Discharge!!!

Today is discharge day and we are so excited!  It won't be until later today but we don't care :)

His prograf levels are therapeutic now after giving him extra prograf along with increasing his dose. 

His potassium is high so they started a couple new meds yesterday to decrease it.  He has to go home on a low potassium, diabetic, and heart healthy diet.  I wonder if they have a website for that combo of restrictions!  Fortunately the potassium and diabetic stuff is temporary.  It's looking like no need to check blood sugars at home but don't know about that for sure yet.

We are going to the transplant support group shortly and then the transplant coordinator will come by to do the discharge teaching and organize meds.  They supply him with a month worth of meds upon discharge and help him fill his pill box the first couple weeks. 

More later

Bad News But Not Really

We were told that discharge for tomorrow was a no go.  It's a bummer but not really disappointing as we both kinda didn't believe he would really get discharged.  We were prepared for that news.  Now they are saying Wednesday but we wouldn't hold our breath.  Instead, we will focus on Thursday or Friday.  Much better to get things handled than to go home and him get re-admitted.

He has not reached a therapeutic level for his prograf.  The goal is 8-12 I believe and he's just into the 5's today.  They keep upping the dose.  They said that different people metabolize differently and this is also common in men and black people.  They really need his levels to be stable before sending him home.

He had his first heart biopsy this morning.  No big deal as it's not much different from getting a plain old right heart cath.  Results from that tomorrow but they say rejection this early is very unlikely.

His arm looks much better today.  The IV vancomycin is doing the trick plus he's on the bactrim.  Using vanc for cellulitis is like killing an ant with a sledgehammer :p  Definitely on the mend although his white blood cell count remains elevated.  The blood cultures aren't growing anything though which is very good.  That means no blood infection.

His potassium level is on the high end of normal as a side effect of a couple of his meds so they are watching that closely as well.

Last creatinine from yesterday was 1.0 :)

He's in pretty good spirits as are the rest of us.  It's a lot easier to be positive than last time :)  He is gonna get to shower tomorrow - that's pretty exciting because it was such a production with the LVAD and he hasn't showered since May 23rd!  They tell us he can be in the pool at 8 weeks post-op.  He will have to be super careful with sun exposure since the meds can increase his risk for skin cancer among other things.

Happy Birthday and Cellulitis

Well, I texted Carlos to wish him a happy birthday when I woke up this morning.  The response I got was less than chipper.  Of course, I ask wtf is up?  He decides to be coy and says I'll tell you when you get here.  My stomach churns the entire drive to Mayo.

Unfortunately the arm Carlos has been having trouble with (numbness, pain, stiffness) now has cellulitis from the wrist to the armpit.  They started him on Vancomycin.  We saw an orthopedic surgeon as well.  He came to look at the arm and evaluate the nerve pain and numbness issues.  He said at this time, we would continue with current treatment.  If that didn't seem to be resolving the cellulitis and/or if the pain and numbness seemed to be worsening, he would order an MRI and consider surgical options.  We are very much hoping that will not be necessary.  His white blood cell count shot up to 15 so they did collect blood cultures and urine.

The only other less than positive news is that he still has not reached a therapeutic level for the prograf.  So they gave him diltiazem which helps the prograf to reach higher levels :-)   They have weaned the prednisone again.  He's done to 15mg twice a day.  He was on 25 a couple days ago.

He went to the third floor for cardiac rehab and rode an exercise bike for ten minutes.  I didn't go but I hear there's all kinds of cool stuff down there, like Dance Dance Revolution, etc.  They have a kitchen for patients to practice in as part of their occupational therapy.  Pretty cool.

We were very excited to learn his new ejection fraction is 65%!  That had us in awe.  His previous EF was 10%.  Dramatic difference and we are so thankful.

I'm Tired and Can't Think of a Post Title

Carlos had another great day.  More walking.  A little bit of very unmanly crying when seeing Stacy, the transplant coordinator we have always kinda favored.  A couple units of blood due to a drop in his hemoglobin (7.0, was previously steady at 7.2).  That's probably from all the blood they draw!

His creatinine is an amazing 0.7!  Haven't seen that in years!  I almost wonder if it was a lab error because it's a dramatic drop from 1.2 yesterday.  But he is still needing a little lasix to give his kidneys a boost to pee :)

He has now started on all the transplant meds since they started Valcyte today.  The meds are valcyte, diflucan, bactrim, cellcept, prograf, and prednisone.  He pretty much knows the names and what they are for.  Now he will start learning his doses, etc.  There will be a good bit of education over the next few days.

They are estimating discharge for mid next week.  We will hold out for early next week but not too stubborn about it.  We want to be safe of course.  But, me being a nurse, I worry about hospital infections.

He will have an echo tomorrow and I am excited to hear what his new ejection fraction is.  He'll have his first heart biopsy on Monday.  He will get that done every week for the first four weeks then every other week for awhile.

He starts inpatient cardiac rehab tomorrow :)

Someone from endocrinology came by but they are holding off on teaching him how to check his own blood sugars.  He has had very little need for insulin.  They are cutting the dose of prednisone down on Saturday so may not need any at all.  They said they will wait until early next week to teach if it's necessary.

We had visits from Kim and from an LVADer that we had previously only talked to online.  Pat is an amazing woman with an unbelievable story!  We really enjoyed meeting her and chatting.  Daja and Libby hung out at Jenny's house with her ten year old daughter.  They enjoyed themselves :)

I am just so tired by the end of the day.  I'm not sure but think it's a combination of my RA/fibro and the stress of everything going on.  The meals have been helping hugely - as many of you know, I don't like to cook and it's just one less thing to deal with.  Thanks everyone for your help!

4west!

Carlos got moved to 4w - woot!

He had a good day for the most part.  He was up pretty early so was sleepy by this afternoon.  He walked laps about 0530!  He had PT and is getting up and down from the chair much smoother and easier.  They shut off the dobutamine.  They use it to keep the new heart pumping as strong as possible then wean off it.  It also keeps the blood pressure up, which sometimes runs low secondary to the volume depletion.  His hemoglobin is chilling at about 7.2 (normal is 13-17).  Unfortunately, when he walked a second time, he experienced orthostatic hypotension, and wasn't feeling well.  They opted to give him some albumin and left the dobutamine off.  That seemed to help a bit.

He started prograf today.  They pulled the remaining chest tubes.  He has the PICC line and still has the pacing wires in but those haven't been used.  That's it!

We saw the nutritition lady to review dietary precautions and restrictions for transplant patients.  She also reviewed the diabetic diet which he will need to follow for awhile.  He did get a dose of insulin today, which I think was the first time since they stopped the insulin drip.  His sugar was 149.

His creatinine is 1.2 - wow!  Haven't seen that number in years!  He's still hanging onto fluid.  The arm with the clot is so swollen :p

Heading to bed - I'm beat!

Batcave

We are stuck in the bar cave another day.  His kidney function isn't fantastic yet despite the creatinine dropping to 1.3.  He hasn't seen a normal creatinine level in a long, long time.  They gave him some IV lasix as he has some noticeable swelling, and not just in the arm with the blood clot.  His weight has gone up despite the fact that he continues to have decreased appetite.  The lasix worked well and he started producing a lot more :-)  

The appetite is slowly increasing.  He's working hard to get the protein in, which helps with healing.  He walked four laps this morning and is ambulating to the restroom without assistance, unless you count someone pushing the IV pole and carrying the chest tube drainage collector thing. 

Blood sugars remain in great control.  He's getting a third dose of the thymoglobulin.  They want to continue to hold off on the prograf  until his kidneys perk up a little more.

They took out the arterial line so now he only has a PICC line and the chest tubes.  He's doing very well!

Can We Go Home Yet?

Carlos is doing great!  Yesterday he got up to the chair a couple times.  He was moved to a clear liquid diet.  They removed the Swan-Ganz catheter in his neck and replaced it with a PICC line. 

Today has been a little more exciting in terms of progress.  He walked three laps around the ICU pod.  I posted a picture on Facebook of that.  Libby video'd  the whole event with her Nintendo 3DS.  He's on solid food now although his appetite is still poor.  I reminded him about the need for protein for healing and strength.  They took out two of the four chest tubes.  I took Libby out for that as it can be pretty painful.  They removed the ladder catheter so now he's on his own to pee.  I'm sure he'll pee everywhere now :-)   He's off the insulin drip and has sliding scale insulin ordered if he needs it but his sugars have been good so far.  The prednisone can cause elevated blood sugars since it is a steroid.  Steroids are used to suppress the immune system so it doesn't attack the new heart.  He will stay on prednisone for about 9 months.  He's still on do but amine and some IV antibiotics.  They want to give him one more dose of thymoglobulin today.  They are considering more blood products as well.  Tomorrow, he will move to 4w. He had a small blood clot in his arm but it is superficial and they don't seem too concerned.

I'm disappointed to be missing the Mercury game today.  We had bought a Living Social deal to get box seats and photos on the court with the team afterwards.  I gave my ticket to Joy so Kim was talking Daja and Joy.  But Carlos, Libby, and I are gonna watch it here from his room :-)