Is My World Tilting?


I’m in bed.

 

Not because I WANT to be but because every time I get up, things tend to tilt…. like me, for instance.

 

It all started when I went for my sleep study on Tuesday. I slept fitfully, especially after they put the mask on me. When I woke up and sat up, I was disoriented. Went to shower and almost fell twice. The dizziness got worse and worse till I laid back down. The technician came in and asked if I was ok. I said no and described what was happening. The nurse came in and they decided to send me to the ER.

They couldn’t find anything except a possible previous bleed. Meaning that sometime in the past few months, I had a stroke. They sent me home with Valium and antivert which doesn’t seem to be helping.

 

I have an appointment on Tuesday and I’ll be talking to the doctor then about this crap. I can’t get out of bed without help and so I lay here, feeling sorry for myself.

 

One great thing that’s come of this… Dan is now giving himself the insulin shots! ┬áStarted that while I was in the ER on Thursday, may 30. This is a huge milestone for him and I couldn’t be prouder! My little guy is growing so fast!!

 

Sean took it upon himself to write a note TELLING us that he wouldn’t be home from school Thursday. He decided to have a sleep over with his buddies. Friday we were supposed to go to an ice cream social and I almost didn’t call and remind him. What’s a mom to do when her eldest is misbehaving so much? God, he’s only 13 and already doing things like this. *sigh* and I’m too sick to discipline him properly.

Diabetic Adventures week 2-3


The past two weeks have been very busy here. With dad in and out of the hospital, Dans nutrition class was postponed the second week then last week I had a stomach virus and woke up vomiting. Had to postpone the class again. This week we will be TRYING to get to the class on Thursday, wish us luck!

Dan has been enjoying the bear he got from the local JD association. He’s been talking to and cuddling with that darling thing every night and has set up his new backpack with things he takes with him when he goes out. He said he’s going to use it for everyday things like lunch when we are gone any length of time and his belt pack for drinks and his diabetes stuff.

He’s doing well taking the shots and is in the Honeymoon stage of the disease. The nurse said we need to keep him well and see how long we can keep it up. I’m hoping he’ll stay well, I don’t know if I can handle if he gets worse at the moment. I’m trying to get him to stop testing a billion times a day, he’s going through a container of strips a week!

Speaking of testing, we’ve been going through and looking at different meters and lancing devices. Right now we are using an Accu-check Nano meter. I like it because it’s small and easy for Dan to use. There are drawbacks though. I DON’T like the amount of blood you have to use. For such a small device, one should think it would require less blood. They really should come up with a device that’s kid sized and uses a kids size drop of blood. The lancing device uses drums that hold 7 needles in it. First of all, they are VERY hard to get refills for. We’ve been waiting for the pharmacies to get them in for three weeks now! They keep saying they are on back order. When you put the drum into the device, you HAVE to make sure not to advance the slider to the next day till your ready. I messed up the first one and tried to reset it by taking it out then replacing it, ruined the whole drum! We’re using my old stand by lancette device, the pokers are MUCH easier to come by.

Uncle Jim, Mikes brother, died a week ago and according to the autopsy, he died from heart disease. We’ve decided that the boys don’t have to see the body if they don’t want to. I know it creeped me out when I saw my first one. It’s kind of odd to me, they love zombie stuff but don’t want to see a dead body. Dan said it’s because the zombies “are only a game. Jim’s dead, I KNEW him. BIIIG difference!” The funeral will be a week from today.

Yes, things just keep right on rollin. ugh


Well, Mike went back to the ER Sunday night with delirium and confusion. At one point he asked his sister what rank she was! Something is seriously wrong with my hubby but no one can seem to figure it out. This is the second episode in less than two weeks and I getting scared. He’s not the same person I married. Truthfully, I’m afraid it’s dementia or Parkinson’s.

The hospital did “routine” blood work, a ct scan of his brain and x-rayed his chest again but nothing showed. They did say his clotting was a little too fast so they put him back on the shots.

I have at least seven witnesses that have seen Mike in his “episodes”. Our therapist, Dans nurse, my brother, Sean, Dan, Mikes sister and brother-in-law and myself. The doctors and nurses at the hospital have documented it but they don’t know him like I do. I’ve been his constant companion for ten years. I think I know when there is something wrong with my husband. I think, next time, I’ll video tape him while I wait for the ambulance. That way I’ll have a recorded episode that I can take to our doctor. Where the hell is Dr. House when I need him??!!!

This whole thing, with Mike and having to give Dan shots every three hours is getting OLD, fast. I seriously don’t want to complain, I’m grateful they are both alive. It’s hard on me, emotionally, to watch the sudden deterioration of my husband and to keep Dans meds recorded and given at the right times. I’m drained, physically and emotionally. I want my husband back!!

Mike told Dan that he could give him his shots and Dan said “not the way you’ve been lately. You’ll put the needle someplace it’s not supposed to be or give me too much medicine” I know it hurt Mike but Dans right, Mike is NOT capable of giving shots.

Dan came to me, late last night and said “Thank you for being the greatest mom in the whole world. I love you, mommy”

Somehow, those words were what I needed to get me back in the swing of things. I wonder how he knew those words were needed at that moment in time.

Diabetic Adventures: week 1


First week is over and I think I’ll start posting regular updates, if only for my sanity. These are, of course, going to be a mothers perspective on the effects of JD on a family. As only a mother can do.

Week 1: We started the week out at the Barbara Davis Center for Childhood Diabetes. We met with his doctor and nurse. They gave us some information and asked if we had any questions. The doctor seems to have trouble looking me in the eyes and that, for some reason, irritates me. He’s efficient but nervous and I wonder if it’s me or just the way he is. I’ll keep an eye on him and assess him more as we go along. I DO like him, it’s just the eye thing that bothers me.

Dans nurse, Cindy, has called every day which makes me feel good because she asks about his day, gets his sugar readings, adjusts the doses that I give him and has started allowing me to “feel out” what I give him. It’s helped me by allowing me to not feel so damned helpless.

I have to admit, I’ve adjusted his meds already. When it was 3 AM and his sugar was almost 500, I gave him his insulin and made him go back to bed. I spent the next 4 hours watching him, in the darkness, sleeping. I even took his blood sugar, while he slept, just to make sure it didn’t go too low. A little trick I learned while he was in the ICU was to rub alcohol over the previous spot and the blood would come out, with a little coaxing.

We met with the nutritionist and learned, somewhat, what he can and can’t eat, how many carbs he can have and what he can have as much as he wants of. He’s being really good with it, with only a couple slips this week. We have discovered he cannot have oranges, at all, because they spike his sugar. I think we’ll leave those for when he’s having a serious low.

We met the “vampire” as Dan calls her because she took his blood again.The vampire’s a silly sort of woman, always calling him “little Bro” and “Lil man”. She’s told him she has had diabetes since she was ten too so he knows at least one grownup that’s been handling it for thirty years. He said that it makes him feel good knowing that people CAN live with this disease and DO things! I like her even though Sean said “she creeps me out” Yes, I let Sean skip school Monday and go with us, just so he could see what’s going on and be a part of this as well. He even ASKED to come!

Sean has really been a trooper this week. Asking about Dan, playing with him, watching while he takes his shots and checks his blood sugars. I’ve taught the family what to do if Dan has a crisis and collapses or has a seizure. We have special medication that he has in a red case just in case of this problem.

Sean is a bit jealous though because Dan got a new belt-pack and has so many new things. He said that he wished HE was the one sick and Dan just looked at him, smiled a sweet smile and said “Be careful what you wish for, Sean. Remember, I said the same thing back when you got asthma and look at me now. Keep saying that and you’ll get CANCER or something WORSE!”

Mike is doing his best to drive me completely insane, it seems. This week he’s done NONE of the cooking even though I’ve asked him to because it hurts me so much to stand that long. I’ve started using the crock pot more and that’s helping. Thank GOD I have a cookbook with a zillion crock pot recipes in it.

Last weekend my house was filled with my family and friends. My old friend Bobbie brought over six bags of food and two gallons of milk! Thank you Bobbie!! Lisa, whom I hadn’t seen in almost a year drove halfway across the state in the snowstorm just to take me to get some minor things from the store and, when Mike called me in a panic from the hospital, was able to give me a ride. She will never know how much I truly appreciate her and her friendship. She’s the oldest friend I have that even calls.

My mom and older brother were here as well, mom giving me support and even some much-needed cash. Thank you mom!! James, my older brother, actually came across town on the last bus, the night Dan went to the ICU and has been here since. He’s been a Godsend and I’m so blessed to have him in the position of being able to help us. One of the fantastic things about being a freelance writer, he can work from ANYWHERE!

Mike asked me, late last night, a question. He asked me:

“if the doctors had told us, with complete certainty, that Dan was going to have diabetes or any other major health issue while he was a child, would you have still given birth or would you have aborted him?”

My response, without thinking for even a moment: “Of course! Look at the incredible things we would have missed if that was the criteria for abortion! We would never have known such a wonderful, loving, little man. We would have lost out on being PARENTS for heaven’s sake! God gave us Danyl for a reason and who am I to deny GOD? Even if we HAD known, I would have given birth. I would have been ready for this eventuality and it wouldn’t have hit me so hard but I wonder if I’d been able to enjoy him as much… Perhaps I would have been too overprotective had I known. I dunno but I’m glad he’s here, aren’t you?”

He smiled and kissed me before rolling over to go to sleep “Yeah, I’m glad…. Glad he’s here and that YOU are his mother. You’re awesome and I’m so glad we’re together.”

Thank you God for my family and friends. Even with all the hardships, I couldn’t ask you for better family. Just do me a favor. Ease off on the hard stuff.

Never say “it can’t get worse”


I’ve always been a firm believer in the saying “it can always get worse” and this past week was a prime example. The past 6 days has changed our lives dramatically.

Thursday Mike started talking incoherently again and I rushed him to the hospital. Dan had been throwing up for a couple of days, sporadically, so I thought “what the hell, we’re here” and had them check him as well.

Mike was put into a room and I went back out front to see how Dan was doing. Our friend Chris had driven us and was sitting out in triage with him when I found them. I followed them to his er room only mildly concerned. I thought he had a touch of stomach flu or something minor. My mind drifted, worriedly, to his father on the other side of the ER department as I tried to wait for Dans doctor to come in. Dan and I talked about his upcoming birthday party and the gifts he’d gotten that previous afternoon. His tenth birthday marred by an ER visit and the possibility of his father going back into the hospital.

I drifted between the two rooms, trying to keep up to the minute with them both while worrying about Sean who was supposed to be getting home from school within the hour. I called Chris and asked him to come get the keys to the apartment and wait till Sean got home. It was 2:15 PM.

At 4, the doctor for Mike came in and told me they would be admitting my husband. They had found clots in his lungs and they were concerned that he would have more problems if they didn’t do something soon, medication wise. I looked at Dan after the doctor left and he looked so bad. His lips were chapping quickly and he kept saying he was so thirsty. He asked them for a Popsicle and the nurse brought him one.

At 5:15, Dans doctor came in with three others and I knew the news was grave. I steeled myself for news of Mike. The nurse did a finger stick while the doctor explained to Dan and I that he was exceptionally ill. At one point the nurse spoke “545” and my heart froze. The doctor turned to me, her face grim as she spoke. They had to take Dan to another hospitals ICU. The one we were at had no room.

Everything just went numb. I looked at Dans face and swallowed hard, tears welling up in my eyes. He smiled a little painfully and said “happy freakin birthday, huh mom?” I took a deep breath and shut down my emotions somehow, though I felt like my world was coming apart at the seams.

After the dr left, I went to tell my husband, who was actually looking a little better. His worry was evident the moment I told him what was happening and I broke down, allowing myself a quick cry before heading back to my son. They were waiting for a bed to open up for my husband before taking him upstairs.

When I got back to Dans side, he was complaining about his lips hurting. They were horribly chapped and getting worse, it seemed, by the minute. I noticed they had opened the IV to full and had brought an insulin pump into the room while I was gone. Dans hands were like ice as I took them in mine and talked to him. I got him a warm blanket and wet a paper towel for his lips, fighting fears I’d not had in many years.

For the second time in less than a month, I began to pray. Silently, while Dan rested, I prayed for help. I knew, from the doctor, that he was really sick and I just couldn’t do everything asked of me without SOMETHING. I was still afraid I’d lose Mike and now they were talking about ICU for my baby.

I cursed inwardly, growing more anxious waiting for the ambulance. I looked at the clock every five seconds, I think. By 6 PM, the ambulance was there for Dan and they took him in to see his father before we left. I had no clue if I’d ever see my husband again but I had to go with our son. I kissed him and told him to get better then followed the ambulance techs out of the hospital.

They were putting Dan in the back when I noticed that the day had turned to night. I climbed into the front of the ambulance and waited while they got Dan situated and we headed toward Childrens Hospital, across town. I made minor small talk with the driver, about what I don’t remember. Sometime during the ride I called my sister and told her what was happening.

Before I knew it, we were at the hospital and going inside their ER. I noticed, right away, that something had been added to my sons IV. They had a different pump on him I’d never before seen and I asked what it was. They told me it was a temporary insulin pump and that they could add other things to it as necessary. We got into the room and, after the initial flurry of activity, were told we had to wait for the ICU bed.

During a moment of quiet, Dan broke down and asked me if he was going to die. He was so scared!I took him in my arms and I told him that he wasn’t going to die, that he COULDN’T because I said so. What else was I supposed to say? The doctor had already expressed her amazement at him still being awake.

“I’ve never seen someone so sick NOT in a coma”

After moving up to ICU, they told me what exactly was wrong with him. Ketoacidosis, a life threatening diabetic condition. With that one word, I knew our lives were changed. My baby is diabetic.

Stage 1 juvenile diabetes. I’d heard about it, from my childhood when my cousin was diagnosed with it. I’ve walked for a cure, donated time and money for a cure but NEVER thought it would touch my life so personally. Now it’s here and, damnit it’s not fair.

Ugh, before I start ranting, which I’m sure I will do soon enough, I’ll finish with some good news

Mike, my dear, sweet husband, is home and resting. They have him on meds to thin the blood and get rid of the clots. He’s adjusting to not being able to play Superman anymore. He keeps telling me how strong I am.

I wish I COULD break down. I’M the only one that can take care of the shots since Mike’s blind. Dan needs mommy strong but GOD if they could see how truly terrified I am and how bad I wish I COULD be the weak one…

Dan and I, along with Sean (who I allowed to skip school) went for our second of many visits to the Barbara Davis Center for Childhood on Monday. I’m so grateful for these wonderful people! They have been so patient and understanding with all my questions. Thank you, Dr. Wadwa for being there for Dan. You are a Godsend!