Sunday, December 10, 2017

On the 10th Day of Carlos' Hospital Stay....

Carlos got moved to 4w last night finally.   It's a newer room and very large, which is nice.  The light was broken so they couldn't turn it off.   Finally got someone to fix it in the middle night.   Unfortunately he got very little rest due to this so he's tired today.   They had a full house so took awhile to get a bed.  

Today is a "quiet day".  Just watching vitals,  tweaking meds,  etc.  We don't know if he's doing plasmaphoresis today or not.   His blood pressure has been creeping up so they are adjusting meds.   His creatinine remains at 1.8 so they aren't liking that.   We are hoping to see that come down.   There are still plans for echo tomorrow,  so hoping to see improvement in his heart function.  

I seriously doubt discharge will happen tomorrow unfortunately.   We weren't really getting hopes up cause we know how this works.  

The girls are competing together in a sand tournament today.   That starts at 11am so we will use periscope to watch them play.   Robin is covering me this morning so i could come visit.   Dr Guzman covered me yesterday for a bit.  So its been super nice to come visit even while I'm on call.   I'm off tomorrow afternoon so will head here to hang out the rest of the day.   I told Carlos I'm kinda missing him at home.  Just a little.   Lol!  My mom is doing a great job being the other parent but not quite the same :)

We continue to receive meals,  love, and support.  If you want to call Carlos or text him, let me know and I'll share his number.  Thank you!

Thursday, December 7, 2017

Day 7 - ICU Fatigue

He had a rough night last with minimal sleep.   They gave him a big dose of Lasix after we left so he was up all night peeing off fluid.   They said he put out 3 liters!   So he's exhausted and crabby today.  

He's getting lots of oral meds to control blood pressure,  etc.  They did turn off the Nipride so yay for that.   That had to go before he can exit the ICU.  They turned done the milrinone again so they are trying to get rid of that.   There's a small possibility he could get moved out of ICU tonight but the nurse said don't bank on it.   His blood sugars continue to improve so getting less and less insulin.   He's still not therapeutic on his tacrolimus but the plasmaphoresis may be filtering out some of the meds along with his fast  metabolism of it.  Still have the goal of discharge by the 15th.  We shall see.

I had a really rough day yesterday.   Going to the office was a bad idea.   By last night,  I was exhausted,  anxious,  and stressed.   Definitely flaring.   I'm so appreciative of all the help and support from everyone!

Tuesday, December 5, 2017

Buh-bye Pump

Yay!  The pump is out along with the catheter they were using for plasmaphoresis.  He's doing well thus far without it.   He's maintaining his cardiac output with the help of meds only.   They are trying to wean off one of the meds, switching to oral,  so he can transfer to 4w.  Hoping that will happen tomorrow.   He has to lie flat for 8hrs after removal of pump then hopefully can get up and moving around a little.   He's been quite the trooper given he's been in this position for 5 days now, but getting a little crabby now.  Says it feels like he's back at day 1.....sore, tired, uncomfortable. 

He's doing another dose of thymoglobulin (immunosuppressive drug) later today so they pre-medicate with benadryl.   So much for sleeping tonight!   He's been snoozing the last couple hours from the light sedation for the pump removal.

They placed a PICC line but placement isn't optimal for some of what they are needing so he has to keep the catheter in his neck - I guess the PICC line won't work for the plasmaphoresis tomorrow.   Boo.

I'm going to play with the periscope app next so that maybe he can watch the girls practice a little and see Libby's band performance Thursday night.  

That's about it for now!   Thank you again for all your support.   Had meals the last two nights from one of Libby's teammates from last year and one of the fab doulas I know.  We have received gift cards from two other families so help fill in blanks... big help for this weekend.   Daja and Libby are doing a sand tournament Sunday so I know they'll be hungry afterwards!   I'm heading back to work tomorrow so things are going to be more complex but my mom is super helpful.   I'll probably take a couple days off once he's discharged to help him get settled in.

Day 4 in the Batcave

Carlos continues to do well.   They are starting his second plasmaphoresis right now.   This will probably be the last as well.   The plan is to pull the catheter for that and the balloon pump at the same time around 6pm.  Which means he can get up and move around!  And hopefully means he can move out of the Bat cave tomorrow!

His creatinine continues to decrease,  now at 1.8.  Yay!  Liver enzymes are normal.   Yay!  His blood pressure is now starting to run high,  which is a good thing.   Means his heart is working more.   They did echo this morning but haven't heard about those results.

He continues to be in good spirits.  We appreciate the love,  support, meals, and visits!   All 3 kids are coming to visit shortly.


Sunday, December 3, 2017

Going in the Right Direction

Carlos had a great night.   He got some rest and his numbers started to improve a good bit.   Yesterday after posting,  I ran into Dr Steidley, and he was very positive.   Nice to start seeing that reflected in labs and vitals.  The girls and I came to visit last night after Libby's sand tournament.   Carlos was quite chatty, lots of volleyball talk (big surprise)  but I made them all shut up because I could see he was getting fatigued.  His cardiac output index was dropping.   Endocrinology visited and he got his plasmaphoresis done during the afternoon.

Today they have started weaning down the balloon pump.   It now only pumps every other beat.  He's tolerating that well so far.   The hope is to have it shut off by tomorrow so he can get up and start moving around a little more, which will lead to getting out of the bat cave and on to 4w.   His labs are improving as well.   His creatinine is down to 2.3 so hoping to see that continue trending downward.   His liver enzymes have decreased as well.   Yay!  They are continuing high dose steroids but that well skew down a bit tomorrow and he continues to have milnirone, which helps the heart to pump more effectively.   Will probably be a few days on that once balloon pump is gone.   I think he's going to have echo tomorrow to look at his heart function.   No one knows whether function will improve or not, that remains to be seen.   He will also have his second round of plasmaphoresis. 

His type of rejection is the 'good kind' I guess.  Comes on fast but able to get rid of it fast.   I guess the other type tends to smolder and never fully resolve.

Saturday, December 2, 2017

Blog Revival and Update

I haven't posted in a long time cause there really wasn't anything to blog about.  Carlos had been doing really well aside from some hiccups here and there, like diabetes (common 'side effect' of transplant).  The kids have been getting their yearly cardiac screenings without incident.   Life goes on and you start to forget about how bad things were.  You start to become complacent.  

Carlos had returned to work back in October, working 40 hours a week in a physically demanding job.   Disability had determined he was capable and no longer met criteria for disability.   Fair enough.   Unfortunately, not always great at self care and speaking up when not feeling well, he became very tired.   We all assumed it was just adjusting to working again and the physicalness of the job (hello 80k steps on the fitbit!).  I figured he would get in better shape and start losing some weight (he did initially).  He was enjoying the work as well.   But the tiredness didn't go away.   I thought,  well he's got diabetes and is overweight so it is what it is.   Then he was so tired,  that even on the weekends with no work he wasn't moving much from the recliner.   I even thought recently,  is this working thing really worth it but that's the money to pay for volleyball.   And he would be off all summer (he works at ASU so only works during the regular school year).

Wednesday morning,  Carlos texted me and said he was going home after only working about 90 minutes because he wasn't feeling well.   He said he was tired,  experiencing cold sweats,  dizzy, and body aches.  I thought damn, sounds like flu.   Told him to go home, check temp, and let me know.  Surprisingly he had no temp.   I was a little surprised cause he and the kids are dramatic usually.   They get a cold and run high temps!   He rested and seemed to be doing ok as long as he just stayed in bed.   The next day,  he stayed home and rested but was having a but of shortness of breath with exertion, still dizzy when up,  and tired but no fever.   I told him to call the transplant nurse.   Unbeknownst to me,  he has been having trouble earlier in the week with the walk from the parking lot to the dining hall,  having to stop and rest.  The nurse talked to the doc and they wanted him to come in the next day (Friday) for labs and testing.   I started to suspect rejection as I started googling  (lol).  And Mayo must have been thinking the same thing.

Yesterday we spent the day here,  starting with labs then ECG.  No appt with the doc was scheduled so I told him we will call the nurse before we leave because his heart rate wad in the 130s with walking.   Fortunately,  the ECG tech called for us as he had an abnormal heat rhythm.  They wanted us in Dr Scott's office next.   We discovered his BP was low as well.   Meanwhile, I'm using the Mayo app and looking at his labs..... his creatinine (kidney function) was 2.4!  New personal high for him.   Woot.  His liver enzymes were high too.  I knew something was going on and the chance of a weekend getaway at Mayo wad looking very likely.   Dr Scott wanted him to have the echo (which was scheduled for today originally)  and a heart biopsy (one way of checking for rejection).  So yesterday afternoon,  he had that done.   When they took him to the cath lab they said it will be about an hour.   When almost 2 hours had passed,  I knew things weren't going to be good.  Dr Hardaway came to talk to me.  It's never good when they take you to a private consultation room.

Basically, Carlos is rejecting the heart.   He ended up with a heart cath, an intra-aortic balloon pump was placed to help improve heart function, as well as a catheter in his neck (you can refer back to old blog posts to learn more about these things if you so desire), and a catheter in his groin.   As a result his kidneys and liver are angry.  They anticipate those organs will be ok once they get the rejection under control and get his heart working better.   So we are in the ICU, also fondly known as the batcave.  He's on lots of meds and monitors.  He will start plasmaphoresis this afternoon to filter out 'bad' antibodies in his blood and add 'good' ones.  We learned his rejection is grade 3.  The worst is 4.  😕  He has a 50% chance of pulling out of this and then we will have to see if the damage to his heart is permanent.  His ejection fraction was previously 55-60%, normal being 45-75%, and is now 38%.  His old heart was 10% when he was implanted with a LVAD.  However, the sudden change has caused him to be in cardiogenic shock

He's in good spirits today.  We just have to take it day by day and hope for the best.   We will keep things as normal as possible for the kids.... They will do what they are supposed to do - keep getting good grades,  go to practice,  etc.  We do not want to think about what happens if his heart doesn't recover.   I cannot cope with that right now.  

We appreciate all the love and support we have gotten so quickly.   I will update here regularly and share on Facebook.   Those that wish to help in some way,  Ramona has started a meal train for us,  for the next couple weeks,  which is hugely helpful.   Not having to worry about keeping the kids fed is a big relief.   The link is on my Facebook wall.   Once we see how things are going,  we may extend the dates.   I think Carlos will be here at Mayo for a couple weeks at least.  Carlos does have his cell phone and has looked at all the wonderful comments on my facebook post.   He very much appreciates it!   That's it for right now!

Tuesday, August 26, 2014

Pediatric Cardiology

Long time no post!  Again this is a testament to how boring life is now with Carlos and his health status :)  I'm not complaining! 

Carlos started back to school this week and is moving forward with completing his degree, which was interrupted by a downward spiral in his health back in 2011.  Only he's changing tracks.  I encouraged him to do something he is passionate about.  He can't waste this gift of a second chance at life.  So he's moving forward with becoming a coach, reffing for volleyball, and becoming a PE instructor.  I am so excited for him!

At a pediatrician appointment last month with Libby, the doctor recommended that the kids be evaluated by a pediatric cardiologist.  They are at risk due to a significant family history and concern that this could be hereditary.   Carlos' mother died after childbirth, when he was 2 weeks old.  She was 19.  Her father also died from heart failure in his 50's.  Given that the girls are athletes (I'm sure you have heard about athletes dropping dead on the court from undiagnosed heart conditions that no one would have expected) and may also have babies someday, he felt it was especially important to have them screened.

Both Libby and Daja were seen today.  Chris will go next month for his evaluation.  The girls had EKGs done and echocardiograms (ultrasound of their hearts).  I honestly expected everything to be normal and felt like this was a touch of overkill.  Low and behold, they found something.  Daja has a small ASD.  It's small enough to not be of any concern.  Libby has one also, somewhat larger.  She also has some mild thickening in her ventricular wall, but not a cardiomyopathy.  Both girls will have it re-evaluated in one year.  

I had a moment during Libby's echo.  All I could think was 'Omg, I have to do this again'.  But how did I get two kids with a congenital heart defect, mild as it is?  The cardiologist wants to see if they will close over time, because there's a thin membrane in both of the ASDs.  Libby definitely had more shunting of blood then Daja's defect did.  I wonder if Chris will have this too.  Even though it's all mild and not causing any problems, it's a little scary for me, the thought that their hearts aren't perfect.

I'll post more once Chris is checked out.