It is looking more and more everyday like S has started his "honeymoon period." And no, I don't mean what the name implies. If you ask me it is a ridiculous name!! What is it? Well before S's diagnosis his pancreas was trying REALLY hard to do more work than it was intended to do, and it was failing...thus the diagnosis...then after diagnosis, "we," his external pancreas, did the work for it and allowed it to breathe a sigh of relief and take a much needed break...but it doesn't want to be out of a job forever. So, it finally kicks back in to release its own insulin for awhile, "the honeymoon," until every last islet cell is destroyed...the death of the pancreas... It is usually characterized by a decrease in the need for injected insulin for awhile...which is a good thing, but until you realize it is here, it usually means a lot more low blood sugars, until you find a happy dose to do keep his blood sugars controlled along WITH the pancreas. Well, if I had a vote I'd much rather the pancreas keep it's job!! But since it can't, this is a little more challenging of a time. Tonight I was all ready to go to bed...I had the alarm set for 2am, as I have every night since coming home from the hospital, but when I tried to close my eyes, I couldn't...the little voice..."You better just go check now." Although 2 hours doesn't seem like a long time...and it isn't when you are taking about sleep ;), 2 hours is a REALLY long time if his blood sugars are falling with no way to correct or recognize it! So out of bed I went to check on my sleeping boy...he sort of sleeps through the pokes now, but he tosses and turns every once in awhile while I try to steady his hand for the poke...tonight was one of this nights...but I managed to get it and...low...Thank you Lord for not letting me rest until I assured my baby was ok!!! So with droopy eyelids, half awake, half asleep he gets woken up to eat some carbs...a recheck, and momma can go back to sleep for a couple more hours...although I get much less sleep some nights, my baby is soooo worth it!!!! I love my kids and no sacrifice is too much for them!!
Monday, March 25, 2013
Sunday, March 24, 2013
My brave boy...
We had our first teaching visit with the endocrinologist nurse on Friday. She was VERY pleased with how things were going!! :) Yay!!! She wanted to know if S had tried to do any of his own injections yet....well, we had talked about it, but he just wasn't ready...momma didn't want to push...yet. The nurse told him how proud of him she was so far and issued him a challenge: "I want you to TRY at least once this week to give your own insulin injection!" S didn't seem too sure about that, but there is something about challenges and my children...;)...they can't seem to avoid it once the challenge faces them... ;P Yep, just like their momma, the challenge drives them, until they see success!! :) So, suppertime rolled around and I asked S if he was ready to try the challenge..."I'm too scared, but I think I can TRY...." I drew up the correct dose, handed him the syringe and said, "Here ya go, give it try!" He pinched up the skin on his leg and SLOWLY poked it and delivered the insulin, just like a PRO!!! :) Then, he gave me a BIG grin and said, "Mom, I think I like doing it by myself better!!" PROUD MOMMA!!! This is one of the sweetest, bravest little boys I know!!! Guess what? Bedtime rolled around...and...you guessed it...he ASKED to do it by himself!!! That's my boy!!! :)
Always look for blessings...
So we are just three weeks after S's diagnosis. Things have been going better than I expected. We recently celebrated two very important milestones, at least in my eyes...Right from the very beginning I wanted S (and the rest of the kids) to be VERY involved in his care, not because I don't want to do it on my own, but because I feel like if he can participate in this, he will accept it and be ready to meet whatever challenges await him with knowledge and determination!! :)
We took the first day at home after the diagnosis to educate the kids...what is diabetes? What do we need to know to take care of S? What if S has a very high blood sugar, or a very low blood sugar? What can all of us learn through this about our own health? It will be a lifelong lesson, but I think they mastered the basics!! :)
We also started right away encouraging S to check his own blood sugars. He was so scared at first. Who isn't afraid to inflict pain on themselves? But, he DID it!! :) He even spent a little time with his big brothers telling them what it felt like and poking them too...;) Ok, I think he enjoyed that a little more than doing it on himself...(hehe).
The other important event we recently celebrated was S's 8th birthday!!! Mom always tries to ensure each kid feels VERY special on their birthday!! And, this birthday was no different!! We were determined to help him have a normal, and even an extraordinary birthday!!! Although, I must admit, this was a birthday that made me more emotional than any other!!! We started the day off with a NO SCHOOL day!!! Because we homeschool, we have the liberty to give each child the day off of school on their birthday...and we do it!! Afterall, a birthday is just like a holiday...a day to be CELEBRATED!!! Then, each child gets to choose whatever they want to eat for all three meals of the day!! Yes, even if that means chocolate for breakfast!! ;) It only happens once a year right?? :D
Samuel chose fairly normal things though...an omelet and fruit for breakfast, a quesadilla for lunch and burgers for supper! I also try to buy or make a special birthday cake for them, with whatever character or theme they choose...that was the emotional part...S woke up and was greeted with hugs and "Happy Birthday's." Then, he thanked us with a smile, turned to momma and said, "But Mom, I'm not going to get to eat any birthday cake now, am I?" :( Oh yes, YES you will honey!!! We just have to count carbs, what kind of a birthday cake do you want? "A racecar one!!" Ok, DONE!! :) We had a wonderful 8th birthday, despite diabetes ;P. He even said, "Mom this was the best birthday EVER!!" :D Then..." I wish I didn't have Diabetes, but its ok, I know there is a reason for it..." Oh, how my heart ached at that comment...I wish he didn't have to have it either. I wish I could have it instead of him!! But, that wasn't God's plan I guess... Then, we talked about how we can pray for a cure for him and other kids...then, the thought HIT me...now we WILL be praying for a cure for a disease that affected our family, and countless others...hmmmmm, would we have prayed for a cure for these sick kids before??? Sadly, probably not...not that I didn't care about kids with diabetes...I do, but I guess the thought never crossed my mind to pray for a CURE for them...now it is a regular part of my prayer list!! See? There ARE blessings in CHAOS! :)
We took the first day at home after the diagnosis to educate the kids...what is diabetes? What do we need to know to take care of S? What if S has a very high blood sugar, or a very low blood sugar? What can all of us learn through this about our own health? It will be a lifelong lesson, but I think they mastered the basics!! :)
We also started right away encouraging S to check his own blood sugars. He was so scared at first. Who isn't afraid to inflict pain on themselves? But, he DID it!! :) He even spent a little time with his big brothers telling them what it felt like and poking them too...;) Ok, I think he enjoyed that a little more than doing it on himself...(hehe).
The other important event we recently celebrated was S's 8th birthday!!! Mom always tries to ensure each kid feels VERY special on their birthday!! And, this birthday was no different!! We were determined to help him have a normal, and even an extraordinary birthday!!! Although, I must admit, this was a birthday that made me more emotional than any other!!! We started the day off with a NO SCHOOL day!!! Because we homeschool, we have the liberty to give each child the day off of school on their birthday...and we do it!! Afterall, a birthday is just like a holiday...a day to be CELEBRATED!!! Then, each child gets to choose whatever they want to eat for all three meals of the day!! Yes, even if that means chocolate for breakfast!! ;) It only happens once a year right?? :D
Samuel chose fairly normal things though...an omelet and fruit for breakfast, a quesadilla for lunch and burgers for supper! I also try to buy or make a special birthday cake for them, with whatever character or theme they choose...that was the emotional part...S woke up and was greeted with hugs and "Happy Birthday's." Then, he thanked us with a smile, turned to momma and said, "But Mom, I'm not going to get to eat any birthday cake now, am I?" :( Oh yes, YES you will honey!!! We just have to count carbs, what kind of a birthday cake do you want? "A racecar one!!" Ok, DONE!! :) We had a wonderful 8th birthday, despite diabetes ;P. He even said, "Mom this was the best birthday EVER!!" :D Then..." I wish I didn't have Diabetes, but its ok, I know there is a reason for it..." Oh, how my heart ached at that comment...I wish he didn't have to have it either. I wish I could have it instead of him!! But, that wasn't God's plan I guess... Then, we talked about how we can pray for a cure for him and other kids...then, the thought HIT me...now we WILL be praying for a cure for a disease that affected our family, and countless others...hmmmmm, would we have prayed for a cure for these sick kids before??? Sadly, probably not...not that I didn't care about kids with diabetes...I do, but I guess the thought never crossed my mind to pray for a CURE for them...now it is a regular part of my prayer list!! See? There ARE blessings in CHAOS! :)
Saturday, March 23, 2013
Coming to grips with the diagnosis...
After an ambulance ride and admission to the pediatric intensive care unit, I felt like I could finally breathe again. We are here...they will figure out what is wrong with him...he is going to be okay. The doctors examined him, and again, we received, "We just cannot believe how GOOD he looks despite how BAD his lab work is!!" I knew they were right, and yet I knew it was because S's life was in the Lord's hands. At the same time, I still did not think he looked good. I wanted my baby fixed, I wanted him to look like the happy, active kid that he always is....they ran several tests and told us they were 75% sure we were just dealing with a new onset of type 1 diabetes, with DKA (diabetic ketoacidosis), but they were running other tests to confirm the other 25% uncertainty...the next several hours following our arrival he received IV fluids, had labs done every 2 hours, and blood sugars hourly. He slept and we waited...I have to admit I kept waiting for the doctors to come in and tell us they found something else...that he just had an infection of some sort that would clear up eventually...that it really wasn't diabetes...
The rest of the kids, and daddy, finally arrived and were a welcome distraction from thinking about this diagnosis...about DIABETES...and some very precious friends too. They drove almost 2 hours to comfort me...I can't even begin to say how much I appreciated that, and how much they mean to me...we talked, prayed and watched my baby sleep...until at last everyone had to go home.
As he lay there sleeping, I was overwhelmed with emotions...I was SOOOOOO thankful that he was ok, I was overwhelmed thinking about dealing with a lifelong illness, I was terrified that I had almost lost him, I was grateful that even though he was quite sick...he wasn't fighting for his life, like some of the other children in the PICU. They were so busy there, so many pediatric patients, so many sick, sick babies and kids...some of the parents had been there for 2 months with their sick kids!!! :( But, my baby? He was going to be ok :), even if he does have a chronic illness!! Thank you for blessing me Lord, and please use me to be a blessing to one of these other parents!!
I did try to sleep a little too, but that didn't work out so well with the frequent distractions of the lab work. We had an early rising too, S was finally starting to feel better!!! :) He was wide awake and asking to eat breakfast and play the Wii at 5:30am...yep, now I KNOW he is starting to feel better!! :) We had to wait for the endocrinologist to come see him first, before they would let him try to eat. In the meantime, we spent some time cuddling!! <3 He is such a precious child!!! Such a fighter and so brave!! A short time later Daddy and the rest of the kids arrived. Everyone was so happy to see S feeling MUCH better!!! :) His siblings were very worried about him.
Finally, around midmorning the endocrinologist came..."I know you are probably waiting to hear me say, he does not have diabetes...but I am here to tell you that I am very sorry, but your son does have diabetes...." Even though I knew that was true now, he was right, I was hoping he was going to say it wasn't....although, I am thankful my baby is here and alive, I mourned the fact that his childhood, his life, was never going to be the same......I worried if S understood what was happening to him, or did he think, I was just sick and now I am better? The endocrinologist did an excellent job of telling us, educating us, involving the kids, and most of all, telling S this does not have to define WHO he is...he was right, it doesn't, GOD defines who he is!!! :) We spent some time with S then, explaining to him that God has some very special plans in store for his life...and, although we do not know why this happened, we DO know God will be with us every step of the way!!! Then came the explaining and the questions... The hospital had given us a book written for kids about a child who was just diagnosed with diabetes, so S and I curled up in his hospital bed and read it...I love to read to my kids, but I have NEVER had such a hard time reading to them before...I could not stop the tears...I tried, I tried to be strong...but my heart ached!! I managed to get through the book, and I looked at S...he was so quiet during the whole story..."Do you understand?" I asked. " I think so Mom, but is it contagious?" MORE TEARS :(, and a BIG hug, as I assured him it was not!! Then, we talked about grandpa and his Type 2 diabetes...S thought it was neat that him and grandpa had something so important in common, and he gave me a big grin! :) That boy just has a way of melting my heart I tell ya!!! I told him again how brave and strong he was, and that momma and daddy and God were so proud of him....I knew we were going to be ok...God is working something BIG in this boy's life!!
The rest of the kids, and daddy, finally arrived and were a welcome distraction from thinking about this diagnosis...about DIABETES...and some very precious friends too. They drove almost 2 hours to comfort me...I can't even begin to say how much I appreciated that, and how much they mean to me...we talked, prayed and watched my baby sleep...until at last everyone had to go home.
As he lay there sleeping, I was overwhelmed with emotions...I was SOOOOOO thankful that he was ok, I was overwhelmed thinking about dealing with a lifelong illness, I was terrified that I had almost lost him, I was grateful that even though he was quite sick...he wasn't fighting for his life, like some of the other children in the PICU. They were so busy there, so many pediatric patients, so many sick, sick babies and kids...some of the parents had been there for 2 months with their sick kids!!! :( But, my baby? He was going to be ok :), even if he does have a chronic illness!! Thank you for blessing me Lord, and please use me to be a blessing to one of these other parents!!
I did try to sleep a little too, but that didn't work out so well with the frequent distractions of the lab work. We had an early rising too, S was finally starting to feel better!!! :) He was wide awake and asking to eat breakfast and play the Wii at 5:30am...yep, now I KNOW he is starting to feel better!! :) We had to wait for the endocrinologist to come see him first, before they would let him try to eat. In the meantime, we spent some time cuddling!! <3 He is such a precious child!!! Such a fighter and so brave!! A short time later Daddy and the rest of the kids arrived. Everyone was so happy to see S feeling MUCH better!!! :) His siblings were very worried about him.
Finally, around midmorning the endocrinologist came..."I know you are probably waiting to hear me say, he does not have diabetes...but I am here to tell you that I am very sorry, but your son does have diabetes...." Even though I knew that was true now, he was right, I was hoping he was going to say it wasn't....although, I am thankful my baby is here and alive, I mourned the fact that his childhood, his life, was never going to be the same......I worried if S understood what was happening to him, or did he think, I was just sick and now I am better? The endocrinologist did an excellent job of telling us, educating us, involving the kids, and most of all, telling S this does not have to define WHO he is...he was right, it doesn't, GOD defines who he is!!! :) We spent some time with S then, explaining to him that God has some very special plans in store for his life...and, although we do not know why this happened, we DO know God will be with us every step of the way!!! Then came the explaining and the questions... The hospital had given us a book written for kids about a child who was just diagnosed with diabetes, so S and I curled up in his hospital bed and read it...I love to read to my kids, but I have NEVER had such a hard time reading to them before...I could not stop the tears...I tried, I tried to be strong...but my heart ached!! I managed to get through the book, and I looked at S...he was so quiet during the whole story..."Do you understand?" I asked. " I think so Mom, but is it contagious?" MORE TEARS :(, and a BIG hug, as I assured him it was not!! Then, we talked about grandpa and his Type 2 diabetes...S thought it was neat that him and grandpa had something so important in common, and he gave me a big grin! :) That boy just has a way of melting my heart I tell ya!!! I told him again how brave and strong he was, and that momma and daddy and God were so proud of him....I knew we were going to be ok...God is working something BIG in this boy's life!!
The diagnosis
Although we have a family larger than most people are comfortable with...we thoroughly enjoy ourselves!! :-) We enjoy spending lots of time together as a family!! We are always finding fun activities to do and try. :-) Our latest fun, winter activity we enjoy is skiing. Daddy used to work for a ski resort, and is an expert skier, and momma, well, let's just say momma is a novice and doesn't mind hanging out with the little one in the chalet. ;-) As the ski season is wrapping up for this winter, we decided to go one last time, and it became a trip we will never forget. We planned a trip to a nearby resort town and were ready for a weekend of fun...it started on the last Thursday in February...everyone was having a great time except for S...he didn't seem to be having as much fun this time around...he seemed tired and like he was coming down with some kind of sickness. Now, as a mother of 6, who is also an ICU RN, you can imagine I have dealt with my fair share of illnesses...and I don't usually get too excited when the kids are sick...Although, that nurse thing...sometimes it's good, and sometimes it's bad...there are times when I'm like...nah, they are breathing, their temp isn't over 104, there isn't any signs of bleeding or immediate danger, so they must be FINE...and then, there are those times when you are like...I think my kid has meningitis, or maybe it's (insert any other crazy, completely unlikely, dramatic illness most parents have never heard of here) ;-p I think my nurse friends would understand my sentiments. ;-) Anyway, S's symptoms were so nonspecific...tired, little bit of a sore throat, no appetite, no fever, malaise...the first thing that popped into my mind was like...I bet it's strep or mono...great, we are on vacation...I guess I'll be taking him to urgent care tomorrow...then, he started chugging water like crazy...then a crazy thought popped into my head...HE'S ACTING LIKE A DIABETIC...NOOOO...I'm just being a paranoid nurse-mom again...that isn't possible, we don't even know anyone in our family that is diabetic...STOP BEING PARANOID...it's strep, it's gotta be, we will go to the doctor tomorrow...so, everyone went to bed for the big day of skiing, and an urgent care visit in a strange city.......but I guess God had other plans for us...through the night poor S got up a couple times and threw up, then snuggled into bed with momma...and momma knew for sure we HAD to visit urgent care in the morning...but...7:15am my sweet baby crawled into bed with me again...I took one look at him and was TERRIFIED...he was breathing very shallowly and very rapidly, he was clutching his right side of his belly saying it hurt sooooo bad, he was ashen, he looked like He was dying...DADDY, we have to go to the ER NOW!!!! All the other kids were sleeping yet, and daddy knew where the hospital was and there was no time to lose...he had to get to the hospital NOW!!!!! So, terrified momma had to stay behind with the other sleeping kiddos...I was shaking, I knew something was terribly wrong...was he septic? Did his appendix rupture? What is wrong with my poor baby? What if he stops breathing in the car on the way there? No, No, No...I will NOT entertain that thought..."What time I am afraid I will trust in thee..." I prayed harder than I ever have before!!! And, with shaking hands, I asked everyone I knew via facebook, text and telephone to please pray for my baby!!!! Then I realized daddy left his phone at the hotel...how would I know what was wrong or if they made it there??? I called the hospital and explained everything and asked them to please call me when he arrived...they assured me they would...then a few minutes later, thank you Lord, they made it there!!! They took his vitals, daddy reported them to nurse-momma...WHAT?????? His temp was 95.4...oh my word...he is SEPTIC? And he is in SHOCK?? Nurse-momma hated herself for not just taking him in last night. :( Then a call back from daddy..."Ummmm they think he has diabetes..." Noooooooooo...it couldn't be...could it?????? Then, "He needs to go to ICU in Children's Hospital by ambulance..." A sigh of relief...he is going to be okay though...but DIABETES???? REALLY????? Daddy had to leave him briefly to come back to the hotel to get me and the other kids...finally I can hold my sick baby!!!! I was so relieved when I saw him in the ER, he looked soooooo much better, although still very sick....I was going to ride with him and thanked God for saving my baby!!!! Daddy said, the doctor knew almost immediately what was wrong with him..."it was like they were waiting for him..." Thank you LORD!!!!!! Then nurse-momma wanted to know how bad it was..." What were his ABG's? "Are you a nurse? Well, they were bad, real bad. We couldn't believe he was awake and talking to us... his pH 6.94, bicarb less than 3...." I had a heart attack right there!!!!!!!!!!!! THANK YOU LORD FOR SAVING MY BABY!!!!!!! If you don't believe in miracles, you don't know how AWESOME my God is!!!!!
Are there blessings in chaos?
Our family has endured many changes and challenges in the past several weeks. I guess the diagnosis of a chronic illness will do that to you. It has been a bit of a bumpy ride...but we know in the midst of this chaos there are also many blessings to be uncovered...join us as we journal our experiences with raising a newly diagnosed diabetic child, along with five other blessings (yes, you read that right SIX blessings in all ;-))
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