Hi All – Happy New Year’s everyone!! OK let’s just say I started this post a long time ago…
Last we spoke Jim had just gotten out of the hospital after having been sent home on the wrong medication regimen and getting seriously ill and dehydrated. That mystery was solved by the Tufts Infectious Disease team (they are part of the Cardiac Transplantation team).
I would say not even five days after Jim’s discharge, I get a call at work from his visiting nurse. She said (and these are her exact words) – “Jim went BUMPITY BUMP BUMP BUMP down the stairs.”
O. M. G!!!
He managed to get up off the floor and open the door to let her in, and then collapsed in the living room – up against the entertainment center. She told me that she wanted to call an ambulance, but that Jim felt he didn’t need medical assistance. She said that he was denying the fact that he had hit his head, but she could clearly see a bruise / scrape developing over his left eye.
I asked her to please call an ambulance and have them take him right into Tufts, and that I would meet him there…
When I got there Jim was in the Emergency Room, and he was being examined by one of the doctors. I asked him what happened with the LVAD Controller, and he said that it had gone “BUMPITY BUMP BUMP BUMP” down the stairs so they had the LVAD Coordinator come in and give the LVAD Controller a once over. Thank goodness all was fine but I laughed to myself because I wondered if he knew that the visiting nurse said the same exact thing about him.
I think Jim was more embarrassed about this incident than anything else. He said he was just in a rush to get down the stairs to let the visiting nurse in, and he missed one of the steps. The team at Tufts thought it might have been something else.
Whenever you or I stand up quickly from a seated position gravity will take over and all our blood will drain but then recirculate. It happens pretty quickly – sometimes you might get a little lightheaded. Now imagine a man-made motor in your heart going at a constant rate. When gravity takes over and blood leaves the heart and that motor is still going there is a suction event that happens. There is a word for it, but because I’m an airhead I don’t remember it at this point in time. I’ll ask the team next time I see them… Anyways, they think that might be why he had fallen down the stairs.
Thankfully, everything was fine. Tufts did a cat scan to ensure that there were no bleeds from the fall, and they kept Jim for a few days for observation. He had some serious bruises though – pretty amazing ones…
This is where he didn’t hit his head…
Here is his arm – probably trying to save himself…
Here is a picture of his back… YEEIKES!! – You can see the line from where he landed on the edge of the step… OUCH!!
The Coumadin makes for some impressive bruising, huh? While it literally would hurt me to look at the bruises, Jim assured me that they didn’t hurt at all. He indicated if anything, the bruise on his arm hurt the most but said it was more tightness than actual pain… When he was discharged, the nurses said next time he wants to visit, he just needs to stop by – no need to stage accidents or throw himself down the stairs…
After that things were pretty uneventful for a couple of weeks. We made it through Thanksgiving and were coming up to the Holidays, and I just started wishing for an uneventful Holiday. We got the tree up and decorated.
We usually do this the weekend after Thanksgiving. It takes a couple of days to get it up and running. One day the tree and the lights go up. The second day is spent decorating and cleaning up. This tree is rather old (Translation: it does not come pre-lit!!) but that’s fine because I haven’t found a pre-lit tree that has purple and white lights on it.
If you do find one, could you let me know? Thanks – appreciate it.
Until then, we use this tree. We do get lots of compliments on it. I was nervous about putting the tree up this year because Kendall was so awful with it last year. She would gnaw on the wires, chew on the branches and send ornaments sailing through the air. This year she didn’t seem “as” interested in it. She still chewed on some branches (only to throw up fake needles) but not nearly as much as she had done last year. She does like the skirt. Must be comfortable. I couldn’t locate it last year because I had used it as padding when packing up boxes but was so excited to find it for this year. She would curl up under the tree and nap. Just like Spooky used to do. The funny thing is as a quilter, I made just about everyone and their Uncle a quilted Christmas Tree skirt but us – we have one from Sears Roebuck…
Yes, they were still Sears Roebuck at the time!!
One of these days I’ll make us a proper, quilted Christmas tree skirt, but I really like this one – it’s a purple Santa Coat.
See the flat screen TV in the photo to the left there? See how it’s on an entertainment center? Kendall is such a nut case… Out of the blue she decides to leap over it in a single bound. Probably didn’t realize that it’s straight down the other side – there was no shelf-i-poo of any kind to land on…
In order to get her out from behind it, I had to move the entertainment center (heavy, thank you very much), and she walks out a complete puff-ball.
I don’t think she will do that again…
Nov. 19th – I find out that for some reason at work I was switched to a “clocker”. Someone who has to hit a time clock when they enter or leave the building… I cannot input time into a timesheet anymore. I called to let someone know of the issue and they inform me that yes, as of 11/19 – I am a clocker and so will everyone else in the building. I assured them that if that were really the case, some type of an announcement would have gone out. I escalate my problem and someone assures me that they are looking into this – apparently, I am not the only person who got switched. More to come on this…
November 30th – one of Jim’s antibiotics is stopped. Jim questioned this with the infusion services company because we are at LVAD clinic every week and no one from the Infectious Disease team indicated that they were stopping the antibiotic. The infusion company indicates that they will follow-up with Tufts and get back to us as soon as possible.
December 4th – Jim was complaining that he was freezing. He takes Coumadin and that’s one of the side effects – he’s always freezing. We could have the heat set to 72, and he would still be freezing. He said he was going to go to bed for a little bit and see if he can get warmed up. I hear him get to the top of the stairs and then get what’s known as a case of the rigors. Rigor is when you are shaking uncontrollably. We get him into bed. He’s on top of a heated mattress pad and under a sheet, a blanket, a quilt, and an electric blanket that is on high.
We are careful to move his LVAD controller off to the side – high temps are not good for that thing.
I took him temp at this point but it was normal. He is shaking so hard that when I sat on the bed next to him for a little bit, I actually got physically nauseous! He finally warms up and falls asleep for a couple of hours.
When he woke up we took his temp again – 102.6.
We question if it’s due to the fact that he was bundled up with so many heated elements…
However… There are two things that you are always on the look-out for when you have an LVAD. One, signs of an infection and two, signs of clotting…
We really should call the team. I gave Jim some Tylenol, and he gave them a call, and as we figured they wanted to see him right away. I was a little surprised at the level of urgency though when we got there but figured it was just serious enough.
Then they start talking about his 105 fever!! Jim and I were like, huh?? Whenever Jim comes into the hospital, an email blast goes out to the entire team. They also put a bulletin notice on the billboard on Rte. 93S.
Someone wrote that he was coming in with a 105 fever… Oops…
The Tylenol took care of his fever and it never came back but it was at this point that the Infectious Disease team became aware that one his antibiotics were stopped on November 30th and to say that they were upset would be an understatement… Suffice to say it wasn’t supposed to be stopped and they were worried that that was the reason he spiked a fever. They didn’t think it was from being under 15 heat sources.
His antibiotics were restarted immediately.
It’s now coming up to the Holiday’s, and I’m happy to report that my payroll issue had been fixed… They didn’t offer an explanation of what had happened and I didn’t ask – I was just thankful that my poor boss (who was also trying to plan her wedding!!) didn’t have to manually email my hours to the Payroll people each week. What a nightmare.
I didn’t get a paycheck when we had first found this out so in a panic, I had put my cleaning people on hold.
It’s now the Holiday’s… I get my wish, and we have a beautiful and uneventful Holiday. I had some time off from work and enjoyed the Christmas and New Year’s break with family. Christmas Eve Jim and I took his Dad into Boston for dinner. We found a restaurant that had a New Year’s Eve special dinner menu. I decided that since I had a whole new batch of vacation days for 2014, I would take the two days after New Year’s off as well and make it an entire week off.
I had made a quilt for my brother for Christmas, and he loved it when he opened it Christmas Day. I forgot to take pictures of him opening it because I’m a dingbat like that, but here’s a picture of the quilt…
This was a Block of the Month quilt done through Cambridge Quilts. I jokingly said to Jim with the amount of work that went into this quilt, it should have been King-sized!! See all those squares and triangles!!
January 2nd – Jim is complaining that he’s extremely lightheaded and dizzy.
These are signs that his potassium is too low and is typically when he can pass out. I am on guard… Sure enough he passes out early in the morning and ends up in the Emergency Room at Tufts with a potassium reading of 2.1. It’s supposed to be between 4-5.
Nothing like having two EMTs, two firemen and a policeman in your house to make you wish you NEVER put your cleaners on hold!!!
Whoa, where did that come from?
We always try to keep a sense of humor about things. Poor Jim is lying in the emergency room at Tufts Medical Center. It’s snowing like crazy outside. Jim is trying to sleep, but I poked him and said – “Hey!!! At least the deductible for 2014 has been met!!”
He turned his head towards me, opened his eyes and just sort of glared at me.
Well I thought it was funny… I guess he wasn’t feeling it…
He wasn’t there very long. They got his potassium back up to where it should be and discharged him a few days later.
All this time Jim has been on inactive status on the Transplant list. I thought it was because he really hasn’t been stable in a long time and you need to be healthy enough for the surgery. It turns out it’s because of the infections he has. Originally, after the LVAD surgery, it was the infection keeping him at Status 1A so we were very confused. Also, every single test that they do for an infection comes back negative (thank goodness – not complaining). If they are coming back negative though, why is he taking four antibiotics a day?
Taking all those meds isn’t a good thing either!!
Jim starts to ask questions and there is a Meeting of the Minds at Tufts. They decide to do an unconventional experiment.
Wednesday, January 8th – Jim calls me and tells me about an idea they proposed to him. They want to bring him into Tufts for seven full days and stop all antibiotics and see if anything rears its ugly head.
They feel he’s in limbo right now and want to move him forward to active status. If he has no infection, he can go home without antibiotics and go on the transplant list. If he does have one, they need to find the source of the infection and deal with it.
Jim and I were almost positive that he would end up popping a high fever and end up probably needing surgery of some kind to get rid of an infection.
Thankfully, four days later I get a call to say they felt he can go home. His stay (we started calling it a Med Spa stay) couldn’t have gone any better…. After four full days (so much for seven full days) his fever was normal and his white blood cell count actually dropped while he was in there. He really made the best of it too. They didn’t have him hooked up to anything so he did as much walking as he could and found a set of stairs to use as a workout as well.
His PICC line is gone and for now he is taking oral antibiotics and the team is going to have a discussion tomorrow (January 21st) about getting him back to active status. The question is whether or not he’ll be Status 1a or Status 1b. To be determined.
In order to keep my sanity I have been trying to get as much sewing in as possible.
Well, you knew it wasn’t going to be housecleaning!!
I’m actually working on a beautiful Christmas wall-hanging.
No pressure at all, and I’ll be way ahead of the game for next year!!
Here are some pictures of the star blocks that I’m working on…
I have all but four done and I’m hoping to get them done soon…
Thursday, January 23rd – We get the call from Tufts. Jim has been approved to go back to active status on the heart transplant list and he is listed as Status 1a.
I think that’s all I have to report to date – that was a lot!!
I hope that everyone is doing well!!
Take care and lots of love!!