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!

We are home!

I don't have time to type much now, but just wanted to update that we are home.  We checked out late this afternoon.  It's a little scary, but also good to be home.  UNC hospital was a great place to be for all of this!

I did my first sucessful blood draw and reading (had to do 2 readings at the hospital and there was just never enough to do the 2nd read - our machine).  I also gave a shot and measured out portions of a healthy meal.  Joshua was a wonderful help in all of it.  He has been amazing. 

I'll write more as I can later, though I'm going to have to adjust a lot of what I'm doing.  I know going to sleep earlier will be more important as we look to getting on a routine around here with blood checks, shots and meals. 

Thank you for your prayers and encouragment.  I'll do my best to answer - but do know I'm reading and appreciate so very much your words!

With love
Leslie

 

Wednesday - dinner time

Just a short update while I have a few moments.  I started this in the early afternoon, but then we had some visitors and meeting with the doctor and now it's dinner time.  I'll try to quickly finish this and perhaps post more later if there is more time. 

Thank you for your prayers and words of encouragment.  We do appreciate them.

Thank ypu also for the advice on not looking things up.  I really wasn't trying to look up info - just trying to find out when our local walk for Juvenile Diabetes was occuring.  It was then that I stumbled on to the other page.  I have plenty of info here to read and am just going to look at that.

I think we'll be staying another day in order to make sure that we are comfortable with all we need to do to treat Joshua during the days and also in the event of an emergency.  I know that some of my issues with leaving early are from leaving early after Eliana's heart surgery.  This ended up being a difficult thing for us when we got home.  I talked about this with the night nurse and she said that she has only sent one family home as early as we would be if we left today.  That made me feel better and I don't feel like we are being rushed out of here either.  Everyone has encouraged us to take the time we need here.  That is a really nice thing!

We've met with one of the doctors this morning to review information and esp what to do when/if Joshua has low blood sugars.  This is a potentially dangerous thing for him,  It's good to know, but can also be a little overwhelming to think about too.  I'm trying to focus on the facts which can help me to remain calm, but for me, there is a little boy behind all of these facts that bring in my emotions and heart, 

I've done the insulin shots several times now (at least 4?) and am pretty comfortable with giving it.  The hardest part is mixing the different types into one shot and getting the doses completely accurate (with no air bubbbles) and seeing the tiny half markings on the bottle. 

I did the first finger prick today too.  I was caught a little off guard - just someone walking in and asking.  That was probably good as it didn't give me a lot of time to think about it.  I still started tearing up.  I am not sure why I'm so uncomfortable with this part of it, but I am.  The doctor and others seem surprised that I'm OK giving the shots and not the prick.  I can't explain it, but hopefully I'll get more comfortable with it.  I'm sure I will as I will be getting a lot of practice. 

Just got a phone call from Roger and we have a sick child.  :-(  Throwing up.  One more good reason to stay.  Would you pray for health and healing for our family?  I really don't want this sweeping through the family and most especially not Joshua. 

More to write, but need to go read with Joshua.  Thank you friends for your visits, gifts and phone calls.  We appreciate all of them!  If you have sent an email, I most likely have not gotten it.  I use webmail here and most of my mail has gone to my home where I can't get to it until I'm home too.  Confusing, but it is the way it is.

***  More from the afternoon.  We visited the playroom which is really nice.  I'll post pics later if I can.  We (Roger and I) had another meeting/teaching time with the doctor.  She is really nice and does a great job both encouraging and explaining things to us. 

Roger also got a turn to try the finger prick and giving shot.  Neither of us have been successful in using our testing machine (can't remember the name of it) because so much blood has to go for the test strip for the hospital that there hasn't been enough left for our strip.  Roger did let me test his blood (and it looked great!) so we could see if the machine worked. 

This is feeling factual.  Things are going pretty well.  We are learning a lot and it is a little overwhelming.  The need for structure and details in order to manage this something that doesn't come naturally for me.  I am organized (not structured).  I've learned a lot though with Eliana about how to manage things outside of my comfort zone.  This will be a challenge, but one that I'm sure we'll all learn to manage together.

I wanted to post some pics, but I have to say thank you to our friends that have been sooo sweet!  Thank you for bringing food to my family at home, taking the kids swimming, visitors for Joshua, balloons, cards, games and even a photo album for him, a new CD and trail mix for us too.  We are so blessed to have such dear friends caring for us - in prayer and in other ways too.  Thank you - all of you!!!

As I was praying and feeling a little overwhelmed, God reminded me of a verse.  I thought was a good one for a number of reasons.  I loved where it is found too.  I also appreciated that this is a verse that I learned from a children's heart and it also reminded me how important it is to hide God's word in my heart.  (And to help my children to do the same!)

"Have I not commanded you?  Be strong and courageous!  Do not be terrified, do not be discouraged for the Lord your God is with you wherever you go."  Joshua 1:9

God is commanding us to be strong and courageous and not to be overwhelmed or discouraged by all that is going on.  How can we do this?  By knowing that God is with us wherever we go.  I love the promise in this!  God is good. 

Blessings

Leslie

Tuesday - Early afternoon

Things are going pretty well.  Joshua's numbers are still high.  They were lower this morning (225) and then went up again (385), even after the insulin so he got an extra type of insulin.  Two types in one shot.  It will be a juggle to try to figure out what works best for him.

We are still waiting to see the doctors.  Lots of waiting in hospitals. 

If you want to phone, my cell number is the best to call.  The connection at the hospital doesn't seem to be as strong.

I gave Joshua a dose of insulin.  We both handled it well.  I didn't have much time to mentally prepare.  I said a quick prayer and just did it.  I have practiced some on a rubber ball, but that is not quite the same as poking your child.  It reminded me of all the times I had to insert an NG tube into Eliana.  I remember asking for prayers for that soooo many times.  It was hard.  It did get a little easier, but was never easy.  I think this will be easier - but maybe I just don't really understand what lies ahead. 

I started doing some reading and found a site for a local group.  It was going well until I found this page.

http://www.jdrf.org/index.cfm?page_id=101307

Don't go there if you aren't ready to handle this.  (My sweet daughter, please don't read this yet if you are reading my blog.)  It just made me tear up and want to sob - but stuff it in as I'm sitting here with my little boy.  I'm not sure i was ready to read that.  Honestly, I didn't even read it all.  I read the story of the little girl and then a line or two and just clicked off.  It was too much to imagine that being my little boy. 

We keep hearing how it will all be fine.  Though one doctor has been very frank in saying it is going to be hard.  This is not something that is going to "get better".  Though we will begin praying earnestly for a cure (for which there is great hope!!!).  This is something that will require many pokes/sticks a day.  For now, it looks like at least 3-4 each of sticks and shots of insulin.  :0(  That is a lot for a little boy to handle. 

For now, he is enjoying "room service" and is doing well with all of the poking.  Thank you so much for your prayers.  More later. 

Love

Leslie

PS  I'm having a hard doing much more than check here on my blog.  If you want to reach me, you can post here or phone.  I appreciate hearing from you!

PPS  A poster had mentioned the connection between diabetes and celiac.  He is being screened for that too.  I'm hoping that there is nothing there.  I appreciate you mentioning this.  I think that they are screeing for several things - thyroid, celiac and I don't remember the rest.  It's a lot to take in.