Hypoglycemia is an insatiable monster

Craig has been struggling to keep up his blood sugars for the last 5 months. We have met with many doctors and tried different medicines to try to help him. Everyone just keeps saying, "Eat more complex carbs!" So the poor guy has just been eating as often as possible but it's become hard to eat which seems impossible to say but it has become a chore.  Pop Tarts have been one of the things he's eaten a little of throughout the day and for some reason, they stay with him better than other things.  He's been eating pasta and bread and hamburgers and Lucky Charms.  They are a favorite!

We went to St. George last week to the home show and Craig made his way to the homes and snacked  on Pop Tarts and candy in between.  He did ok but always felt low or high.  Finally by Saturday, he was frustrated and done.  He couldn't eat enough to keep up his blood sugars and stuffing one more thing in his mouth was impossible.  We decided to get back to SLC and find help.  Luckily our friends Doug and Heidi Brewer were with us in St George and helped us clean the condo and kept track of us on the drive home.  We got home and talked to my doctor brother and decided to go to the ER.  We were just too worried about making it through the night.  You can go to sleep and never wake up.  The pressure was too much.

We went to the U of U hospital ER about 8 pm. When we checked in his blood sugar didn't register so it was under 60. Normal blood sugar is 80-120.  They gave him a slug of D50 dextrose and it would go up for about a half hour then drop again.  He ended up getting 4 slugs of dextrose in the 4 hours he was in the ER.  The doctor there said you'd have to eat about 50 candy bars a day to keep your blood sugars up. His tumors are secreting large amounts of insulin.  He's the opposite of a diabetic which is ironic since both of his sisters are diabetic.

They transferred him to Huntsman where he was admitted.  They put him in ICU because they would need to watch his blood sugars closely.  It was about 1 in the morning by the time he was in the room and we were able to settle down.  The put him on a constant drip of 20% dextrose. They pricked his finger every hour to make sure his blood sugar was around 100.  It would drop every once in awhile throughout the night and they would have to give him a slug of 50% dextrose again.  We were going to have to keep on top of this constantly.

On Monday, we called the kids to say they should find a flight to get here ASAP.  We didn't know if he would be able to sustain his blood sugar and if other complications would come up.  Chase got in about 6:30 that night from LA and Maddie and Mitch got here about 11:30 pm from Virginia. So nice to have them all here.

On Tuesday, the doctors came in and started talking about options.  The endocrinologist team wanted to increase the diazoxide to help with his blood sugar but we didn't feel like this would be enough.  The best way to stop the insulin production is to shut down the tumors.  There are a few ways to kill the tumors:  CAP-TEM a combination chemo pill that could take awhile to work, regular intravenous chemo, or Y90: radioactive beads they place in the liver.  After many up and down days last week, he decided that the Y90 is the best course of action.  He has struggled with the benefits of treatment and whether this will make enough difference in the insulin secretion.  He will be tethered to the glucose drip no matter what happens and this will require him to stay in the hospital while he undergoes treatment.

On Friday they took him to radiology for the "mapping" of his liver.  They placed a urinary catheter and it caused Craig a lot of pain because of his enlarged prostate.  The pain got so bad that he decided  to forego the procedure and wait til next week.  It was a tough day for him and we all felt unsure what was the best way to proceed.  There were too many issues today to make it feel like a good decision.

Over the weekend Craig, the kids and I spent a lot of time talking and weighing the options.  He continued to receive the life-saving glucose but even when he went off of it to take a shower for 10 minutes his blood sugar dropped below 60 and he crashed.  They then have to give him a slug of 50% dextrose to bring it back up.  So the idea of him going home is very unlikely for quire awhile.

He decided to go ahead and try the liver mapping again today and it went much more smoothly and we are now waiting to hear if everything looks good to proceed with the radiation. We should hear about that tomorrow.  The soonest we could do the procedure is next week.  They have to bring the radioactive beads in from Boston and they cost about $18,000 per treatment.