Archive for September, 2012

Infection / Fluid Buildup

Hi all, how are you doing. Good here.  Just got in from taking Jim back to Tufts.  Hopefully, this will be a quick visit.  They were watching a pocket of fluid in his abdominal and apparently it got larger.  They want to drain it because they are thinking this might in fact be the source of his infection!!  Let’s do this!  Tap that pool and let’s get rid of this infection!!

Thats it for now. Will write more as soon as I know more.

Lots of love, Cheryl

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Hi there – Last night I got home from work and thought Jim looked a little down while he was sitting on the sofa.  So I went in and sat next to  him and did something I haven’t done enough of lately…  I moved his LVAD controller out of the way and sat next to him putting my head on his shoulder and snuggled…  He said, “this is nice!”  Then he said, “I miss this…”  Then we just stayed there for a few minutes in complete silence…  My back was barking because it was a bit of an odd twist but I didn’t care.  It was nice to snuggle.  Then I heard it…  The quiet hum of Jim’s LVAD.  Quietly, diligently doing it’s job keeping blood moving throughout his body.  In the hospital they had put a stethoscope to Jim’s chest so I could hear the hum of the LVAD but for some reason I couldn’t hear it at the time…    Now I could hear it perfectly…   

Jim is doing extremely well.  We did so much walking this weekend and I’m so proud of him because he really pushed himself by opting to walk up hills instead of waiting for me to go get the car. 

I actually did some sewing this weekend.  I haven’t sewn in over two years.  It felt good to finally use the sewing room – I mean studio!!  I was told I don’t have a sewing room, I have a studio – that sounds much better.  I made Jim a new strap for the bag that holds his LVAD controller out of a beautiful Japanese fabric with dragons on it.  We both love dragons.  Next, and I’m embarrassed about this so please don’t tell anyone – OK.  There was a point in time where things got a bit oh let’s call it scary, and while I was at the hospital, it just hit me that I never made our wedding quilt.  On our wedding day, we had asked our guests to sign 3-inch squares of fabric and some people got very creative!  I really do not consider myself a procrastinator because typically if I want to get something done, I get it done and I always meet deadlines…   However, we’ve been married 7 years now…  If I had to give you an excuse, I could say that life gets in the way (I am dealing with some chronic issues of my own) or you always think there is plenty of  time, but mostly, I think it’s because I have a tendency to dream up these very complicated ideas and end up overwhelming myself and then put the project off to the side.  The feeling I had when I remembered those blocks was completely overwhelming – instant tears – almost like I failed-type of feeling.  I promised myself that as soon as possible that wedding quilt would be my priority…  and more importantly, that I would keep it simple.  

I hear you laughing… 

So, I went to my favorite quilt shop, Cambridge Quilts (www.cambridgequilts.com) and purchased a set of 2 1/2 inch strips in beautiful pinks /wine Batiks (to match the bedroom) and will just sew strips around each square.  I’ve got to be me though – I will take a couple and by a couple I mean probably five or six wedding photos and transfer them to fabric to make them part of the quilt.

Jim had an appointment at Tufts yesterday (Monday).  They are weekly now and unfortunately he still has an infection at the driveline entry point (where the power cord comes out of his belly).  We are waiting for the results of a cat scan to see where the infection stands at this point.  It’s disappointing, not because that means we are still doing daily dressing changes and antibiotic infusions two times a day, but also because the longer he has this infection, the longer he’s off the transplant list.  We have got to get rid of this infection!!  They changed the daily dressing change protocol – now they want us to do a saline wrap around the driveline.  Hopefully, this will help…  Seriously, we need to get rid of this infection.  I’m tired of worrying about it…  Other than that the appointment went fine.  They do want to get a base line on his hearing now because apparently being on the vancomycin IV long term can cause hearing issues…  Ugh!!  I’ll have to google the side effects but not right now.  Not in the mood… 

Kendall…  She is such a cutie…    NEWSFLASH – I bought her a bed at the Christmas Tree Shop and I think she likes it!!  Yes, it’s a dog bed – want to make something of it??   I think she looks much more comfortable…

She almost killed Jim this past weekend…  I believe I told you my sewing room (oops studio) was finally set up.  Well, first she got into my pins…  I found them in a heap on the floor in the studio and then also found them downstairs in the dining room… and the living room…?  I can’t believe she is running around the house with pins in her mouth!!  I walked around the house picking up pins wherever I found them and put them away…  In a drawer…  I was lying in bed on Sunday just kinda dozing and I hear Jim coming up the stairs.  He’s coming up slower than he usually does and he’s huffing and puffing so I’m listening concerned that he might be a bit more distressed than usual.  It sounds like he’s at the top of the stairs huffing and puffing for a few minutes now so I yell out “you OK?”  All he says is “do you know what YOUR cat got into?”  Then nothing…  Leaving me to fill in the blank, and I did notice the “YOUR cat” comment…  I start wondering if maybe she got into the crockpot that I had started at 4:00 a.m. – she was kinda peeved that I didn’t feed her at that time or perhaps she turned a roll of paper towels into a mountain of confetti (and we were so close to getting past that stage of kittendom!!).  No, apparently, Kendall got to the spool of thread that was on my sewing machine and she just grabbed it and ran down the stairs, through the dining room, around the table and the dining room chairs.  I’m surprised I didn’t hear the WHIZZZZZZ of  the thread coming off the spool while she was running down the stairs…  Jim is now trying to get into the kitchen from the living room and gets caught up in all this thread in the dining room.  He starts to gather it up from around the dining room chairs, the dining room table, and into the kitchen where Kendall is sitting just looking at him with the thread in her mouth.  He didn’t want to yank it out for fear it might be wrapped around one of her toofies but when he pulled it out she then proceeded to chase him up the stairs trying to reclaim it.  There was quite a birds nest in his hand when he was done.  The thread is now in the same drawer as the pins…   I was telling a friend from work about this, and she said she started to picture the scene in Entrapment when Catherine Zita Jones has to dodge all the laser beams.  Too funny!! 

Well, the doctor called.  The results of the cat scan are in and it seems they want to re-admit Jim sometime tomorrow as a pocket of fluid that they were watching has gotten larger so they want to drain it…  I am hoping it’s an easy tap versus using one of those garden hoses they used before…  Sigh…  Life with an LVAD…  I’ll keep you guys posted.

Thanks for taking time out to read this – I know it was a rather long one.  Lots of Love!!  Cheryl

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Hi All,

Things are going well. Jim is still home, and we are getting used to our new routine that includes two infusions and a dressing change every day. I find the dressing change nerve-wracking – more so than the infusion believe it or not, and I really wasn’t thrilled with giving him an infusion – I am injecting him with stuff that is going right into his veins!! Took me awhile to deal with that one… Now I am going back to work on Tuesday, and we’ll have to get used to another routine. It will be good to get back to work. Well not really but it sounded good, didn’t it? Even though my Mom is right next door and the visiting nurses will be coming by, I will still worry about him while I’m at work. It’s my nature to worry. 🙂

We are watching Leverage – I love that show. Kendall is blissfully sleeping here with us. Think she needs a bigger bed?? We’ve tried but she LOVES this bed that she’s had since she was 4 weeks old…


That’s it for now. Talk soon! Love, Cheryl

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