Fistula at Home

May 5

This was induction day! We didn’t need it though becuase Kiyah came on her own but I urge you all to go eat tacos and celebrate her (if you need an excuse)!

This cancer/dialysis is hard. Have I ever stated that?

I feel like yesterday was over emotional. We have been trying to get UofM to do an ultrasound referral for the fluid in his gut area to see if a procedure to drain it will help but its so hard to find someone who will do it and will help you. Also the dialysis center suggested that maybe his amonia levels could be high (since his liver is now affected) but they can’t pull a lab without an order and nephrology won’t manage the result. So we needed oncology to order it. I did finally get to talk to the doctor…..after portal messages and calling the cancer center and she told me we don’t need an ammonia lab and that procedure will make his blood pressure drop so she doesn’t want to do it. She’s very short with me and frustrated that it was put on her to order the ultrasound. (in a nutshell). Overall Mark has not been feeling well and sleeping awful and so during the day he sleeps a ton and dreams a ton and sometimes, because he is in a sleepy stupor, mixes up what he is dreaming and what is real (I think I mentioned this) and it can be comical but since he hasn’t been feeling well his overall demeanor is just different. We came home from dialysis yesterday and stopped to get lunch because two of Mark’s friends were at the house to visit. It was a beautiful day and Mark was eager to sit in the sun but as soon as we got home he felt nauseous. He tried to enjoy the company but was falling asleep and then he needed to vomit. He had pain in his gut and in his back, not just that nausiated feeling. This went on until 7pm and sometimes it just left him so weak I had to help him get up. Needless to say, his lunch date was cut short and I didn’t make it to the kids meet. This is when I start to worry. Why is he feeling so bad? Is there something I can do? Should I be overly concerned? I did speak with our patient advocate and she is going to help me get the tests done that we need. In fact, I went through Mark’s PCP and it was no problem at all to request it. Getting in is another story.

Mark was up all night. Chair-walking-bed-back to chair. He says he just doesn’t feel well. I spent some time researching oncologist in Michigan. Maybe we can get one closer to home that has better “bed side manner” or that gels with us better. She did tell us to go off the chemotherapy pill for a week and see how he feels. He’s hungry and needs to eat but is thirsty too however, drinking liquids bloats him. Everything is a catch 22 and it stinks.

Today was our first day at home with needles and I couldn’t get the top one. Our nurse was here and she helped me but I didn’t officially do it on my own so it makes me nervous for tomorrow. I was getting all sweaty and anxious/nervouse trying to get that darn needle to find its track. After she left, of course, the machine was beeping…not liking arterial pressures etc and I’m new at needles so trouble shooting is a whole new ball game. I was able to get his arm on its side and that seemed to bring the pressures where they need to be as well as running the machine at a slower rate. So today will take longer but at least nothing is screaming at me.

Baby Kiyah is doing well. Her cord fell off already! Aly went to visit her today so maybe she will get me some new photos. I’m thankful for the sun and warmer weather and I’m gearing up mentally to get the garage in order and possible get a dumpster…I’m at that point. First a few trips to the Goodwill or Love Inc are in order. I hate to throw out useful things. We are planting grass and so hopefully the lawn will be a bit greener this spring. So much to do in the next month! I need a dress for Karson’s wedding!! I need a cleared out space for Aly’s open house. Cora comes home on Saturday and I’m excited about that. I was hoping to have more things ready before she got here but maybe with her home I can actually do that.

Later Gator.