Libby's post

I wish my dad had a heart right now we cant wait. I love my dad and he's funny but, we are hoping that he gets his heart on Father's Day or on the Fourth of July. Carlos my dad he helps me on my volley ball and im happy to have a dad like this. But a lot of kids don't have a funny, playful, and fun dad like this family. Some times before i go to bed, i always hope that my dad will get a heart real soon.I love my daddy the way he is because he's the best dad u could every had.

Libby

Getting Closer

We were at the Mayo on Friday for a check up and one of the transplant coordinators comes in.  She tells us that we need to start learning the meds for post-transplant as Carlos' time could be coming soon.  He's moving up on the list and they have already turned down a couple offers for him!  It's crazy to think that we are getting that close.

Then he had to be deactivated.  Our insurance switched and i finally got the new card so he has to be status 7 until transplant is pre-authorized with the new company.  :p. Shouldn't be much longer than by the end of this week.

Otherwise, Carlos continues to do well.  His weight is doing a slow creep upward but he isn't experiencing any heart failure symptoms so no one seems too concerned.  I'm a little paranoid as this has been a re-occuring theme in the past. 

Quiet

Things have been quiet in LVAD life.  Carlos has been behaving, keeping himself out of the hospital.  He's doing well with cardiac rehab, getting stronger.

We are back to seeing the Mayo people every two weeks.  We go next week for his checkup.  We are hoping they will let him go to just once a month since he lives with an anal-retentive nurse that watches him like a hawk.  Keep you fingers crossed.

Last week, he had his 3 month anniversary testing.  One of the tests consisted of him seeeing how many times he could walk up and down the hall in six minutes.  I can't wait to see how much they charge for that!

My previous employer, who I get Cobra through, decided to change insurance companies.  We current;y have Aetna, and will be going to United Healthcare.  I almost had a heart attack because Mayo wasn't contracted with UHC....until recently - whew.  I was having visions of transfaerring care to UMC in Tucson :(  For only two months - because that's when Cobra coverage runs out.  My children and I will be testing the fates and going without insurance for 6 months so we can then get insured through the state's high risk insurance pool.  Carlos will have medicare kicking in the day after the cobra expires so thank god for that.

That's about it for today.

Daily Dressing Changes and Equipment - the missing version

What does daily dressing changes mean? It means pain in the ass. For both of us.

Once a day, he has to be interrupted from whatever he is doing to come have his dressing changed by me, when it is a good time for me to do it. Sounds kind of selfish of me doesn't it? Let me explain. When I'm off, then no big deal because we can do it whenever. But I hate waiting until the end of the day, because then I'm tired. Add a shower for him to that, and it's a major production. There is no such thing as a 'quick shower' anymore for Carlos. Then add the fact that he has always been a daily shower kind of guy as part of his bedtime routine. For him to shower, he must move all the equipment into the waterproof shower bag...

Here is the sanitarium cart that I searched far and wide for with Beth.  The goal was to find something pretty but not expensive, with wheels.  2 out of 3 isn't bad :p  The blips of color on the right back part of stuffed fake flowers.  I feel like those really add a great touch :)  The top part is used to set up the sterile dressing change.  You can see the long cord that connects him to the power module during the night, resting on top right now.  On the second shelf is the power module, which plugs into the wall.  It has a backup battery that's good for 30 minutes if there is a power outage.  A very loud alarm goes off in that case, and we switch him to batteries.  On the bottom shelf is the battery charger.  It can charge up to 4 of the 8 batteries at a time.



Here we have the bag he wears....his 'manpurse' as we call it.  He refuses to let us bling it - what a lame-ass.  It even has a luggage tag because if he were unconcious, we wouldn't want someone taking that off of him.  Inside the bag are the 2 batteries and the controller (which is like a small computer).  This bag with equipment weighs about 5 pounds.

What you see in this picture below is the dressing, with the driveline coming out of it, and going to the bag.  This is what attaches the pump inside his chest to the computer and batteries outside, in the bag.



Here, you see the driveline exit wound.  He has healed very well and remained infection free for the last 3+ months since having this placed.  The driveline is made with some sort of fancy material that allows the skin to actually grow onto it!

And here's the bag that must go everywhere with him.  Going to the store to pick up juice?  Yes, the bag goes too.  It contains backups of all his equipment (controller, batteries, manual, etc.).  Won't let me bling this either :p

And there you have it.  



Bitter, Resentful, Pissed Off

Yep, that's me.  Just feeling mad at the world in general.  I'm not going to go into it here so as not to offend people that may read this.  Because some of those people are who come to mind.

I'm not sure what's up with these feelings.  I go along all fine and dandy then just get hit with a bunch of emotions that feels like getting hit with a shovel in the face.  I don't like it, don't like feeling the way I do.  I'm not the one that has the LVAD.  I'm not the one that's sick.  So then I feel guilty.  Vicious stuff.

And I'm pissed off that my last blog post, done on my tablet with pictures isn't uploading nor can I open it to copy and paste.  So there's a blog post floating out there, that I'm determined to get back and uploaded.

Discharge Today

Carlos is being discharged today - woot! Unfortunately, this unexpected hospital stay caused me to miss a birth I would really, really liked to have been at. Fortunately, this person was very understanding (thanks Bre) and she was in great hands with Ramona and Dr Kells. No more hospitalization, dammit, until the 'big one'. Waiting on paperwork, then we are out the door!

Carlos is a Pain in the A$$

I love Carlos but seriously....his taste in weekend getaways leaves a lot to be desired.

Let me back up....I left everyone hanging last post. Carlos was finally discharged on the 16th. He's been doing absolutely fine, chilling with his status 1b. We were settling into 'the wait'. Every time the phone rings I think is that THE call?'. I think that is starting to go away a little now.

Then.

Yesterday after he gets home from cardiac rehab, he's not feeling so good. Long story short - diarrhea, low-grade fever, fatigue. In your average person....not a big deal. With Carlos, who is not average by any means, it means admission, CT scan, blood work. Everything checked out fine but they wanted to keep him overnight for observation. You can imagine what a bundle of cheerfulness he was at this news. There was definitely some pouting going on. This necessitates rearranging my work schedule and getting Ramona to cover me :p

Then apparently, he pulls an Exorcist move last night and projectile vomits all over the nurse. The only place he doesn't get it is on the wall. So no discharge today. The docs told him that if he doesn't do it again, then he can go home tomorrow. I told carlos, even if he has to throw up in his mouth then swallow, he better. Such overkill for a mild stomach virus.

So that's about it for now.