Blood sugar going up

This past weekend things have changed a little for the better we think.  Craig's blood sugars have been as high as 345!  He hasn't dropped below 200 all weekend.  He has been very tired all weekend and slept a lot so it could be also due to higher blood sugars.  The effects you feel for high blood sugar are a lot like the effects for low blood sugar.  He is having a harder time telling if he's low or high these days.  His abdomen still feels very distended and tender.

Today we emailed with Dr. Weis's nurse and she sent an order through to lower the delivery rate on the pump to 60 mLs per hour vs. 70 mLs per hour.  We'll see what that does.  We did try stopping the pump on Sunday for about an hour and Craig's blood sugar only dropped about 60 points.  That did cause the line to be a little sluggish because the dextrose is very sugary.  We have to be very careful in not reducing the dextrose too much as he drops fast when it is going down.  The pharmacy is sending out a new pump with the correct rate of delivery.  We can't change the rate on the pump ourselves and I guess they thought that would be easier than having a nurse come out.  When we change the bag tonight we'll hook up the new pump and see how it goes.  Wish us luck!

The other thing that happened last Friday is we showed up for the MRI and they didn't know what to do with his pump.  It can't go in the MRI because it has metal on it.  We talked about extending the line about 30 feet to leave the pump outside the door.  Craig couldn't be off it for the 45 minute MRI.  So he didn't get an MRI.  I'm really surprised they were so baffled by the pump.  I would think lots of MRIs are done on people with some sort of pump hooked up.  We'll see what the intervention radiologist wants to do.  They want to see the status of the tumors since it's been about 4 weeks since the last Y90 treatment to his liver.  We just want the tumors to stop producing so much insulin so he doesn't have to carry around a back pack of dextrose!  Maybe we're seeing some help with that after this weekend.

Catching up with the Joneses!

This past week Craig has been feeling a little better, less abdominal pain which is nice.  His energy level is still pretty low but he'll get stronger with time.  His blood sugars have stayed pretty steady, not really going up too much but did drop a little a few times this week.  The glucose drip is still going strong and Craig has been unpicking the side seams on his shirts to accommodate his PICC line.

We appreciate everyone who stops by to say hi and sends texts or emails.  Our good friend Jason and his son Jake have been mowing the lawn which is so very nice of them!  We are very lucky to have so many family members and friends who love us and show concern for us every day.  We love you all!

Speaking of family...Craig's Jones cousins came to say "hi" on Friday night.  Richard and Shelli, Stanton and Nancy, and Marshall and Cindy from California.  It was so much fun to be together and catch up.  Thanks for taking the time to stop by.  We love you guys!  And thanks for the pie!

Nausea

This past week Craig has been feeling more nausea and his abdomen feels very distended and tight.  We know there is inflammation with the radiation so that probably accounts for the tightness. Nausea is another side effect of the radiation.  He's been laying pretty low all week and sleeping quite a bit.  He did go to Dr Weis on Wed. for a check-in.  They drew blood on him from the extra line on his pic line and the numbers were way off.  Blood sugars were 1600!  I think the nurse who was drawing blood didn't clamp the dextrose line so all the labs were messed up.  The next day the home nurse drew the blood properly and the numbers were more normal.  His liver is holding pretty well with all this invasion with radiation.  We will wait a month and scan him to see what everything looks like before we do the 3rd treatment.  We need to make sure the liver is still functioning properly.

Our good friend, Dave O'Leary, invited us to the screening of "Le Ride" produced and starred in by Phil Keoghan (host of The Amazing Race).  It was a fundraiser for Huntsman Cancer Hospital.  Phil and a friend actually recreated the 1928 Tour de France riding a single speed bike over 3000 miles around the perimeter of France.  They made this documentary and are showing it in 12 cities across the country as fundraisers for local charities.  If you get a chance to see it, please do.  It was "amazing"!  Dave and his son Connor actually won the Amazing Race a few years ago.  Here's Craig holding his glucose "purse" pump.  I was happy he felt well enough to go out for a few hours.

Doing well at home!

Craig is doing very well at home.  We've got the dextrose bag changing procedure down.  We have to change the bag of sugar water every 24 hours and clean out his lines with saline and reset the pump to do it's job.  The nurse came over the weekend so we could change his pic line again (once a week) and she said I was doing ok on the bag changing procedure so she'll just need to come back next Sunday.  Craig did have a mishap with his bag in the middle of the night Fri. night.  He was getting something to eat and set the bag down on the counter and turned away from it and it fell to the ground and started making all sorts of beeps and noises.  He woke me up and we tried to reset it but we couldn't get it to work again and nothing was pumping into him.  We called the 24 hour homecare helpline and I told her he couldn't be without this or "he will die"!  I was a little panicked at the time! She had the pharmacist call us back and we tried a few things to fix it but it wouldn't stop beeping and telling us it had a problem with the cassette that fits on the bottom of the pump. Finally we decided to put a whole new bag on with a new cassette and it worked again!  That was a test of my skills, since it was 5 in the morning and I wasn't fully awake!  Since then he's been doing well and his blood sugar has stayed up all weekend!  It's definitely trending up which is a good sign the radiation is working to shut down the insulin producing tumors a little.  Hopefully we will slowly be able to reduce the glucose going into him but not quite yet.  We see Dr. Weis this week so we'll get an update on labs, etc.  Life is going pretty well and we hope it will get better for Craig soon.

Here's Craig modeling his latest outfit.  It's tough to have sleeves and an IV in your arm.  He squeezes the bag through the arm hole and it works!  He's definitely a fashion statement!

Maddie and Mitch in Paris!  We love living vicariously through them.

2nd radioembolization done!

Craig just got back after a 4 hour procedure placing more radioactive beads in the left side of his liver. This is the 2nd of 3 planned procedures. He always comes back in pain because he has to lay straight on his back for 4 hours after the procedure. They gave him dilaudid and it makes everything feel much better!  He's snoozing now. It's a little lonelier here this time without my awesome kids. His blood sugar did drop twice today below 60 so he's had 2 infusions of extra D50 to keep it up. He hasn't had any food either but they did increase his regular glucose drip to 100 mls per hour from 70. His body doesn't know what it's doing.  Today he'll just be sleeping and staying out of pain.  I think he'll be here at least a few days.

Back in the hospital

Craig's back in the hospital for another procedure tomorrow morning. They had him check in tonight to be ready for the next Y90 treatment at 8 in the morning. He wasn't too excited to come up here but now that he's here he said it feels way too comfortable. All the nurses and aides were happy to see him and greeted him as we walked in. The white board in his room had a greeting from one of the aides "Taylor ❤s You!"  It was pretty cute.

The weekend

Well, it's Sunday night and we've made it a full 2 days at home!  The first night was a little rocky.  The patient (Craig) was not as compliant as he'd been at the hospital!  He wanted to do things his way and of course I thought we should do it the way I had set up!  When it was midnight and I wanted to go to sleep, he was ready to stay up for awhile (he'd had a few naps!)  I felt responsible for his well-being and wanted him to just go to sleep!  We were up and down all night and it was stressful.  Chase did his best to keep everyone sane!

There is lots of stuff to figure out quickly.  6 shots a day of octreotide.  I'm ok at giving the shots but I'm not the greatest at filling the syringes.  I'm getting better but keeping pressure in the syringe while adding medicine from a 2nd vial is tricky.  We had a nurse come each day at 2 pm to help change the bag of dextrose in his pack.  This requires flushing his lines to keep them clean and adding heparin to the extra line to keep clots from forming.  Lots of alcohol wipes and caps and connecting lines and keeping them sterile all the way.  Respect your nurses!  They go through A LOT of training and know a lot of things!  Our home nurse was very patient and helpful in showing us what to do and the reasons for doing everything.

On Saturday morning when we checked his blood sugar it was 78.  That was scary because in the hospital they would be giving him an extra shot of D50 if it dropped below 100.  So we had to quickly have him drink juice and eat waffles with syrup to bring it up.  His steady blood sugars of the last few days were not going to be consistent.  Who knows if anything is really helping to lower the insulin production?

The highlight of Saturday was hearing from Maddie and Mitch in London!  They arrived Saturday morning and sent pictures of their travels the first few days.  Here they are in front of Buckingham Palace.  We miss them so much but are so excited for their adventures in Europe!

Chase went back to LA tonight and we will definitely miss him around the house.  He has been a huge help and fun to have around for comedy and emotional support (for his mom)!  Chase was very devoted to us and spent most of his time at the hospital with us.  Last night all his friends came over to watch the NCAA games with Craig and it was so much fun to have all "our boys" here.  They  watched Wallace and Gromit shows too for a blast from the past.  Craig loved having them here.  Thanks Chase for taking good care of both of us.  You will be missed!

By Sunday night we've had many visitors and lots of lovely food brought over.  Thank you to everyone we know who are taking such good care of us.  We are feeling very loved and supported.