God knows what He's doing...

I find that an interesting comment. While at the end of the day, I will always say I agree with it, I'm not sure you should say that to me in regards to this latest trial. I don't know why. I somehow find it annoying and unsettling.

People also say it in regards to the "why" of my kids going to school this year. They're probably right. But, for now, (probably because of lack of sleep) all I can think of are the negatives. They are so cranky and tired and DO not get along. They also seem to think they deserve extra privileges on the weekend. Also, any contact I used to have with adults is pretty much gone. I find myself trying to go up to the school just so I can talk to an adult. But then, I do... and realize that none of them know me. So, they just stare at me and maybe try to make small talk.

Then, I try to somehow help my little girl who is trying her best to survive the academic onslaught. But who also wants to keep up the social pace that all of the other kids are seeming to keep. I have no idea how. There must be a secret that we do not know. I have had to say no to so many things and now I am officially the bad guy. Perfect. It fits. Nothing is seeming to go well right now. But...


God knows what He's doing...

Carbs

My dear friend Rachel gave me a good conversation starter. I have not had a lot of time lately (believe it or not) and I really haven't wanted to rant all day long about Diabetes details. I'm sure you're tired of hearing about it. But, the nursing thing while treating diabetes is an interesting topic. Most people are intrigued and wonder how it can be done.  Here's the scoop. They count carbs of breast milk just the same as they count carbs of formula. (It is very imprecise but... it sorta works.) So, it is 2 carbs for every ounce of breast milk. The trouble is, how many ounces is he drinking each time??? It has been said that you can weigh them to find out how much they took in. Unfortunately, I don't have an infant scale. My own scale would be too difficult. So... I guess. ( : I know that in the morning it appears he drinks like 10 oz. (fir reeeal!)  ( :

And, in the afternoon, it appears he drinks like 2 oz. So, obviously the insulin would be quite different at these 2 times. Fortunately, I'm figuring it out.  The good news is... my diet doesn't have to change at all. Yippeee!!!

That is only one of the math problems I tackle during the day. Waaa. I know. 

Anyway, we are headed to soccer practice. Love to you all!!!!

A Post for Me

I just need to be reminded of this. 

"So be truly glad! There is wonderful joy ahead, even though it is necessary for you to endure many trials for a while.  These trials are only to test your faith, to show that it is strong and pure. It is being tested as fire tests and purifies gold- and your faith is far more precious to God than mere gold. So if your faith remains strong after being tried by fiery trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world."  1 Peter 1:6-7

No, I don't really want praise or glory or honor. I'd trade all of that away to relieve Forest of this trial. But, I am truly glad that there is wonderful joy ahead. I am truly glad that there is a heaven. Where there is no sickness, no death, no crying...

I long for heaven.

Things I would have blogged about

Well, believe it or not, other things have been going on in our house besides Blood sugar checks, insulin shots, pump management, doctors calls and ER visits. ( : There are many things that I would have been blogging about, but, they were put aside for a little while. For instance...

Rachel learned to Water Ski this summer! Just a couple of weeks ago as a matter of fact! She took a few tries getting up but when she made it she was thrilled! Unfortunately, the next day it rained so she didn't get to go again. There is always next year. Parker really wanted to try. I told him he had to be at least 10 (maybe 11). That is how old Rachel is after all. I think I was 12 when I learned.

The first week of school for Rachel and Parker went really well. They are very tired and starving at the end of each day. So far though, I think they will do just fine. So... A great big relief to this home school mommy. I guess we haven't been too shabby in our learning after all. I miss the terribly though. I try not to think about it too much.

Also, today, I was playing on the floor with Forest and over the speakers we had the music playing that Tim had put together to take to the hospital when he was born. There are so many great meaningful songs on that mix. Tim happened to notice that Forest was ACTUALLY born to the song "There's a difference 'tween Livin' and Livin' Well" by George Strait. We love that song. If you ever get the chance... you should listen to it. My eyes were filling with tears just thinking about the moment when he was born. I wouldn't trade this little man for anything. He has helped our family in our pursuit of "living well". This road we are on is windy and full of ups and downs but I am OH SO GLAD we are on it. He is a blessing to our hearts in every way. Then, the next song that plays in the mix is called "Beautiful Scandalous Night" by Deri Daugherty (from The Choir) It says ...

"Go on up to the fountain of mercy, to the crimson perpetual tide, kneel down on the shore, be thirsty no more, go under and be purified. At the wonderful, tragic, mysterious tree, On that beautiful, scandalous night, you and me, were atoned by His blood and forever washed white on that Beautiful, Scandalous Night." So, I did. Right then, in that moment, I met with my heavenly Father and knelt and let His mercy and grace cover me. It just has to. I can't go on without it. Nothing has stripped me so completely of my ability to "self sustain". I need Him. Desperately. Forest has brought that blessing to my life. He has brought me to the foot of the cross. Right where I need to be...

Whew...

OK, well, after last night's post... here is the latest. I checked his BG level at 10 p.m. and it was still "HI" so the doctor had me check his ketones. Those are the nasty little things that get released when he doesn't have any insulin working in his body AND that sent us to Pediatric ICU for 4 days. Guess what? He registered a 5.4. Just to put that in perspective... they get concerned when it hits "1". So, after almost passing out at the sight of that number, I call the doctor back. Of course, I think they FINALLY believe me now that this pump is NOT WORKING. I repeat, NOT WORKING. So, they have me give him a Lantus injection and a Novolog injection but in the mean time he gets so lethargic and limp that the doctor thought it would be prudent to go ahead and head back in to the ER. So, off we went. They hydrated him and checked all of his labs again. We finally got home at 1:30 a.m. Tim stayed home with Rachel since she was already asleep (at my suggestion) and my parents and sweet friend Laura ran up to be with me. At one point I actually fell asleep with my head hanging back and mouth wide open in a very uncomfortable hospital chair. Yep, I need some rest.

Oh and by the way, I didn't forget about my son Parker. (: He was staying the night at a friend's house....

Please pray

Today we went to the Clinic in Tulsa due to 3 site changes not working. They proceeded to tell me that we just needed to give Forest MORE insulin through his pump. Fine... if it works. So far, it isn't. Last check he read "HI". They want me to keep waiting. I am dying here...

Nope

Nope. The site is still not working. Nope. I didn't sleep. Nope. I don't want to do another site change. But... Nope. There is no other option. and Nope. I don't like this at all...

Dread

Site change day is definitely a dreaded day. I was glad though to have made it for 3 full days and not have to do an "emergency" site change. That was definitely nice. So, I decided I would try to have a good attitude about the task today. I even made the opportunity for a nice warm bath for the little guy without any needles in his bum. It was very sweet. Lots of splashing and laughing. Not for too long though...

I got everything ready and did the site change and all was well. I set his "basal rate" (don't worry, you don't want to know) pretty low since he has crashed after every other site change. So, I wasn't too shocked when his numbers started to climb after each subsequent glucose check. I increased things and then finally even gave a correction. So, by 8:20 I expected we would see some better numbers. Not so. The meter just said "HI".

Crap. Another site not working. Sorry... my holy side isn't working at a moment like that. ) :
So, I got to do a site change again at 8:30 at night. That is definitely going to mean a long night. Let's hope that it's working... and if it is, that it doesn't make him go TOO low. Man, just, man, I don't know what I want to say besides just...

This sucks.

First day of ACS...

Notice Parker just looks delighted. (:
Actually he has been quite a trooper. When that alarm goes off at 6:30 a.m. it is not pretty. Not even for mom. Who of course is up all hours of the night right now anyway. But we're making it. Rachel had homework the first day but luckily Mrs. Fisher had already prepared her for that. She finished with time to spare for the evening. If we can keep our time management in check we should be good. So far we have had 2 good uneventful diabetic days. But today is site change day so we shall see if it continues. (: Much love from the Cook house...

Life goes on...

You know, after a day like yesterday, one really needs to rest and reflect. As you might have guessed, that just can't happen. Not in mommy world. (: As you all know. So, today, we're back in full swing. This hermit mommy that wants to never leave the house HAD to go to the store and get some things for the pending "first day of school". Rachel and Forest and I went and we made it back with no crisis happenings. I was holding my breath the whole time trust me. Laundry has got to get done (and even some ironing). So I am working on those things. I guess that is good. If I had too much time to pause, fear might just eat me alive. As it is, I am praying through each 3 hour interval before I check blood sugars again and trusting him into God's care. There is no better place.

Thank all of you for lifting us up in prayer. You are amazing friends. Thank you for your encouraging words and even some scripture. (That was a perfect one Courtney) I haven't had a lot of time in the word lately. As you can imagine. It was so good to read that and be reminded of God's unwavering love and care for us. Even when it seems like He has taken off on me. He IS there. Thanks again for the meals. It's so good right now. If I had to make a meal I would probably just cry. Well... what would really happen is my sweet husband would do it. (:
Lots of love.....

OK... I spoke too soon... after I posted this calm peaceful post... life went crazy. Of course. (:
I was cutting Parker's hair in the bathroom (can't touch ears or collar.)...and Rachel comes in and says, "Mom, Forest is real stinky." OK no big deal, I'll change him and continue on. Right? Wrong. This was the messiest diaper ever known to man. Or at least this little man. It was ALL OVER his infusion site for the pump. Not good. So, I had to wrestle him onto his tummy, clean all of it off and remove the site and somehow keep it sterile. Then... yes, once again, I had to put in a whole new infusion site. They said I would only have to do that once every 72 hours. They lied. Babies in diapers and diabetic pump infusion sites do not go well together.

Not so good day

Today is August 9th , 2008. Today, Phoenix is 3 yrs. old. and in heaven. I was prepared to have somewhat of a sad day and make some cupcakes. I also thought we might go visit his little burial site. Never "fun" but always good. However, none of that has happened.

I had to run back out to Skiatook lake to pick up Rachel who had stayed the night in the motor home with my parents.So, we packed up our "diabetes stuff" and off we went. Earlier today, I had noticed that after breakfast, Forest's blood sugar went up. Not incredibly strange... but sorta strange. Since I had given him enough insulin to cover what he ate. Also, since he had gone up... I gave him a correction of insulin at the next meal along with his normal insulin. As we were driving to Skiatook, I noticed that he wasn't perking up like he should. He was just sort of limp. So... I pulled over in the Wal-Mart parking lot to check his blood sugar. Also, I checked the pump for a malfunction and I checked the tubing... no bubbles. So, his blood sugar was 480. Just slightly under what it was when he went to the ER. What????? His pump site must not be absorbing!! Guess what? We are 40 minutes from home and I don't have a syringe. Never thought of having a syringe with me. So... I jump in the van and start driving as fast as legally possible. We made it home and after talking with the Dr. on my way, she said to give him a shot of insulin, then replace the site. So... that is what I did. Then, I needed to check his blood sugar again. To make sure the new site was working and also because, every time I have changed his site before it absorbs a little too well and he crashes! Guess what? I couldn't find the glucometer. I looked all over the van.. all over the house. No where! So, I call the pharmacy and they say I can come get one. So, with Forest in tow... I run to the pharmacy. It takes forever of course because the pharmacist, with the best of intentions is trying to make sure he gets one that our insurance will cover. We finally get it and run home and find out that the lancets they gave me won't work with the new meter. So... I run back to the pharmacy and call them and say, can I please just check his blood sugar when I get there??? Yes, they said that would be OK. So, we get the lancets... and the meter won't start. UGHH!!! No battery... so the nice lady runs to get me a battery. In the mean time... Forest is fading. Fast! She returns, we get the battery in, the meter won't work... you have to have a code key! What??? Apparently the code key is in the box at home. Nice. Now, Forest has officially passed out, with eyes rolling in the back of his head. No drama, I'm not kidding. Finally, she remembers an old glucometer they have in the back of the pharmacy with strips that were expired. I said... I don't care can we please use them??? I didn't know if he was HIGH or LOW! She got it and we finally got a reading. He was incredibly low! So, she let me come behind the door and unplug his pump and nurse him. He finally came around and was feeling a little better. Then, we came home and I fed him some oatmeal and hooked him back up. Now he is sleeping and his blood sugar (for the moment) is good. But, I on the other hand, am not so good. I need to cry and sleep for 5 days straight to even have a shot at being good.

Good day

Well, although I don't like to be a downer, in this instance, I hesitate to say we are doing "good".

I don't want any of you to stop praying for us for one second. Please.

But, I do have to admit, today was a pretty good day. So far of course, it's only 7. (: Forest started the day with blood sugars a little high. We have been able to bring them slowly down and I feel pretty good about where he is now. I feel like I am walking on a tight rope. One wrong move and down we go. (or up) It has been really fun to watch his little personality return. He is all boy for sure!! He really has extreme curiosity and when he plays with a toy he prefers to bang it or throw it on the floor as to playing calmly with it. Sounds normal so far right?

He is so close to crawling. Oh my, that could be crazy. I will have to watch him and adjust his insulin as he gets more active. Not that he will be running a marathon or anything but exercise will definitely effect his levels. Pardon me... just thinking out loud. (or not really I guess)

Well, off to do some laundry. I pray tonight goes well. Love to you all...

I'm going to be sick

Today, for the first time, I did a site change all by myself. I can tell you, I was visibly shaking. Getting all of the details right with no bubbles in the line, all the programming correct, and putting a needle in a squirmy little 8 month old bottom are just too much to bear. Then, to top it off, I made a couple of mistakes. I think I managed to correct them but in the mean time, I think I bruised his little bottom. Honestly, I feel sick. It has to get better. Please let it get better...

Successful site change

Every third day, the needle for the pump must be removed and a new one put in a new location. This is a multi-step process that we were shown in a 10 minute demonstration. So... I was just slightly apprehensive. My sweet friend Laura (who is now unfortunately a professional site changer) walked me through it. It went well. Forest was fussy (I think due to a gassy tummy because mommy ate something wrong.) but he didn't cry at all when I put the needle in. Thank God for Lidocaine!!! However, the rest of the day went dramatically down hill very fast. This was by far the worst day of blood sugar management we have had. He crashed and I wasn't able to get him back up for 4 hours. Honestly, that was the worst 4 hours EVER. I fed him, gave him extra food... then, when he would eat no more, I had to squirt cake decorating gel into his little cheeks. Yuck. He managed to get it everywhere. So, he had a blue face, blue hands, blue everything. That got him up just a little. Then, I checked him again and he had gone back down! I nursed him one more time. In the middle of all of this, I had to detach him from the pump. Finally, at 5, I got him high enough that I was able to reattach his pump. Then... he went to 421!!! What on earth????? I could not feel more helpless! Please pray. I don't have a feeling this will be an easy night.

I could be sleeping

But, I can't. My sleep life is so messed up. The good news however, is I think we have found the right dose of insulin for night time. He has been in the 100's so far since about 5:30 this evening! That is huge. He is slowly climbing but that is much better than crashing. I will be able to correct in the morning. Now, if I could actually go to sleep that would just be life changing.

I have been reading other blog posts and realizing once again that as my life has been standing still in this trial, others lives have been going right along. Weird. I know that all of you have been praying for Forest and oh how I need you to be doing that. Thank you so much. He is such a precious little guy. He is doing much better, laughing and playing. Rolling around and grabbing every toy in sight and also starting to scooch a little on his belly. YIKES! This is such a crazy time to be adding this to his life. He is getting slowly more mobile, and just beginning to add little foods to his diet. Such a fun and exciting time and now...such a complicated time. I know that God will give us the strength as we need it. I have allowed myself to worry about the future and how I will handle all of this when I should just be thanking God that my little boy is alive and well. I know what it means to take one day at a time and I still have trouble doing it.

Big hugs from my house to all of my amazing friends. Thank you so much for the meals. I'm eating well again and my milk seems to still be there! Yeah! I appear to have lost about 10 pounds but I'm sure I can fix that pretty quickly. (: Thank you especially to the Robertson's for the "diabetic donations" and for Jim delivering little things to help us. Also thanks especially to Mr. Steve Fisher who was mowing our lawn when we woke up this morning! (Tim's tractor broke last week while we were at the hospital... of course.) Steve is one brave soul. It was only like 107 degrees today. He came back to finish late this evening and mowed in the dark!! I didn't know you could do that. I looked out the back window and said... "It's like he's mowing in the great abyss." Tim was so humbled. He really wanted to hop on his tractor and go out and help. BUT... it's in the shop so he just had to sit and receive help. NOT EASY for him. (:

OK, I will shut the computer now and hopefully close my eyes. Good night!

Continued

When we first arrived at St. Francis, they had to detach his IV because it was not compatible with their IV machines. So, for an hour, I held him and waited while they ordered another IV drip. They did not start the insulin at first. He was still in a very delirious and agitated state. Hard to console. It was emotionally draining and physically exhausting. They finally got the IV in, and some more oxygen on him. Then, eventually, an insulin drip. He fell off to sleep. I stood there, over his crib and didn't take an eye off of him. The doctor came in and gave me a summary of what they would be doing to correct his little body and told me not to worry... "by the time he is a teenager, we'll have a cure." Boy, do I hope so. I will choose to believe that. I relaxed a bit, for the first time feeling hopeful that I knew what the problem was and they were fixing it. At least it wasn't the great unknown thing that was making him sick. 100 years ago, diabetes was a death sentence. Even though this will take all of my time and energy for a long time to come, at least he can live. And even live a normal life. As I sat there staring at him, Tim and the kids finally arrived. We were all so concerned. We were beginning what turned out to be 48 hours of not feeding him and just trying to make him better. He slept alot. When he did wake up, he was hungry so he wasn't very happy. We learned a few tricks at calming him down. He really like to have his little hands held tightly and I held him of course as much as possible. His little mouth was so dry. We were allowed to dip his pacifier in water and give it to him. But only every 30 minutes. Anything he took in by mouth would affect his lab work. Our goal was to get those numbers normal so that he could start nursing again. The nurse he had for the first 2 days has a little 7 month old boy. Her heart was just breaking with mine. She couldn't stand to watch him not eat. When we finally got the right numbers, I could hear her celebrating and running down the hall to tell me. God was so good to put so many amazing people in our path. When he finally did start nursing, he went on a paci-strike. He wasn't about to let us give him a paci instead of nursing again. Now that he believes he gets to eat, he is taking it again. On Wednesday, the first day he could nurse and the first day he was off of the insulin drip and getting shots, we were sent to an all day training for diabetes. We went all day Wednesday, Thursday and Friday. Information overload. I felt like I had taken 5 college courses and been kicked out the door and told to apply this to life and NEVER mess up. His little life depends on it. Tim said that he read somewhere that if you get a diagnosis of diabetes then you have to become a mathematician, a dietician, and a doctor... overnight. Yes!!! That is true! It is incredibly overwhelming. Since we have been home, I have been up almost every hour on the hour, every night. Checking blood sugars, making corrections, calling the Doctor. Yes, I am tired. But, I am hopeful that it will get better. I am sure there are a million and one ways that this applies to my spiritual journey and I am sure that one day, I will tell you about them, but right now, (: that is all I have to say.
Thank you to everyone of you who are praying. Please continue.

A whole new world

I really have so much to say, my heart is full. Of questions, of anger, of FEAR, of sadness, of thankfulness and yes, peace. This last week has been without question the hardest one of my life yet. I know that might be hard to believe. Maybe in a couple of years, looking back I can say different. But not right now. My fight has been for, not only Forest's life, but for my own sanity and spiritual life and physical well being. Also, for my husband and my other 2 kids.Fighting to keep them feeling loved and hopeful. In case our story has not traveled far enough to reach your ears, I will try to tell it quickly.(I don't have long before Forest wakes up)
Monday morning, July 28th, I awoke at 6 a.m. to an 8 month old little boy that was breathing very heavy, sticking out a swollen tongue, had sunken eyes, and disorientation. I grabbed him quickly and tried to nurse him. He wanted to, but couldn't. That's it, I thought, we are going to the emergency room. I changed his diapers and told the other 2 kids to wake their daddy, get me some clothes and meet me at the ER. I put him in the car, started driving and praying. Out loud. About half way there (I could see him in the rear view mirror.) he appeared to stop breathing and started to close his eyes. I called 911, jumped out of the van and grabbed him again and stood on the side of the road until they arrived. He was still breathing. Thank goodness. They put him in the ambulance, put him on oxygen and told me to meet them at the hospital. As soon as we got in, they started assessing him, tons of people, lots of craziness. One of the people said "check his glucose". I don't remember who. Wow. I never thought of that. Yikes! OK... that's interesting... they checked it and yelled out, 498... it's 498. He's in DKA. Whatever that meant. I had no idea. Lot's of needles, lots of blood, an IV, oxygen all on my little boy. They came in and told us he was diabetic, he was in a state they call "diabetic keto-acidosis" and they would be sending him ASAP in the ambulance to St. Francis Pediatric ICU in Tulsa. One parent could ride in the ambulance. Next thing you know, they had me on the bed, feeding him ice chips and holding him and we were rolling to the ambulance. I'm sure you can imagine, from 6 a.m. on until right now, this very moment, I have had adrenaline pumping through my veins. For 2 days straight, a full 48 hours, he did not nurse, or eat at all. He had an IV with fluid to re-hydrate him and an insulin drip. Then, finally, when all of his labs started coming back normal, I was able to nurse.
I'll continue later today... he is awake.