting comfortably now.   Tomorrow morning, he has a special soap for his shower that the nurse gave us.

Getting Ready

Poor Chris is still hobbling around on his gouty foot, despite the course of steroids and the medication change. It's making getting ready for the upcoming trip more difficult and arduous, but preparations must continue.

I put together all of Chris' medicines for this week. I made a big spreadsheet of them and made several copies to hand out to everyone that asks next week. I did this for past trips and it has turned out to be a giant time saver. All of the medication bottles are in a Ziplock bag, in case he needs any of them while we're there. (This reminds me, I'll need to add his dialysis/cath site cream... and make sure that the surgeon ads it to his post-op care orders for the nurses!)

We're still going through the list of items that need to be done, scheduled, and packed. Some of the things to 'do' were really things to 'eat'. Chris wanted to have venison (a rare treat for him), so we went to our local Co-op and bought some. He cooked it tonight and it turned out perfectly! Dad loved it, too.

Chris has requested a blueberry coffee cake, but my feet and ankles have been too tired to stand up in the kitchen for that long.  I'm running out of time, so it looks like tomorrow afternoon may be the time it finally gets done.  The blueberries did get washed and dried today.  (Photo is the last one made, in January.)

Dentist & Pre-Surgery Instructions

Chris had his teeth cleaned this morning.  They also did an X-ray, and found three small cavities.  This was shocking because Chris has only ever had one cavity before and he has been taking the best care of his teeth in his life this last 6 months.   He's guessing it's because he's eating a lot differently and consuming a lot less milk since the gastric bypass.

We had quite a few e-mails and phone calls with the heart surgeon's assistant today.   She had several responses to questions we were hoping to have answered before the surgery.   Here's what she said:

• Check in at  “check in” desk in front lobby of hospital at 0830-PRE OP appt scheduled for 0900. (They will get Mr. Ross checked in and then send him to Pre-surgical admissions on the third floor.)
• Meet with anesthesia, get consented for surgery on third floor-(they will have your packet of tests for you, and let you know what time to arrive Wednesday morning at this meeting)
• Nothing to eat or drink after midnight Tuesday, May 1st.   (I hope she means May 8th -- a whole week without food might not be good!  Guess I have to call and double-check.)
• Take medications as usual Tuesday, and continue peritoneal dialysis as usual Tuesday. (Dr. Gomez-Abraham will discuss with Nephrology re:placing access catheter and dialysis after surgery.)
• DO NOT TAKE MEDICATION WEDNESDAY MORNING!

Later, she asked about his teeth and I let her know that he had just had his teeth cleaned this morning.  He had been cleared by Dr. McRae back in November, I think it was, for the kidney surgery.  I gave her his number so she could check in with the dentist.

Tonight, Chris decided to go on an 11-hour cycle with the dialysis machine.   He's in there with both cats.   Here they are:

First, we have Dusty napping on the chair in the dialysis room.

And then there's Digit, Daddy's princess, under the covers(!) purring.  *sigh*  This used be my awesome blanket.  I've even ordered a new one, but it just wasn't the same so I sent it back.  She better keep her paws off my husband!

Right now, I hear "Are you warm and comfortable, Digit?   You look warm and comfortable."

DaVita & The List

Thursday Chris had his monthly DaVita appointment.  There were lots of topics discussed, mostly surrounding his upcoming surgery.  He did get some EPO and the doctor and new PA (also named Chris) checked out his gouty foot.

Jennifer and the PA allayed some of our fears about the hemodialysis.  Chris has been very worried about having the access site in his neck.  However, they told us that it would be a central line in his chest.  This is awesome for a lot of reasons, one of which is that they can also use this access site to give him medications and test his blood.  Yeay for fewer needle-sticks!

During one of the discussions with DaVita staff, Chris got an unexpected call from Heidi, the transplant coordinator at U of Utah.  She had presented Chris to the committee and he has been approved for the transplant.   This means that he's officially on the transplant list, and starts accruing time starting April 26th.   *happy dance*   He won't actually be able to have the transplant until he's 6 months out from his heart surgery, but it's awesome that his clock has started.

Heidi said that Dr. Gomez-Abraham is going to want to see Chris back in SLC for follow-ups about a month or so after the surgery and then again at about six months after.  Heidi wants us to let her know when we schedule the 6-month trip so Chris can have some time to meet with her.

We mentioned that Chris was scheduled for a teeth cleaning tomorrow, and Jen was concerned about the antibiotic that the dentist prescribed.  We called her after stopping at Walgreen's to pick it up.   She told Chris to take 4 pills about an hour before his appointment tomorrow.

Plans & Protein

Yesterday we got the thumbs-up from the insurance folks for travel.  They booked a hotel for us.  It wasn't our usual place, but we checked it out online and it seems just fine.  There's a fridge & microwave in the room, which is something our last hotel didn't have.  Plus they have airport and hospital shuttles.  Necessary things like free Wi-Fi (for me) and coffee maker (for Mom-In-Law) are also included.

Although we're supposed to be getting Whole Foods and Chick-Fil-A in our area within the next 6 months, I'm still looking forward to having some of my favorites while in SLC.  Hey, I know this isn't a vacation but I'm trying to seek out some little positives.  Oh, and Chris' friend K. offered to show MIL and me a new mall and grab some sushi.  I really enjoyed meeting her during one of our previous trips.

Speaking of thumbs-up, we got some good news from the Heidi (the transplant coordinator).   She said that once she gets word that Chris' heart surgery was successful, she can present his case to the transplant committee at their meeting the very next day!   Since his heart was the last hurdle, she said he can get approved and start accruing time on the transplant list right away.  Awesomesauce!

Today we heard from Chris' nutritionist from DaVita.  We normally see her during our monthly appointments, but she's going to be out of the office then.   She said that everything looks good from his recent bloodwork, except that his protein is low.  Looks like I have to hide the Chef Boyardee and invest in lots of boneless skinless chicken breast while it's $1.99 a pound!


Next Week:  Chris has his monthly kidney appointment @ DaVita on Thursday and his teeth cleaning Friday.  Keeping his pearly whites very clean and, most importantly, germ-free, is key... especially since he might need to be on immunosuppressive drugs sooner rather than later.

We Have a Date

We spoke to Dr. G and we have a date for the surgery:  May 9th.   He has asked that we come to SLC on the 7th and have Chris available for testing on the 8th.

He also said that Chris' surgery will NOT include the aorta replacement.   The ascending aorta is not as dialated as he feared, so that procedure will not be necessary.   Once the valve is better, the ascending aorta will not continue to deteriorate.

Speaking of the valve, he is going to try to repair it with Chris' own tissue first.  If he doesn't have enough tissue to work with, or if the repair doesn't work as well as he would like, then he'll replace the valve with bovine tissue.

So two happy things:  a date to shoot for and a surgery with significantly reduced risk.   Yeay!

Lots more work to do before May for me... need to have the surgery and the travel pre-authorized for insurance purposes.   Already working with Dr. G's medical secretary for the information we need to file all that paperwork.

Also, nurse Jennifer called.   They want Chris to come in for an EPO shot on Wednesday afternoon, so we'll head to DaVita for that.

Pseudo-Aneurysm

We went to the Vascular Lab at St. Luke's Eagle this morning.  Chris had an ultrasound on the painful cardiac catheter site in his groin, at Dr. Mallea's request.

It turns out that Chris has a pseudo-aneurysm at the site.  However, it's small and doesn't seem to need immediate treatment.   Here's some information from Wikipedia:

A pseudo-aneurysm is a collection of blood leaking completely out of an artery or vein, but confined next to the vessel by the surrounding tissue. This blood-filled cavity will eventually either thrombose (clot) enough to seal the leak or rupture out of the tougher tissue enclosing it and flow freely between layers of other tissues or into looser tissues. Pseudo-aneurysms can be caused by trauma that punctures the artery and are a known complication of percutaneous arterial procedures, such as arteriography, arterial grafting, or use of an artery for injection, such as by drug abusers unable to find a usable vein. Like true aneurysms, they may be felt as an abnormal pulsatile mass on palpation.

He will follow up with Dr. Mallea on Thursday the 5th of April.  However, he'll need to go to the ER if the site gets any more painful, red, larger, or hot.

Heart Surgery Coming in May

Chris spoke to nurse Jennifer and Dr. Gomez-Abraham {Dr. G} while I was out running errands this morning.   Here's what he relayed to me:

Dr. G recommends that Chris' ascending aorta be replaced, along with the repair of the valve.  He said he could do it in two weeks, but Chris felt that was too soon.  Dr. G is going to be in Europe at a conference for about 2 weeks, but he could do the surgery in the beginning of May when he returns.  Chris agreed to that.

Dr. G said that Chris can't do peritoneal dialysis (PD) during the heart surgery, so he'll have to do the hemodialysis during that time.  We'll work with Jennifer to transition to the blood dialysis when the time comes.

Chris will have to be in the intensive care unit in Salt Lake City for several days and in the hospital a total of 7 to 14 days while recovering from the surgery.   General recovery at home will take about five or six months, if the patient is in good health. Patients are advised not to do any heavy lifting for 6 months after surgery, to avoid damage to the sternum (the breast bone).

At the beginning of next week, Dr. G will call us again with more information.  At that time, I hope to get an exact surgery date so I can get everything coordinated with insurance, travel, etc.  I'll post an update as soon as we know anything further.

Not sure whether/when Chris could go back to the peritoneal dialysis (PD) after the heart surgery.  Need to find out about that.

Tomorrow at 9am is Chris' ultrasound on the catheter site from the angio.  It's still hurting.

Heart's Looking Good, Considering

We had a standard appointment with Jennifer today, and then a follow-up with Dr. Mallea to go over the results from Salt Lake City.

He said that Chris' heart, aside from the aorta and the valve, looks really good.  Heart function is about 70%.  Nothing seems to be blocked or calcified.   He said that it looks great for a positive outcome.

Chris is still experiencing pain from the catheter site in his groin area, so Dr. Mallea took a look at it.  He was concerned about the possibility of a hematoma there, so he's prescribing an ultrasound for Wednesday.

Still waiting to hear from Dr. Gomez-Abraham about his surgery recommendations.   We'll call Heidi, the transplant coordinator, tomorrow because she doesn't work on Mondays.