Beautiful little moments

It is the evening of August 13, 2016, and Jay’s birthday.  I am watching him cooking in the kitchen, a beautiful little moment for us.  A sight I feared for many days, might never happen again.  It’s been a hell of a two weeks. 

The trouble started about 3 weeks ago.  Jay woke up with what looked like a fire ant bite with and a nasty red ring around it.  We now believe it was a spider bite.  The bite hurt him.  We popped it a few times over the next few days, and the pain would ease.  When he had MERCER a few years ago, (The Girls) he had a similar pimple on his arm, but no red ring. 

Jay is a medical assistant (MA) and works in a medical office.  He saw the nurse practitioner that is there at the clinic.  Both feared it might be MERCER again and he was prescribed a sulfur based antibiotic called Bactrim.  Jay took it for a week as prescribed.  The bite did not get worse, but Jay developed a fever and did not feel well.  He was tired and weak.  He had trouble getting threw a full day of work, and came home early several times that week.  I knew something was wrong.  It was not like Jay, and he should not have a fever if on antibiotics, or at least as I understood it.

I took Jay to the doctor that Friday the 5^th.  The doctors were baffled and it took them a while to figure out what was going on.  Jay’s blood pressure was in the tank.  His top number was in the 90’s, where it was usually in between 120 and 140.  He’d lost 20 pounds in two months, his sugar was over 300, and his platelets were extremely low.  We had been unable to see our regular physician, Dr. Warren, so we saw one of his buddies in the clinic.  Within a few minutes, He called Dr. Warren, and the two begin to consult, then they called in a hematologist (blood Dr).  We had no idea what was going on.  After back and forth of about 3 hours, and multiple viles of blood, Jay was admitted to the hospital.  Their guess, the antibiotics were doing this to him.

Jay would spend the next 3 nights in the hospital.  Now Jay never lets me stay overnight.  I hate it, but there is little I can do.  He is just too damn stubborn, and what’s worse, he is right.  He needs to rest, and being there will only make me worry more.  I need a mental break, and to take care of things here on the farm.  I came home and fell apart that first night.  I began to be terrified he would die while I was not there.  I begged Holda, if you take him, just let me be there when it happens.  I truly did not know if I would ever see alive again. 

That first night in the hospital, Jay’s blood pressure got to 68/41.  He was given steroids to make him better, and it worked.  He improved and his platelets came up, but the steroids kept his sugar high.  He was diagnosed with ITP (Immune Thrombocytopenic Purpura) an auto immune disease.  We were given no more information on it, then a small piece of paper with the word on it. 

Sunday afternoon, as I sat waiting for Jay to be released, we talked with the hematologist.  I mentioned to him, how red Jay was in the face, how flushed.  I said, “He only gets this way when he drinks.”  We knew he was allergic to the sulfites in wine and beer.  He used to be able to drink 3 or so beers and then turn red.  Now he does good if he can drink a half a beer.  As we talked, the Dr. began to believe, that the sulfur in the Bactrim, had done this to Jay.  That if he was not allergic to sulfur based medications, he was at least sensitive to them, and that sensitivity had at least caused this adverse reaction.  It was advised he not take sulfur based medications again.  A phone call to Jay’s mom, reviled that Jay’s grandfather PawPaw, was also allergic to sulfur based medications.  Maybe it’s a genetic thing, I am not sure.

The Dr. sent us home with a prescription for steroids, to finish up his course of treatment.  Jay was advised to not go to work for a few days.  So he rested and I tended him.  He just seemed to still be so very weak.  Little things like taking a bath, exhausted him and made him dizzy. 

He tried to go back to work on Thursday the 11^th, but his boss sent him home a few hours later.  She called the house to tell me she was sending him home, and she wanted to make sure he had made it here.  She thought he needed to see the Dr. immediately.  At the office they had tested his sugar and it was very high.  His blood pressure was 81 / over a bottom they could not hear.  We called Dr. Warren’s nurse, who advised, with a blood pressure that low, that we should go back to the hospital.  We transported Jay by ambulance, so he would be seen quicker.  I followed behind.

The ER took forever!  His blood pressure was in the mid 90’s, lower when he slept, his sugar was still high, and his fever was back.  They knew they wanted to admit him at noon, but did not find him a room until about 6.  We asked for a tray.  He is diabetic and he had not eaten since 6:30 that morning.  They did not feed him until he got in his room.  He went 12 hours without eating!!  I was soundly pissed!  Jay took it all in stride.  We were told, “Oh we ordered it, Oh we will look into it.  We have a lot of people today.”  Nothing. 

This time Jay’s platelets were good.  They admitted him for what they called dehydration and acute kidney failure.  We were told nothing else.  But we were told he would not need dialysis or a transplant, you know after I asked.  Dr.’s you understand are too busy to give us mere mortals any scraps of knowledge or information, we are left to figure all this out by ourselves.  Google really is our own friend.  Well except Dr. Warren.  He really is awesome!  He always takes his time with us, listens to us, and helps us understand what is going on.  We could not figure out why Jay was dehydrated though.  He was drinking lots of water, I made sure of it, and peeing copious amounts.  How was it possible he was so dehydrated, he was in kidney failure?

After a conversation with a friend, who works at an animal clinic of all places, she helped me understand.  The sulfur meds and steroids had damaged Jay’s kidneys.  He was drinking enough, but his kidneys could not process the liquids fast enough, and the meds were ridding his body of them too quickly.  The fever was because his body was working so hard, to try to compensate.  Jay and I talked and I told him to ask his Dr’s whether or not he should be taken off some of his meds.  We had begun to believe that because Jay had lost so much weight, his blood pressure was actually normal and the meds he was on were making them too low.  The Dr. agreed and took him off almost all his meds, and he has begun to feel much better. 

Yesterday, he looked better than he had in what seemed like forever.  When I picked him up from the hospital today, he wanted to drive, he wanted to go visit with him mom, and finally he wanted to go grocery shopping.  I was really shocked to see him have so much energy!  Then he made most of dinner.  He hadn’t done that much, in what feels like weeks!

In all this fear and anguish Jay has given me some of the most beautiful moments.  He has been a diabetic for more years then we can remember (at least 5 or so).  He has been treated with Metformin, and then a few months ago they added Invocana.  We think the Invocana helped him to lose the weight, and had a hand in the putting him in the hospital the second time.

When Jay was first diagnosed as a diabetic I tried to educate myself about all this disease, to teach him.  I told him I would go on the diabetic diet with him.  I begged and pleaded with him to check his sugar.  And Gods and Jay forgive me, even making fun of him in front of the doctors and others when they asked if he checked his sugar, trying to rattle him, or shame him into doing it.  Nothing.  For years nothing.

It’s no secret that Jay and I love food.  We own a food truck for Gods’ sake.  But even as a diabetic, having diabetics in his family, his father having kidney disease, and Momma Muriel from complications due to diabetes, Jay refused to check his sugar, or eat as he should.  Now he has never been a sweet eater, but he loves rice, gravy, and sweet tea.  When we went to see Dr. Warren’s partner, he prescribed Jay injectable insulin, and I think it kind of scared him. 

Jay came home from the first hospital stay, talking about carbs, something he NEVER did.  I even went so far as to go to library and check out a book on diabetes.  I even began to measure out our food. 

This trip in the hospital he was visited by a nutritionist.  They chatted for a long time. I was not there.  Later that day he told me he wanted to start eating better and to start walking.  I played the role of supportive wife.  I told him I would help him, do anything for him, and when I had a moment alone to myself teared up, and gave thanks to the Gods that he finally wanted to change.  That he had finally seen the light, moments I had dreamed of, dared to hope for so long ago, were finally coming true. 

As we sat at his mom’s this afternoon we talked of what to make for dinner.  He told me he wanted to go to the grocery to pick up more things for tonight, but that he wanted to take his time.  I had an idea what he meant.  In the grocery store, here was my beautiful, stubborn, incredible, husband, flipping over packages, and making choices of products based on carbs, and how many starches he could have in a meal. 

I did really good, and kept my composure.  I did not push, I let him, be him, and tried very hard not to cry at the miracle happening before me.  He got it!  After all these years, it took him getting this sick to finally get it.  I am still too stunned to understand it all.  Overwhelmed, tired, confused, ever grateful, and praying that this bubble will not burst. 

I think we just went from #Team Ilsa, to #Team Plaisance.