Another Day...Another Diagnosis

In December J.J. had his routine blood screenings. The Celiacs panel came back elevated.  We were advised to wait 3-4 months and recheck.  At the recheck his numbers doubled.   We were then referred to the pediatric gastroenterology clinic.  After a two month wait to get into that clinic, J.J. was scheduled for an endoscopy.

Today was the endoscopy. TODAY....after a half a year of wondering..... today..... we got the answer. Today we saw the inside of J.J.'s small intestine.  Today we saw the damage.  Today we heard the words.... again.... "I'm sorry, he has _____."  Today I felt that sinking feeling... I had held out hope that maybe it would be different for him, but deep down knew. Today I held back tears.  Today we all put on brave faces....and stepped...into...another lifestyle change.  Today we bought new foods, new appliances, new kitchen items.  Today he ate noodles...from Noodles... and pizza....from Pizza Hut....just because.  Today I think about cross-contamination.  Today J.J. hangs out with his Dad and learns how to change the brake pads on a car, and pick up round bails for the horses.  Today J.J. is still a kid.

TODAY...

I thanked God....

He loves J.J....infinitely more than I do.

His mercies...new every morning!

His provision

Living in America

The doctor's skilled hands and knowledge
Girls holding down the fort

BG 130 before surgery

BG 90 after

BG coming down from 600's after a pump malfunction last night!

J.J.'s concern that his food will be too costly

          ....his tender spirit

J.J....not much pain

Jason's job

Jason taking us and being with us 

Friends and family praying

Life ..it is..more. than. food!!

Yes....today I am sad....but today...I AM THANKFUL!!!

Another Day....another diagnosis.....

Paranoid....

Main Entry: paranoid
1 : characterized by or resembling paranoia
2 : characterized by suspiciousness, persecutory trends, or megalomania
3 : extremely fearful


Yes, I've been characterized by #3 the past oh, I don't know...4 months!! What am I extremely fearful you ask? J.J. getting sick. Believe me I know it will have to happen. J.J. will get sick one of these days.

Those that may tend to look down on my paranoia must understand one thing......sickness has a whole new meaning with diabetes on board!!!

If you don't believe me please read about Katie's description of a stomach bug her son got this week. In fact check out her blog and send your love and hugs!! Her little guy has been in the hospital all week. That's all ......a stomach bug....no little thing in a little guy with diabetes!!!

So yeah....I guess I'm more afraid of the unknown. I've gone through illness with all of the kids and I'm used the "norm". I tend not to panic, I wait things out, wait for the body to do what it was designed to do.....but I don't believe that will be the case with J.J.

Well.....as always I calm my fears by bringing them to the foot of the Cross. I cannot worry about tomorrow for today certainly has enough trouble of it's own. When the day comes that J.J. gets sick I am assured He will be with me to carry me and strengthen me.

FAQ: The insulin Shot......

I believe the questions we receive the most have to do with the shots. When or how often do we give them? Where do we give them? What do they look like? Does it hurt him? etc, etc....So here are the answers:

J.J uses a 5/16"(8mm) 31 gauge needle....it's extremely fine.

(For some reason my browser cuts off the needle portion in this picture....if you want to see it up close click on the picture and it will take you to my Flickr page!!)

(My hubby just told me this needle looks gynormous!!! I know I should have put something in the picture as a reference...but trust me it's not that big!!!)

We go through quite a bit of syringes in a day. J.J. receives a shot after he eats anything that has carbohydrates in it.....depending on the amount of carbs. The amount of carbs determines how much we give him. Sometimes he can go without a shot after eating carbs, especially if he is extremely active, or if he's low. He may at times need what's called a "correction dose". If he is "high" and isn't eating carbs, we still need to correct for the high. He also receives a daily shot of a long acting insulin. So we are looking at 5-8 shots a day.....it all depends on the day.

All those shots need to be disposed of properly. We use a detergent bottle. When it's filled we use duct tape to seal it shut.....then throw it away!!

The shots can be given in the thigh, rear, arms, and stomach. We rotate sites to avoid fatty deposits developing in any one area. Our long acting insulin cannot go in the same site as the short acting....so we reserve the left side for long acting. J.J. absolutely hates the arms right now.....I'm not sure why. He really loves the stomach......that was the last place I thought he would like when we learned this stuff in the hospital. He tolerates the bum, but really begs us to put it in his stomach. We do sneak an arm in when he needs a shot in the night....seems like it's the most easily accessible when he's sleeping.

Here is a diagram from our Diabetes Manual

There are times when the shot we give J.J. causes a bruise. I think one of the first shots in the hospital gave him a bruise and I was really concerned about it, but our Endo says it happens sometimes. Since then we've come to just expect it at times. It doesn't happen all the time, but when it does we aren't phased by it anymore.

I think a lot of people envision the shots they get at the doc's office and cringe at the thought of getting multiple shots a day, but the needles are fine, and honestly when we tried them out on ourselves we didn't feel them at all. I'm sure that's not the case all the time, as it may depend on where it's used, how much insulin is in it, and various other factors. J.J. takes them well most of the time. There seems to be more fussing before the shot.....and especially when he is tired.

So there you have it......the insulin shot!!

Three Months.....and more researching....

It's been three months, folks. Just three months. Why does it seem like it's been so much longer? I know my body feels like it's aged at least 10 years...but three months....is that all?

I've been trying to read a bit more today. Do a little more research. I'm finding in the diabetic world that everyone has an opinion as to what is best, and there are "sides" to issues. I suppose that's nothing new.....most topics of discussion have "sides".

Take homeschooling, for example.....there are those that "school" traditionally....you know text books, tests, separate classroom in their homes, etc. Then there are those that "unschool"....they've never set eyes on a textbook, their "tests" are questions asked around the dinner table, and their classroom is the world. (This is way oversimplifying it, but you get the point.) Both "sides" are doing what is best for them, and what appears to work. And both sides tend to "snob" the other side as if they aren't both home educating their children.

I see it also in the quilting world. What? You don't hand stitch and hand quilt your quilts.....well, then by golly your not a REAL quilter!!! You shop at discount fabric stores?? That's not "REAL" fabric you know....the quality is far less superior than what you'll find at such-n-such quilt shop.

The thing is.....I'm a homeschooler and I'm a quilter...no matter what methods I use.

Now I'm a mom to a son that has diabetes. I will have to pick my "sides". I'll have to determine what "method" is best for my son. If my track record continues I'll be more eclectic in my approach. I'll use common sense where it's needed and do what is best for us, without any snobbery.....because we're all doing our best and what works best for us.

As for now.....I'm beginning to wish there wasn't so much information to weed through!!

Another Trip to St. Paul.....

Pump 101
Today we headed to our clinic for what they call "Pump 101". It was an hour long class that gave the extreme basics of pumping to a conference room full of parents. They also explained the process we must go through to obtain the pump. I'm still trying to formulate all my thoughts, but on the outset I'd say I'm a little disappointed with the class. I think the information they presented could be done in coordination with a normal endo visit and in a 1/4 of the time.

We were basically told that we have to research each of the pumps ourselves to determine which one would work best for us. The clinic itself deals extensively with Medtronic, so if we decide another pump is more compatible with J.J. then we'll have little support from the clinic. Not that we wouldn't have any....just not as much. So now the burden again is on me to research, research, research.

O.K......done with the negative!!!

The positive side of of the trip is that J.J. sat in on the meeting. He brought a backpack full of cars, and I really didn't think he was listening.....but he was!!! I had talked about the pump to him before this class and his reaction has always been that of fear, and "No way!".

After the speaker was done we had a chance to look at the various pumps. I grabbed a Medtronic pump that had a crayon skin on it, and brought it to J.J. Right away he thought it was cool, and said he would do it. He said he'd wear it on his belt and wanted to take one home with us. He didn't understand that it will take quite a while to actually get his.

One of the requirements the clinic has is the child must want the pump before they'll prescribe one. So to have him so readily accept it was a huge relief. We showed him what would attach to him and let him hold it and push the buttons. He then said... "I'll be able to do this all by myself". Ummmmm.....no!!!

Jason asked about insurances accepting the pump, and she commented that they are seeing more and more insurances denying the pump for someone that's been diagnosed less than 6 months. So we may have to wait after all. That'll be fine, I guess.....I'll need time to research!!


The Elusive 300 Test Strips
O.K......how long has it been since he was diagnosed? Three months this weekend. And.....how many times have we been able walk into the pharmacy and have them give us the prescribed 300 test strips??? ZERO!!!!!

Last month since we were given samples at our endo's office we only had to pick up 200. So we drive up today and the pharmacist says that it's been too soon since our last refill. My husband tells her that doesn't make sense, and asks how many the computer says are prescribed. She said "300", but she said that the prescription reads that we test 4-6x's a day. She then asks how many times do we test, and we say 8-12 times. She said that because the original prescription was for 4-6 she can't bill it properly, so the endo has to give them another prescription. I didn't get it at the time......to me 300 test strips is 300 test strips, and it shouldn't matter to them how many times a day we actually check.

My husband explained it this way......"The sun, the moon, and the stars all have to line up before we can get these strips." I feel that way!!! So tomorrow I'll have to call, fax, e-mail.....whatever it takes to get our N.E. to get a prescription sent to our pharmacist. Maybe, just maybe we'll get those 300 test strips!! Maybe.....

Tired From Chasing Lows....

I am extremely tired tonight....so this update will be short and to the point......if that is possible!!

After talking to the N.E. on Thursday we made a couple of adjustments in J.J.'s treatment plan. These adjustments, however, sent us chasing lows!! What that means is that I would give him an insulin dose and watch his blood glucose level plummet. When we get below a certain number we are supposed to give J.J. 15 grams of carbs and wait 15 minutes, then recheck. If still low, repeat.

Thursday night (or Friday A.M.) we "chased a low" for 2 hours!! From midnight to 2 a.m......that's checking his blood, then giving him carbs every 15 minutes for TWO HOURS in the middle of the night!!! HE IS SUCH A TROOPER.....it barely phased him!!!

Last night we chased just after dinner, then again throughout the night we watched him drop and drop and drop. We checked every 2-3 hours and finally woke him up at 5:30 to give him some milk.

Today it was a never ending chase....one minute he was fine....the next......LOW!! I was checking every hour most of this afternoon. Tonight he had birthday cake.....I decided to only give him half of what we would've given him....so far he's not spiked but is in a "safe" range for sleeping.....but we'll still get up a couple of times in the night to check him.

Needless to say.....all this chasing has me worn out!! This tired Mama is off to bed!!

Jessica's Journal......

I have asked each of my older girls to write in their journals about J.J. and his diagnosis. Jessica (15 next week) wrote quite a bit, as she is very much another “Mom” in this house. It was interesting to see what she remembered. She was our babysitter the last two evenings before J.J.’s diagnosis, when he was really sick. There were circumstances I didn’t quite remember. I’ve only included the ending of her journal entry, since it includes much of her feelings and reaction.

Excerpt of Jessica’s Journal
Her Reaction to J.J.’s diagnosis

They put him in I.C.U. and I had to leave for I wasn't his mother......
I was worried. I kept thinking, “He will never be the same again. J.J. will be insulin dependent for the rest of his life.” In church on Sunday many people came up to me and hugged me. I can’t say how encouraging that was. It made me determined to encourage other people when they are down. In 2nd hour I almost broke down, I could hardly sing.

Our pastor’s wife took us to see J.J. It was then I broke down. People said it was stressful for me, but I didn’t realize it then. I didn’t want to admit that it was stressful. Now I look back and see that it was stressful..... that I was burdened with worry for my brother and his illness. One verse that our pastor’s wife reminded me of was Romans 8: 28:

“And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.”

I shouldn’t have worried. J.J. was and is in God’s Hands. Everything that occurs is in His perfect plan and it is my job to trust and obey.

J.J. came home on Monday. It was so cool to see him playing with his sisters again. He didn’t have a care in the world (until he had to have a shot or a finger poke.)

Life became very different. We had to live from blood check to blood check. But it quickly fell into place for me at least....for my parents that is a different story. After a few weeks I began to accept J.J.’s diabetes. It became a lifestyle.

Our life is still hard and there are still more difficulties to face with my brother’s disease, but God is still sovereign and I pray that through this disease my family will learn to trust God and to give our burdens to Him. He will take care of all the details.

Psalm 62:1,2
My soul waits in silence for God only;
From Him is my salvation
He only is my rock and salvation, my stronghold;
I shall not be greatly shaken.

A first…and twice in a 24 hr period……

Diabetes is definitely becoming integrated in our lives. It's becoming "commonplace"….and how do I know that?….We forgot to give him his Lantus dose last night!! We normally give him that dose at bedtime. Well, it was 10:15 when it dawned on me…."we forgot Lantus"!!!!

Then at lunchtime today, I had given him his food, and went back to preparing our taxes. Almost 2 hours later it dawned on me. "I didn't bolus for his meal!!!"……and his mood is such lately that he's not going to remind me.

Anyway….missing those shots made me realize our lives have come back to "normal"….a new "normal", but it also makes me realize that diabetes never goes away. It's always there, it always needs attending to….

Blog worthy comments….

The past couple of days J.J. has been a little out of sorts. He's had some real mood swings. Sometimes just an angel, other times just plain scary….not sure if it's the diabetes, but he's said some things that are "blog worthy".

Last night he said just before going to bed, "Mama, I wish I didn't have diabetes". Wow….if that doesn't make a heart sick. I just said "Baby, I wish you didn't either." ….kissed him and sent him off to bed.

Today I had to call him up to get a shot (the one I forgot about)….and he wanted to fight me. He did end up sitting for me and while I was giving him the shot he said "I want to die", as he gave me this really mean looking face. Now my mind for sure knows that he's 5 years old, and he really doesn't know truly what he was saying…but I had to sit there for quite a while and ask him to never say that again. I asked him if he'd like to go back to the hospital, and he said "no"….he DOES know about that….and I told him dieing would be much worse. I had to let it go….but I do hope he never says it again. I imagine down the road we may have to battle those feelings of wanting to die rather than live with diabetes, and I can only pray God gives me the wisdom to help him with those feelings, but for now I just can't bear to hear those words come out of his mouth.

Friendly advice…

I'm not sure what to do with all the conflicting "friendly advice" we receive….sometimes from complete strangers. So much of it conflicts with what our endo is telling us. The latest we received yesterday. A friend of a friend gave us some honey that must be low carb or something (I can't read the actual label). She had a post-it note stuck on the outside that said:

"Stay Away from these(5)….Potatoes, Rice, Corn, Hi-Carb Breads, and Pasta. All turn to sugar in the body. Cause hi-glucose levels."

At first I was in shock as I thought of the last 4 dinners my son ate…..

Monday: hamburgers with tator tots(POTATOES)

Tuesday: Grilled Cheese(not sure if our bread is "hi-carb" or not….it's wheat?)

Wednesday: Vegetable stew(had CORN in it) with Rice (RICE)

Thursday: Fettuccini(PASTA)

hmmm…..our endo says he can have anything….ANYTHING….as long as we bolus for it. So what do I do with so much "friendly advice"? And so much conflicting advice??? I wonder if it's the whole Type 1 vs. Type 2 thing or ???? . I know their hearts are really just wanting to help us, but I still just don't know how to respond yet. I guess for now I'll keep listening to our endo, and observing J.J. and what works best for him.....but still....it just makes me say "hmmmm??"

Anxiety Revisited....

I had to chuckle this morning.  We've been watching J.J.'s numbers steadily rise over the past week or so.  Last night we decided to up our Lantus dose and then proceed from there.  Whenever we make a Lantus change we're supposed to get up in the middle of the night to check readings.  The past couple of months J.J. has been dropping 200 plus from the time we put him to bed, until the time he gets up.  Last night, he didn't drop....he went up....and up.....then came down a little.  Hmmm.....and we even upped the Lantus.

 

So why am I chuckling?  Because a couple of days ago I wrote a little about anxiety....how I shouldn't fret about this disease because God knows....He knows all the hairs on J.J.'s head....I don't even know that!!  The funny thing is....as much as I believe that to the core....I get anxious!!!  This morning after I checked his blood glucose level my heart had that little squeeze it gets when, well, I'm anxious!!!  My mind was reeling...."O.K....what's happening now?  What should we do?  How should I dose this morning?  Is he sick?  Is his pancreas done, caput, no more? Do I have to wait three days to figure out if it's a pattern or should I up Lantus again tonight?"   And the questions continued....until I chuckled.....this is an anxiety producing disease for sure!!!

 

So with each new anxiety producing circumstance diabetes brings into our lives....READ:  ALL THE TIME!!!......I'll just have to continue to give it to God, pray, entrust J.J. to Him, then proceed with the best course of action at the moment.....otherwise I'll have a heart-attack in the next year.....or be put in the loony bin!!! (Do they even have loony bins anymore?!!)

 

 

 

Rejoicing......

Although our internet is still being halted by our internet company I can rejoice that there is a library close enough where I can access the internet if I need to!! WOW!! What speed!!!...now I know what I'm missing....I thought it was Blogger that was slow....!!

Anyway.....what we are truly rejoicing in today is that the insurance company approved all 300 test strips!! YAY!!! Thanks to everyone that prayed!! God is good!! We are just so thankful it was a "communication error". I've been afraid to call, but we needed more strips so my husband called today. The first lady he spoke to didn't know anything, but grabbed the guy I talked to the other day, and they both walked down to the prescriptions department to see what was going on. They came back saying the prescriptions department just approved it, and to give them 15 minutes to get it in the system!!! YIPPEE!!! And here I was thinking such bad thoughts about that company, now I could kiss them!!

Another praise is from yesterday....I wrote it last night but couldn't post....so here it is:

February 14, 2008
Yesterday J.J. decided to do his own finger poke. I got there just in time to see him getting the blood…he forgot to get the monitor ready so I had to help with that….but it surprised me that he did what he did. Today he did it all himself…(and I remembered to get pictures this time!!)…he really goes all out…milks his arm and says “I’m getting it Mama, I’m milkin’ it!!” I thought I’d just share some pictures of this monumental day!!

Hannah has now checked his blood for us as well. Sarah has done it a few more times. Allison was about to check today, but I put the breaks on …she’s a little rambunctious and not as responsible….J.J. and Allison’s proximity in age makes it difficult for them to accomplish things without some sort of “Uh-huh…..Mom said….I told you so…stop that….MOMMMMMM!!” scenario….so for now Allison will not be checking J.J’s blood for us….but thanks hon, for your willingness!!

All Went Well...

Last night we made it to the Steve Curtis Chapman concert. When we were getting ready J.J. came into the bathroom and told me he really didn't want to go to the babysitters house. I reminded him that they had a little girl his age. His response to that was..."They won't have any boy toys." I suggested he load up his Jay Jay the Jet Plane suitcase with the boy toys he thought he could share. That got his mind off of where he was going...he had a mission to complete!!

The family that watched J.J. have a 16 yr. old daughter that's had diabetes since she was three. It didn't take us long to show them our log, and our "routine". They were a little rusty on our treatment plan since their daughter has been on the pump for 9 years, but they grasped it pretty quick. I felt comfortable they would know how to handle anything that came up. When we picked him up after the concert he said the dad was "fast at shots"...which means he did really good!! He had a fun time and says he won't mind going back.

The concert itself was bittersweet. I was happy to be there, but hard to release the tension. I cried a lot. Remembering the past, and wondering what the future will hold. The theme of the concert is "LIVE IN THIS MOMENT"....just what it says....so it was a reminder for me to live in the here and now..."forgetting what is behind and pressing forward"....a reminder to actually LIVE.....and a reminder to be sold out for Christ.

One of his songs is a tear jerker....it's called "Cinderella".... it's basically about how fast our kids grow up and to buy up the time, not miss any opportunities with them. Before he performed the song he explained what led him to write the song....he was busy writing songs, trying to meet deadlines, etc....and was trying to get his daughters ready for bed.....baths, bedtimes stories, prayers etc.....and how frustrated and impatient he was with them....he finally gets them in bed and sits down to write and realized how fast time flies....his oldest daughter is already off to college and out of the home. The very beginning of the song just got to me....about how his daughter doesn't have a care in the world while he wears the weight of the world on his shoulders....that's how I feel sometimes. J.J. just goes on being a kid while I bear the weight of this disease.

Health Insruance STINKS....A little venting...

Warning:  This post is a venting post....I'm sad, angry, and frustrated right now....I'll post it for now, but may delete it when I gain my composure!!

 

We just received a notice in the mail telling us the insurance is now approving 200 test strips and 200 syringes.  This is still 100 less than my doctor is prescribing……and at least 50 less than what we actually use in a month.  I am frustrated with our insurance.  How do they decide what is "medically necessary" for my son?  Are they just sitting in some office thinking  "Well, they're asking for 300, we only want to pay for 100, how about we offer them 200…sounds like a good number."  How can they say only 200 is what is "medically necessary"?  LIVE WITH ME FOR A MONTH!!!  How am I supposed to determine how much of the "medically necessary" insulin I'm to administer to my son without testing his blood?  I just looked back at our log for the past 15 days…128 tests!!  ALL MEDICALLY NECESSARY!!!  Double that number we are looking at around 250-260 a month.  I am just trying to understand….we've paid our premium for how many years?  Being self-employed is tough enough, and we even contemplated not having health insurance at times to make ends meet, but always thought…."NO, we just don't know what could happen…it's good to have."  But what good is health insurance if it doesn't pay for what is needed to keep you or your family healthy?  TO KEEP THEM ALIVE!???

 

Well this may seem like a little thing…so what?  "At least they'll pay for 200"…and yes, at least they upped it a little.  But what about the insulin pump….we have to go through the same process.  It has to be deemed MEDICALLY NECESSARY!!!  I just can't see them approving the pump at this point if they aren't willing to see the need to check blood more often in a small child!!!  How do I scream on paper?

 

Wow!!!  After crying my eyes out for a bit, and typing this post….I feel some better.  I am assured through scripture that "My God will supply all [my] needs according to His riches in glory in Christ Jesus"..(Phil 4:19)  I'm may not see HOW He'll supply, but I'm assured that we will be supplied with exactly what we need.  As a side praise….yesterday we received a card in the mail with $50 cash in it.  No name, no return address, just a note card with the money inserted in it.  We put it directly into J.J.'s savings account we set up for his medical needs.  That will cover the extra 50 tests we'll need for this month!!  Thank-you God…and bless the tender heart that sent it!!

 

Now….I have to compose myself, try my best to put this all aside and get ready for a night out with my husband….our first "date" since the big D-day!!  Any advice on covering up puffy, swollen, red eyes??     

Sarah.... steps up to the plate....

Diabetes affects everyone in the family....not just the child and parents, but the siblings as well. It will be interesting to see how this ultimately impacts each one our children.

So far we have not asked the girls to help with J.J.'s diabetes. This is our responsibility and we know that. Jess(14 y.o) took one of the classes with us in the hospital, but is somewhat apprehensive. Hannah(12 y.o.) is just too scared she will mess up somehow. If they were to show interest we would definitely teach them at least how to check blood. It would be nice to know there is someone else in the house that could take over in the event something happened to me or Jason.

Well....yesterday Sarah(10 y.o) stepped up to the plate. She asked at dinner if she could check J.J.'s blood for us....meal times are always rushed now with measuring food, checking blood sugars, recording carbs, etc. The first finger poke she completely missed the skin....J.J. said "You didn't do anything, Sarah." The second time she did it and got enough blood. This morning I let her do the entire check herself. J.J. was tired and didn't want her to do it, but she did great. Much better than my first few tries.

I'm not sure if she gained confidence after we watched a video together we received from the American Diabetes Association. It was an introductory video explaining diabetes to newly diagnosed patients. The "actors" were just normal kids with diabetes. I think the kids gained a lot of great information and it was good for them to hear from other kids what it's like to live with diabetes, and how they manage it. All the kids in the video were of course healthy active kids. I think the video helped ease the girls' fears after seeing J.J. so sick in the hospital.

Sarah also caused our hearts to melt yesterday when she offered her $500 savings to go towards helping J.J. get the pump. We've already adjusted their lifestyle some....as a family we decided to forgo 4-H horse activities this year as that is one of our biggest "not so necessary" extracurricular activities.....besides Jason sold the vehicle that would transport the horses to the practices etc.....anyway......I explained a little more in detail yesterday why we've adjusted our lifestyle a bit, and a little into the decision making process. That's when she said "J.J. can have my $500 savings. I don't know what I'm gonna do with it." She has a sweet tender heart!!

Just added frustrations.....

I've spent the past couple of days dealing with our insurance company, the hospital, and bank!! UGH!!! It doesn't make my mood cheery that's for sure!! We've never had anything major happen medically in our family...besides babies, miscarriages, broken toes, ear infections, etc. So to have to deal with not only diabetes, but the insurance and the medical entities wanting their money is very draining.

We are still fighting to have the insurance pay for the test strips. Our Endo prescribed 300/mo. but the insurance only wants to pay for 100. They cost us $1/strip. And we are finding that we do go through close to the prescribed amount each month. We've had to contact both our insurance and our clinic to follow up. Just amounts to a lot of time on the phone. I found out yesterday that the insurance does have the information they need now, but it's in review!! We are so praying that they approve the test strips.

We finally got the hospital bill yesterday as well. I called this morning to set up payments, and was given a ridiculously high amount.....for us right now, anyway....the lady was snippy....not a great way to begin my Saturday!!

Ramblings....updates...news.....

My mind has been going non-stop this week. I've thought about so much but haven't had time to write it down into coherent sentences. I'll just try to not confuse anyone with my ramblings and thoughts that shoot in all different directions!! As a side note....right now I'm NOT writing about the spiritual side to all of this....all of the many lessons and truths our good and gracious Lord & Savior has shown us through diabetes.........I know I will....I've written plenty, but I end up in tears(relief tears, thankful tears, blessing tears)....and my sinuses are totally rebelling right now!! So for now you get "surfacey"....oh. I hate surfacey....but here it is......

Pump News

I talked to our nurse educator this week. She says we are doing great with record keeping and learning how to adjust insulin doses on our own. We are now scheduled for the Pump 101 class offered in early March. We can't move forward with the pump until our next Endo visit. We see her at the end of March, so we will be set to request a pump and have an educated discussion with her.

Jason didn't have time to call our insurance about approving the pump. (You ask why I didn't do it?....Jason and the children are on one insurance....I am on another....so he generally needs to call.) I did ask our nurse whether they are typically approved. She said "yes", at first, but then seeing what difficulties we've had with just test strips, she cautioned her response and said it may be a battle. I'll update that as I hear news.

OVERWHELMED.....

.....that seems to be the buzz word I hear from parents with diabetic children. They WERE overwhelmed. Some have even gotten teary eyed as they recount "the beginning". As I listen to them I think 'You KNOW!!!.......you know." I agree with their assessments. Overwhelmed now---but for me the encouragement lies in the fact that they all say----"it gets easier!!!"

Lofty Ideas

For some reason in the morning before I get out of bed I think of some pretty far reaching stuff. First let me say I am just so thankful we live in a country that even has enough insulin to supply my son, and that he is taking it right now!! He is alive because we can get insulin.....BUT.... Just a few weeks ago.....Jason and I laid in bed and talked about being in the "middle class crunch"----not poor enough(or from another country) to receive govt aide and yet not wealthy enough to not have this affect our entire lives. We wondered how we could start something that would help not only us but other people in our position. People and corporations are always looking for organizations to support so they can get tax deductions. Why not set up a Pump Foundation? Yes, diabetes research organizations are important, but sometimes just helping to support what we know works is just as important. Having our lives being hit with the diabetes Mack truck is hard, but to add 'insult to injury" is the financial hit and because of that financial hit, the toll it takes on the family. If there was a privately sponsored organization.....not government sponsored.....where people can see the direct results of their donation money. Donors and kids interacting!! Anyway....I'm sure something like that is already established somewhere...but that's what we talked about.....it was around the end of the year and a few of our friends were talking about their last minute tax-deductible contributions which made us think of it!!

This morning I woke up thinking about getting a lake house....what does that have to do with lofty ideas you ask?.....well I thought....wouldn't it be nice to have a lake house or here in MN we call it "going up north" or "going to the cabin"........a home on a lake where families affected with diabetes could retreat to. Whether it be the whole family, or just the parents or just one parent to get away for a bit. It would be decked out with everything a person here in MN dreams of having......Cabin, secluded woods, yet right on the lake with the ability to fish, water-ski, jet-ski, tube, or canoe......a complete retreat house!! Wouldn't that be cool? Give a family a break, a fun distraction, a time for reflection....whatever they needed it for.(I'd like to focus on diabetes families, but I also think of the families dealing with childhood cancer, or other "biggies" would benefit as well!!) I'm sure something like this is out there.....right?.....there's nothing new under the sun!!!

It's All Worth It

I was up late last night, and ended up waking at the 3 am check because J.J. was "low" and needed juice. The extra moving around, lights being turned on, etc made it hard to sleep. My normal 6 am wake time flew past, and before I knew it....8 am was here. I was awakened by a slight movement in the bed. I sat up a little to see if anyone was in the room, but no one was.....so I thought. I laid in bed trying to wake up, but something seemed strange. I took out my earplugs, and then I heard it. Something or someone was in my room!! The slithering sound was getting closer to my side of the bed. I didn't move, I didn't make a sound....until.....a blond little head could be seen just beyond the covers. I sat up quickly and said "BOO!!".....which made the slinky, slitherer startle, jump and scream!!:-) We both laughed!!! J.J. says "I was trying to trick you Mama!". Which was quickly followed by "O.K.....it's time to get up, I need to eat."

This set the tone for the whole day!! How much fun it is to have him make me laugh so easily. I eat up those times now. It's these moments that make me say "It's All Worth It!!!" All the finger pokes, all the shots, all the calculations, all the decisions about treatment, dosages,etc....all the care, all the worry, all the _______!!!.......IT'S ALL WORTH IT!!!

Another Late Night....

I'm up late again..very tired, fatigued, and have a "hud-ache"(as J.J. would say it)..J.J.'s been running high, then low, then high today.  Very strange patterns lately.  So here we are checking him 2-3 times a night.  This seems to be our pattern right now.  He's o.k. for a few days, then not o.k.,.....o.k.....then not o.k.  Last night at midnight I should have checked him, but I didn't. My Mama heart is so sad to have to poke him so much.  I thought he had been doing fine at night, so I decided to leave him alone and try to sleep.  Unfortunately his waking number was the highest he's been since out of the hospital. 

 

With the odd numbers today we decided another round of night checks are in order.  We are having to do this at least 3-4 nights a week.  Jason says he'll take all the night checks for me since I take on most of the care, but it's still hard.  If I go to bed, I end up waking up for all of the checks and not being able to sleep very good at all.  If I can stay up for the midnight check, then my body is wasted and I can sleep through the 3 am check.....but I still wake at 5 or so and am anxious to know the number.  That's what our life revolves around....numbers.....even the kids ask ...."Where is he at?"...."Is he high or low?".

 

I've been sad lately....and it's been hard to justify at times.  I get frustrated at myself for being sad, but that's what I am.....just sad.  To help keep me from sinking too low I try to fill my mind with what I am thankful for.  Even little dumb things.....like in the hospital I was thankful for extended-wear contacts.  Since we didn't know we were going straight to the hospital I didn't have an overnight bag or anything.....and being a good 1 1/2 hours away, having contacts I could leave in and not be in pain was truly a blessing.  I guess being thankful reminds me of Phil 4:6-7....

 

Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.

And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

The beginning of verse 6 is sooooo hard to carry out right now.....but the answer is in the second half.....Pray:  making requests while being thankful.....I know if I just pray the peace will come!!  And it does....but then my mind starts up again, or the tears start to flow.  The harder question for me is....Can I be at peace, yet still be sad?  Be content with this trial, this suffering..... yet still feel a heavy burden? Hmm.....

20 minutes to go....can I stay awake?  I had trained myself to be a morning person to match my husbands personality...so this late night stuff is hard for me right now.  I know I'll probably start getting used to being up late again.  I don't know why but the end of Robert Frosts poem "Stopping by Woods on a Snowy Evening" came to mind.....

The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep. 

........and miles to go before I sleep.....well, actually about 15 minutes now!!:) 

 

December 8, 2007

A day forever etched in my memory!!

J.J.'s condition had deteriorated the week prior to us going to the doctor, but this day it plummeted. When we arrived in the ER after going to the doc, J.J. was so weak he couldn't walk. The ER staff started him on an IV to help him get hydrated. He then started complaining of a headache, and writhed in pain. They ordered an immediate CT scan to determine if there was swelling on the brain. My heart almost stopped.....my breathing was slow. The week prior I had prepared myself for the diagnosis...diabetes, o.k. we can handle that....but thoughts crossed my mind now of death. "Lord, is this the day You've ordained for him?" "Oh please, Lord, I'll accept Your will, but I do want him, please allow him to stay with us." "He's my only son, Lord. You have an only Son....You know what it's like Lord....please sustain me if it's time for my only son to die.". I know it was a matter of minutes before they came back with the results...but it seemed like an eternity. Thankfully the tests came back negative. Now it was time to wait it out and watch his reaction to the treatment.

J.J. in the ER!!

J.J. was moved to the I.C.U. where he was started on an insulin drip and monitored. About 45 minutes later he again complained of a headache. This time it was much worse and for a longer period of time. We had the doctors and nurses trying to figure out how to help him. He finally did calm down, and it was later revealed to us by the doctor that they had prescribed the wrong dosage of insulin, so they were bringing his blood glucose down way too fast. He could not eat or drink for fear of him going into a coma and possibly needing to put a tube down his throat. We fed him ice chips the rest of the day. He was still so tired and lethargic.

The nurses had troubles with the IV's because of his size and condition. In the middle of the night one of his IV's came out and it took 45 minutes to reinsert. The trauma from that left him exhausted and delirious. He was so fearful that nurses were going to hurt him so he continued to cry out "in pain" for some time. It took me a bit to realize he wasn't in pain, but feared the pain. I promised him I would shut the door so the nurses would stay out. With that he calmed down and finally fell asleep. I then begged the nurse to postpone her hourly check long enough to get him into a deep sleep. The next two blood draws he slept through!!

J.J. in I.C.U!!! He still doesn't like people in blue outfits...I wonder why?!!!:)

Jason's brothers, Andy and Ben, drove up from NE!!
Jason was surprised to hear laughing in the waiting room at 3:30 AM. Comes to find out it's his brothers!! They were a nice diversion for Jason.

J.J. made it through the first 18 hours without major complications, so he was transported to a normal room where we started our diabetic training. We spent the next afternoon in class learning the basics. As our educator said, "A first grade education in diabetes." Boy was she right. We tried to learn what we could but being tired, stressed, fatigued. WOW!! That afternoon the rest of the children were brought to us, plus we had other visitors to keep J.J. company. He was still very tired and weak, but able to walk. The following day (December 10th), we had another class in the morning and J.J. was released right after lunch.

J.J. --About 30 hours after being admitted to the hospital. His smile has returned!!