Late Wed Update

Thank you for your prayers.  Things seem fine again - as they have the other times.  So far, this is the 4th day for Joshua being sick.  Poor little guy.  He has had a great attitude about it all too.

My moring started with being woken up by Isaiah to let me know that Joshua had gotten sick.  Isaiah stayed with me and helped me to clean things up too.  I thought that was really sweet - and not something all of mine would have willingly done.  LOL  I've found God to be gracious in giving me a peaceful spirit about all the yuck I've had to deal with this week.  That has been a blessing.  I wish I could say that this was true all the time.  So much to learn. 

Joshua and Rebecca spent most of the day in their rooms.  They both read books and worked puzzles.  Joshua has gotten good use from the gifts he has been given while he has been sick.  He worked on the neatest puzzle today - it's a globe worked in 3D.  I'll try to take a pic and post it soon.  It's very neat!

By lunch, both the sick children were wanting to eat.  They felt fine by afternoon and have been eating well.  It's a curious virus that is for sure. 

Joshua's numbers today were pretty good considering he was sick.  He last number though was his first official LOW.  It was 68.  I was stunned to see that come up.  So was he.  I asked him how he felt and he said his head felt a little funny.  I explained to him that this was what a low felt like.  That anytime he was feeling not quite right that he should let us know so we could test him and see how his blood sugar numbers were doing.  We gave him a juice box and a strong snack.  I expect better numbers at 2am. 

For now, I'm hoping and praying that we are done with throw up and diarrhea.  I really don't want anyone to get sick any more!  I'm thankful it's not worse, but it has been going on for over a week now.  I really thought we were done with it last week. 

I did talk again with the doctor today.  His appt is rescheduled for the 14th.  That was the soonest they could see us.  I really wish it were earlier, but this will be when it is.  In the meantime, we just keep an eye on things and send in his numbers weekly. 

More later.  It's time for sleep. 

Blessings
Leslie

Wed - throwing up ... again

Wow!  This is getting old.  I keep wondering if it's something more than a virus.  It's just odd.  The only thing that make me think it might be a virus is that his brother has been sick too.  Also in a weird sporadic manner.

I could type details, but basically for Joshua, he has been sick in the morning - usually after breakfast.  He is fine by lunch and has been eating well.  I've wondered if it is a reaction to something.  We are going to cut out all milk for 3 days to see if it is a lactose issue.  He has been sick on Fri, Sun, Tue and now today.

I talked with the on-call endocrinologist this morning and she has advised that we keep our doctor appointment today.  I hate to take him in if he has a virus and have prayed for clear answers.

UPDATE:  Well, I guess this is my answer.  One of them anyway.  Rebecca is sick too.  Same type of sickness so I'm guessing we have a virus here.  I've cancelled Joshua's appt for the day.  Hoping we can get it rescheduled soon. 

Please pray for health for our family.  I really don't want this making the rounds - especially for as many days as it has been going on.  Thank you!

Would you pray for healing for our sweet boy?

Thank you,

Leslie

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Update on Joshua, diabetes and happenings here

My mind is just flooded with thoughts of diabetes these days.  So many new things to learn and remember and do.  We are working hard to do the best we can for Joshua.  He is doing an amazing job.  He likes getting things ready for his finger pokes - and he does it all beautifully.  I know that one day he'll be ready to do his own poke and we're waiting.  He can do it when he is ready. 

We had nothing scheduled today, so it was a lazy day at home.  Joshua ended up sick again this morning.  Stomach hurting.  Thankfully it didn't last too long.  It happened after breakfast.  This has happened on Fri, Sun and Tue mornings.  Friday was the worst by far.  I called his dr to talk and she wasn't sure what was going on with him.  I'm going to try cutting back on dairy and also some of his carbs to see if that helps. 

His doctor (from the hospital) also said that she had read his lab results.  One of his antibodies was high which confirmed that the diabetes was caused by an autoimmune attack of the pancreas.  Nothing caused this to happen.  It was not "laying dormant" or waiting to happen.  It was just something that went wrong.  It was most likely a virus that his body responded to and the antibodies just got confused and attacked his pancreas.  It  is not something that could have been tested for or prevented.  It just happened.

He was also screened for celiac disease which came back normal!  Praise God!!!  Always thankful for the good news!

I also talked with Joshua's case manager from the insurance company.  We've been playing phone tag and finally caught up.  She was so very nice!  And knowledgable too!  She asked a lot of questions and also shared information.  She shared resources and tips - and then very kindly sent all that we had talked about to me in an email.  Isn't that great?!  I wish all of our dealings with insurance could be with someone like her.  She has told me that she will be following up with me to see how things are going.  That is really nice.  She gave me information that I needed and hadn't thought to look up yet. 

So, even though nothing much was going on, I just felt overwhelmed with it all today.  I'm not sure why.  Today wasn't much different than yesterday.  I wonder though if it's just because I haven't really had time to cry.  I held it all in at the doctor's office and hospital not wanting to upset Joshua.  It is a lot though and can feel heavy.  When you read things - and I do have to read things - sometimes it is just that one sentence that hits so very hard.  Like the organs that are put at risk due to diabetes.  Mostly, I just try not to think about those things.

After feeling my spirits sink, I knew I needed time to rest and refresh.  I went to my room and just layed on the bed.  I thought I'd take a nap, but ended up just talking to God.  I know He is holding me ... all of us ... as we walk through this and I'm thankful for that. 

I went back and read again in Joshua.  I was reminded to be strong and courageous.  Sometimes though, it is just hard to be strong.  I feel weary.  I know that my strength is from God and I need to remember that.  In chapter 1 verse 8, I was reminded to meditate on God's word day and night.  One more reminder of the importance of hiding God's word in my heart (and helping my children to do the same). 

This book of the law shall not depart from your mouth, but you shall meditate on it day and night, so that you may be careful to do according to all that is written in it; ^(B)for then you will make your way prosperous, and then you will have success.  Joshua 1:8

Not too long ago, I was reflecting on the difficult times after Eliana was born.  It was a time that I clung to God though and learned so much.  Why does it take difficulty sometimes to turn our focus where it needs to be?  I think that God gives us grace, peace and wisdom when we need it and for the situation that we are in.  He doesn't give us the strength to handle something that He has given to someone us.   So, in the midst of this trial, I praise you God because you are good.   

It's late and I need to go to sleep.  Tomorrow (Wed), Joshua has an appointment with an endocrinologist to follow up.  I've been told to expect it to be a long one.  It will be our first outing - taking along meds, supplies for pokes and shots, glucogan (for an emergency), snacks, juice boxes (for lows), log book, ... hmmm, am I forgetting anything?  Seems like a lot.   Thankfully if I forget something, we'll be at a hospital.  So for this outing, no worries.

I'll update more tomorrow.  Sometime too, I'll share about our week at the beach, our "pirate/ocean fun boxes that we started last Monday - the morning before we headed to the hospital and our late Father's Day (tonight). 

Thank you for your prayers for our family.  We are grateful that we are being lifted up.

Blessings

Leslie 

Monday update (not Tues as I first posted)

Sorry this is late in coming.  I can't even tell you where the day went.  Therapy.  Washing sheets - lots of them.  Some cleaning.  Counting carbs and more. 

At this point, we are all well and healthy!!!  Yippee!!!  Praising God for this blessing.  Health is definitely something that is easy to take for granted and being sick really reminds you of what a blessing good health is to each of us.

Joshua is doing really well.  I couldn't ask for him to be doing any more than he is doing.  He is reading labels and helping me to count carbs.  He is learning how to set up his glucometer and his "poker".  He even successfully gave Roger a poke tonight and did a reading on his blood sugar.  (It was fine.)

Rebecca asked to fix lunch today.  This isn't a big surprise as she often fixes lunch for everyone.  What was extra sweet was that she also figured out the carbs for Joshua's meal and measured it all out for him. 

Sorry this is short.  My mind is full - but also sleepy.  I'm not quite used to this new routine.  We are thankful for your prayers for all of us.  I'll try to write more tomorrow.

Love
Leslie

More sickness

Just a quick update.  We have more sickness here.

Isaiah threw up in the night.  He says he feels fine. 

Joshua has diarrhea which began this morning.  His blood sugars are high which is typical (so far) in the morning.  He has no ketones (not dehydrated).  His stomach hurts.  I'm trying to get him  to eat some toast and drink pedialyte. 

Thank you for praying for him.  I'll update as I can.  We are hoping and praying that this passes quickly and that nobody else gets sick.

UPDATE:  Sunday afternoon - Joshua is feeling better and has been able to eat.  This is an odd bug he has, but thankfully isn't lasting too long.  Thank you for your hugs and prayers.  We are hoping this is the end of the sickies for awhile here!

Blessings

Leslie

Our time at the hospital

After leaving the pediatrician, we went home to pack a few things and to head to the hospital.  I made a few phone calls as we were rushing around.  We didn't pack much as our ped told us we would probably just be there overnight.  We quickly learned differently when we arrived.  Roger met Joshua and I at UNC hospital.  Our ped had given us the choice of UNC or Duke.  I told him I really only knew Duke.  He said if we didn't care that he would like to send us to UNC as he thought a lot of the endocrine team there.  That was fine with us. 

BTW, I didn't take this photo as we were entering, but rather leaving.  We entered through the ER.  They have a separate ER for children too which we thought was a great idea.  We arrived before 5pm and we quickly taken to a room.  We saw about 5 doctors (teaching hospital) and one nurse.  (They were all really nice.)  The nurse knowing how hungry and thirsty he was, went to get some of her own drink (a sugar-free mix) to give to him.  He loved it.  Wasn't that sweet?!

I was glad that we brought games.  We spent some time playing Phase 10 (card game).  It helped to ease the tension of knowing you were sitting in an ER waiting for news that wasn't going to be great.

Because they were waiting for lab results, Joshua wasn't fed.  And he was very hungry!!!  One of the doctors later explained that because his body was not producing insulin, the food that he ate was not being broken down and taken to the body to use for energy - instead it just passed through leaving him hungry all the time.  Poor little guy!

He did finally get a tray of food about 9:45 or 10.  He loved it and downed it quickly.  (He got another tray when we got to the room as he was still hungry!) 

The lab results were "positive", but not conclusive on the type of diabetes(will take a week or so?)  Everyone thought we were looking at Type 1 or Juvenile Diabetes.  (There really is no doubt as he does not fit the profile of someone with Type 2.)  This is a life-long disease for which there is no cure ... yet.  He will be on insulin for the rest of his life.  He will have blood sugar checks multiple times a day.  He will also have diet and eating changes.  I'll talk more about all of this and the difference between this type of diabetes and Type 2 in another post.  BTW, we found out that his blood sugar numbers in the ER were 643!  (Normal is 80-120)  They were very surprised that his body was handling it as well as he was.  Most children with numbers like this end up in ICU as their body goes into DKA from lack of insulin.  We are thankful that his was caught early enough to prevent that. 

After more than 5 hours in the ER, we were finally taken to a room.  Joshua was excited to be given a ride.  You have to look for the silver linings wherever you can find them!

After a long, long night with several pricks and pokes, several shots of insulin and not much sleep, he was wondering if anyone would come to see him.  He was excited to see his family and friends.  (I'm missing pics of visitors as well as of doctors and nurses.) 

 

Joshua has received wonderful thoughtful gifts as well.  Things he has loved like books, a puzzle globe, balloons, games, a photo album with pictures (and writing about) a field trip, a movie, sugar free candy, and legos.  He has been well loved on.  As has our family with food from friends.  Thank you all for loving on us!!!  It really helped to bring joy into this time of so many unknowns.

There is a play room at the children's hospital.  It is big with a huge vaulted ceiling with lots of lights.  The room is beautiful with toys, play areas, books, games, computers and more.  It is wonderful.  There are several times during the day when you can go up for an hour. 

There is a large climbing structure in the middle of the room.

In one of the play areas, Eliana goes for the doll or "baby" as she calls it.

Joshua and I played a game of Risk.  We didn't finish before it was closing time and they let us keep the game set up so we could come back later and finish it up.  WAsn't that nice?  For the record, Joshua won!

 

These were Joshua's nurses on the last day - really nice!  They were so encouraging to ME.  They told me that they could tell that Joshua was going to do well.  They could see that he has strong family support and is learning quickly.  They addressed some of my fears and concerns with optimism and encouragment.  One even gave me a big hug!  They were great!

I really liked Joshua's night nurse too and she was with us all three nights.  Positive, encouraging and took time to talk and listen.  I mentioned that I really liked her to our day nurses on the last day.  They said that she had told them about us and that she really liked as too.  :-)  She told us that they really worked to build relationships there - and I could tell.  Our stay here was so very positive!

During the days we had training sessions with our doctors, dieticians and nurses.  We learned more about the disease, how to administer the blood pricks and shots, what to do in the case of an emergency (high or low blood sugar), how to count carbs, what foods he needs to eat and not eat and much, much more.  We were given a LOT of great information to read - both for us and for Joshua.  We were encouraged every step of the way that we could do this and it would all work out well.  We were also told that it would be hard at first and I appreciate their honesty in this.  We had visits by the chaplain, a man with an ice cream cart and volunteers with books.  Did I mention that this is a really nice hospital!

Joshua liked getting a ride in this transport.  We had seen them when we walked around the hospital one evening.  He wanted a ride then and I told him that he might get one when he left.  We also visited the butterfly garden which is a nice little outside courtyard decorated with beautiful outdoor artwork, the cafeteria (Joshua carefully checking the carb counts on foods) and the lobby area which had a Victorian dollhouse which was amazing.

This is Joshua's room.  It was big and nice!  One of the nurses said that they called it the "good luck" room because all of the patients in there did really well.  I have to hope that that would be all of the rooms!

They have decorated the children's area so nicely - including pictures painted on the windows outside the rooms and butterflies on the ceilings of the rooms.

Outside of the hospital in the parking deck - about ready to go home!

Our experience at UNC Hospitals was very positive!  I"m so thankful that we live so close to such excellent medical care!  I never knew we would be taking advantage of the hospitals as much as we have.  We'll be coming back here regularly for checks, clinics and teaching session with a dietician.  We have a follow-up appt next Wednesday.

In the midst of all of this, we continue to see God's hand at work - in the staff at the hospital, in our friends and family.  While I am not thankful that my sweet son has this disease, I am thankful that we have a strong and faithful God walking with us every step of the way!  Thank you again for your prayers and encouragment!!!

Blessings,

Leslie

I'm sure I've left things out.  This was a long post and lots of switching back and forth between writing and uploading pictures.  If you have questions, please ask!  :-) 

Sat Update on Joshua

He is feeling much better!  Thank you for your prayers!  He was able to eat some toast during the day yesterday.  He ate soup for dinner.  His numbers weren't too bad either.

Today he has been eating normally.  No recurrance of being sick either!  Yippee!!!

His numbers have been pretty good most of the day - though he was down to 78 before bedtime!  I was stunned!  He had juice in addition to his bedtime snack.  Hopefully that will help balance out his numbers.  We'll be checking again at 2am.

I'm working on uploading pictures and details from our hospital stay.  It may take me awhile though.  I'm behind on most everything - including emails.   I apologize if I owe you one, I'm working to get through things, but just going slowly.

Thank you again for your prayers for our sweet Joshua.  He has been amazing with all of this.   I feel like I'm doing better with the finger pokes too.  Not quite as stressed and having more successes too.  Joshua even asked me today if he could try it sometime - though he also said he didn't want to do it now!  I assured him that he could do it when he was ready. 

God is faithful and good.  I continue to learn more about letting go and trusting even when things make no sense. 

Off to bed soon as that 2am alarm is quite a rude wake-up.  Though probably not as rude as it is to be woken up to have your finger poked.  ;-)

More tomorrow.

Blessings

Leslie

Fri afternoon update on Joshua

Thank you for your prayers!!!

I did talk with the doctor.  The plan is to watch his blood sugars and to check them every 2 hours if they are far from normal.   More opportunities to practice. 

The blood prick at 12:30 went pretty well.  I still had to do it 2 times.  The first couldn't get enough blood (I think I was too close to the center of his finger), the second one worked like a charm.  We did lots of warming and massaging.  I'm hoping that the second one is our new track.  :)

I talked with Joshua about how brave he is.  We talked more about the verse God gave us the other day - Joshua 1:9.  We talked about how God had to tell Joshua 3 times to be strong and courageous.  I don't think that this meant that Joshua had no fear.  Certainly being brave does not mean that there is no fear.  It does mean doing what you are called to do in the face of your fear.  We are both having to do that as we learn how to manage his diabetes.  It is a learning curve for our whole family. 

Something neat happened today that I know was God just reminding us of His love for us.  After his blood draw, I brought up a card that he had received in the mail.  On the front of the card was a verse ... Joshua 1:9.  We talked about how  God sometimes gives us the same verse more than once because He really wants us to hear it.  I love that!  Thank you to the GAA staff for sending this sweet card!

His numbers at lunch were good (in the normal range in fact!) and he hasn't gotten sick again.  I just gave him some toast, so we'll see.  I also checked his ketones which were small.  This is another thing to keep an eye on so that he does not go into DKA (long name for too many ketones in urine while having diabetes).  It is something that would send him to the hospital.  They were surprised that he was not in this state when we brought him in.  He would have been had we come in later.  Thank you God.

I'm hoping we can manage this and that it will pass quickly.  Wondering if it is viral or a reaction to something he ate?  Not sure how I would know either???  How soon would something like that show up?  And is it different if he is newly diabetic with his numbers still really fluctuating greatly!!!  (Differences of more than 250 in just a few hours)

That is probably a good question for the doctor.  I'll update as I can.  Need to go check on my boy and try to get something to eat myself.  Also have a few others calling out to me.  More later.

Thank you for your prayers.  God is good!

Blessings

Leslie

Joshua is throwing up

Could you pray for us as we learn how to manage yet another new thing?

My son Isaiah was throwing up 2 nights ago. It wasn't too bad for him. Joshua obviously has a lot more going on. I'm reading my book on sick care and I know we can handle this. It's just a little scary and I'm trying to be brave and strong for Joshua. He is handling everything so very well. I know though that this is hard for him too. He feels crummy right now.

The finger poke went better this morning though it still took me two tries. I will be using some of y'alls tips to help in the future - thank you!  I know that this will get easier, but may take some time.  I'm not a medical person (though I've learned a lot in the last few years).

I've called the doctor and am waiting for a return call. Will post more as I can.

Thank you for your support and prayers!!!    I do greatly appreciate your encouragment!  There is so much that is new and I'm still learning.  This diagnosis is just 4 days fresh and it's a bit overwhelming at times - for all of us.  All of the comments here have been wonderful.  Thank you.

Will update more as I can.

UPDATE 1 - 45 min after throwing up, he also has diarrhea.  :-(  He is miserable.   Thank you for praying for him.

Love
Leslie

Prayer request for any night owls reading this

I'm trying not to worry and I have prayed, but still the uncertainty of all of this is a little unnerving.

Joshua has blood checks done 5 times per day - before breakfast, lunch and dinner, before bed and at 2am.  His numbers have been coming down since Monday.  Most of his readings on Mon were over the highest reading (500).  One lab gave us results of 643.  That is really, really high!

For the last 2 days he has been in the high 200s.  Last night (2am) he dropped to 118.  That is in the normal range, but a really big drop.  I talked with the drs and nurses about this and my concern that he would drop even more once his day numbers were not so high.  They did adjust his night shot doses to accomodate this.

Tonight, his reading before dinner was 288.  His meal was pretty low carb and after doing his next reading I wondered if it was too low.  At 9pm was 128.  He had a good healthy snack (with some good carbs in it) and no shot of insulin.

All of this background (which may be more than you want to know), to ask that you would please pray that his numbers are alright tonight.  I'll be checking him at 2am and just want him to be in the normal range.  Not dropping much from the last number would be great!

I know we'll have to deal with low blood sugars, but I'd love to skip that one tonight.

Sorry this isn't much of an update - more tomorrow as I'm able to.  There is a lot to do here and to catch up on and children that just want mommy time.  :-)

Love
Leslie

UPDATE: Just finished his poke. It took 4 tries as I just couldn't get any blood. After the third try, he asked me to stop poking him.

I switched needles, hands, fingers. *sigh* This is discouraging. The upside though was that I could tell he wasn't "low". I was stunned at his numbers though. 388!!! Yikes, what a jump.

This feels like a rollercoaster. It is hard to do anything that hurts your child, even when you know it is for the best. These finger sticks are just hard for me. Thank you for your prayers!