Is There a Light at the End of the Tunnel

I haven't blogged in 4 days!  How time flys!

Carlos continues to do better.  The primacor was shut off on the 21st and he has done fine without it.  It was so nice to get rid of the IV pole.  Only the LVAD stuff left to deal with.  But then they came in yesterday morning with a Heparin drip.  Heparin thins the blood which is very important in LVAD patients.  The body recognizes the foreign object in his body and tries to clot.  Those clots can then break off and travel to other places in his body that can cause major problems, such as stroke or pulmonary embolism.  So he will go home on coumadin, persantine, and a regular strength dose of aspirin.  They monitor his INR with the goal of keeping it between 2 and 3.  He was therapuetic before but then it started dropping.  He has always had a difficult time getting therapuetic.  So having the heparin restarted ruined our plans for our first outing this morning.

We were supposed to do our first outing. This outing we do with one of the VAD coordinators and the perfusionist. We would go to our home to look at where we plan to set up the equipment and check for any safety issues. I even got my bedroom all cleaned up in anticipation of this visit. I didn't want anyone to think I was a hoarder ( those who have seen our bedroom will understand this statement :-). Beth was an amazing friend because she came over Wednesday night and helped. She then, unbeknownst to me, finished the cleaning Friday when she came over to watch the kids for awhile. Thank you Beth!!! After the home visit, we would then go to Libby's award ceremony at the school pep rally. She was nominated for the monthly Character Counts award. There are 6 pillars that the kids are always supposed to be practicing, like responsibility for example. It's a big deal because the winner gets a new bike as well! We knew she would be getting the award but she had no idea! Carver and my mom attended. We were able to video chat and catch most of the award. We had some connectivity issues. We are very proud of Libby. Carlos was a bit emotional and I just reminded him this is why were are doing this, so he will be around in the future for these things.

We will do that first outing on Monday now, assuming his INR cooperates. Then we do the second outing on Tuesday. That one is just us and we have to be gone from the hospital for at least 2 hours. Then we come back to the Mayo and do paperwork then he is discharged and we go home :-)

Carlos has lost another 8 pounds of fluid since I last blogged. He hasn't weighed this little in many years (186). We passed our test on the VAD stuff so are now free to move about the hospital at our leisure. We get our equipment today as well. I have a month's supply of dressing change stuff at a lovely price of $226. Ugh. Insurance doesn't pay for it. That's about it for today :-)

Surgery, Gout, and Thank you

Carlos will be the second case tomorrow so he will go around 11 or 12.  I'm starting to feel very excited  as it is one step closer to him being awake.  I must admit, when they move him or suction him it causes him visible discomfort, this makes me feel reassured.  Response to painful stimulus is a sign of neurological intactness :)  It reminds me that he is still in there.  He will even try to open his eyes so I just hold his hand and talk to him.

The rheumatologist came by and gave him a shot of cortisone in his right ankle.  I don't remember if I previously mentioned this but he definitely has gout.  This was no big surprise to me as he has had a few episodes of random toe pain in the past.  When we manipulate that ankle for any reason, he makes major crabby expressions :p  They aren't going to let him take any other medicines for it until he can swallow pills.

I really want to thank everyone that has been helping us out through these tough times.  It really amazes me that so many people care enough to make these efforts. I am humbled by the awesome people I know. All the well wishes and positive thoughts are so enjoyable to read!

Just a reminder - no flowers but cards are welcome - I tape them up in his room :-)

Waiting

We are just waiting.  We've seen the anesthesiologist.  I was quick to ask if he was a cardiac anesthesiologist and he is.  Carlos has been having some trouble with a swollen, very painful right ankle, not related to the balloon pump....possibly gout?  I've suspected it for some time due to the occasional toe pain he has and several risk factors.

They did xrays....because someone came in and hit with a bat when no one was looking?  I'm pretty sure he didn't fracture it otherwise during the course of this bedrest.  They are having a rhuematologist come take a look at some point.  I figure once surgery is over, he won't notice the ankle pain :p

More later...