Visit to ped, talks with endocrinologist

Well, today (Sunday) has been more of the same.  Isaiah threw up during the night.  :-(

Joshua's numbers were fine at breakfast (210), had insulin and breakfast.  Within 2 hours, he told me that he felt badly and wanted to be checked.  49.  He is doing a LOT of crashing which is very concerning to us and to his doctor.  Gave him juice and crackers and got him back to 108. 

He continued to feel badly and had loose stools.  Another 2 hours and he is low again.  Ate lunch and called the pediatrician.  I was thankful that Eliana's wonderful doctor (ped) was on call and I was able to get an appt with her at 1:40.  Even though we have other children that have been sick, Joshua has been sick on and off most of the last 10 days.  That is just too much. 

It was good to see her and she joked with me asking if I was going to become a nurse when I grew up.  She is a great doctor and tenaciously fought for Eliana in so many ways.  I knew she would do the same for Joshua.  We talked about his history and she was impressed with my notebook(s) detailing everything and the sheet of info I'd typed for her that I knew she would want regarding his sickness and when it occured.  She told me that she thought Eliana had prepared me well to handle this.  I agree.

We talked a good bit.  She was glad that knowing the other children had been sick that it seemed more like a virus than something terribly wrong with Joshua.  It may just be the combination of the diabetes and the virus is just too much for his little body right now.  Joshua was able to give "samples" to be tested.  He even commented that being a doctor was a great job because you got to examine "pee" - and get paid for it.  LOL  Love a little boy's sense of humor.  (I hope this doesn't gross anyone out!  Well, a lot of this is gross, so sorry!)

While we were waiting, she called Joshua's endocrinologist (who is also wonderful!).  They talked for awhile and then I also talked with her.  What I didn't realize is that while I wasn't standing there, that one dr had wanted Joshua admitted to the hospital.  The other told her I could handle it.  Then how about the ER?  The other thought he would be better at home.  That is a great vote of confidence, though a little unnerving too, kwim?

Here are the changes.

• Change in meds.  One has been eliminated and the other is to be based on carb counting.  A new med is being added (lantus).  The hope is that this will eliminate some of the spikes we are seeing in his blood sugar levels.

• Joshua will be getting an ultrasound tomorrow of his kidney to see if there is anything going on there of concern.

• Lab cultures will hopefully be back in a couple of days and we will have more information from that.  We will see the ped again on Thur

Joshua felt really crummy the first half of today.  He even asked me if he would get to a point where he didn't have stomach aches every day.  :-(  I assured him that he would.

Joshua's endo dr called this evening.  She has been so wonderful about emailing and calling us!  She is really concerned about Joshua and even told me that.  She is concerned about how many lows he is having.  (Several a day)  We talked about his new meds regimen and she wants his  numbers tonight in an email and wants me to page her in the morning to discuss his numbers so we can decide together his med dosage.  I'm so thankful for her availability, interest and desire to get this figured out.  She has been analyzing his numbers and believes that we may be able to help him by making the changes in his meds.   I hope and pray she is right!

I'm thankful for such wonderful doctors!!!  God has blessed us greatly in this area by hand-picking people who have gone over and above in order to help our children.  Thank you God!

More later (probably tomorrow) as I need to go test and get snacks ready.  Thank you for your continued prayers.

Blessings

Leslie

Sat morning update

Thank you for your prayers for our family.  We woke up this morning to everyone feeling well.  :-)  We decided to head out to a local 4th of July celebration. 

Soon though, Joshua began to feel poorly (diarrhea).  We then decided that I would stay home with him and the rest could go to the celebration.  It ended up being a good decision because by 9:30 Joshua was throwing up.  He didn't eat much for breakfast, but none of it stayed down.  Poor little fellow.  I started reading him a book, but after getting sick, he was just wiped out.  He is sleeping now.

I emailed some with Joshua's endocrinologist yesterday.  She is so wonderful!!!  We have adjusted his meds in hopes that he won't keep having lows.  He had another last night before bedtime.  He was then high in the middle of the night (333) and fairly high this morning (over 200).  I wish I knew what was going on.

If any of you reading this are dealing with Type 1, did your child go through anything like this?  The stomach issues?  I know some of it is viral as I've had 3 other children throw up in the last week and half.  His is spaced out though.  Is he just not healing or catching it again?  I think that the diarrhea (I apologize if this is TMI) is not just a viral thing.  I'm not sure what it is though. 

I know if this continues that I will be taking him to see the ped.  Just debating whether I need to do it over the week-end.  Prayers for wisdom would be appreciated.  It's not "urgent", but I don't want it to get to that point either, kwim?

We have managed a few fun things in the midst of this yuck.  I redeemed coupons with 2 of my children yesterday and will post more and add pics later.  I had hoped to do something fun with Joshua this morning, but he is just too worn out from all of this. 

I hope you are having a wonderful 4th of July.  I'm thankful for the many freedoms that we have in this country.  I'm thankful for the men and women who have sacrificed much so that I could enjoy freedom.  I'm thankful for Jesus for giving me freedom from sins.  Freedom is a wonderful thing and gives us much to be thankful for each day. 

Blessings

Leslie

Friday morning update

Thank you friends for your hugs and prayers and words. Your encouragment means a lot to me.

Joshua was stable last night - 2am numbers were in the 200s (not uncommon for him at this point - and much better than too low).

This morning - 87. Low for a morning reading for him. Ate breakfast. Couple of hours later, he said he felt "funny". 67. Too low. Juice. Tried to get him to eat a heavy snack and he just isn't up to it. Had some grapes.

I have an email in to his dr and will call if I don't hear back soon. Not sure if this is sickness, too much insulin/not enough carbs, or going into the "honeymoon period".

Someone had asked if this could be controlled by diet.  Joshua is insulin dependant. For the rest of his life or until they find a cure. (I know this and still writing it makes me tear up.) He will still need to work on diet (as do those with type 2), but he will never be able to stop taking insulin. His antibodies have attacked his pancreas and it is not able to produce insulin. This is one of the huge differences between type 1 and 2 diabetes.

He will go into a "honeymoon period" where his pancreas will give one last go of working. It will seem that he is cured and all is fine. This *will* happen, but we don't know when. Nor do we know how long it will last. This also makes me   One of the doctors told me that parents often call it "the big tease". Yeah, that seems about right.

In the midst of it all, I'm thankful we are close to wonderful medical care. I'm thankful for those that have figured out how to help Joshua so that we can learn to help control his numbers so that he can live and do the things he wants to do in his life. I'm thankful for an amazing little boy who is taking this so very well. I'm thankful that God is holding us through all of this. I'm thankful for family and friends that encourage, support and pray for us.

This is hard, but I still have so much to be thankful for!

Also Daniel is still sick.  He seems to be feeling a little better than last night, but is quarantined at the moment with a good movie. 

Blessings

Leslie

Thur 11pm - If you are reading, please pray

Joshua is having fluctuating blood sugars - and they are low.  We tested at 9 and it was 68 which is low for him (under 80).  Gave juice and then a snack.  Sugars better 109.  Felt badly an hour or so later and tested again.  49.  That is really low.  Juice again.  Next test 108.  He still feels badly though and we don't know if it's a low or being sick.  Yes, he was sick again this morning. 

Please pray for him.  Lows can be dangerous and we just want to do the right thing for our sweet boy.  This combined with the extended sickness has been hard.

More info on low sugars for type1.  Don't read if it will worry you.  I know this is common, but it is our first time dealing with a sugar that doesn't seem to be responding as it should.

Will update later.  As you are praying, know that we still have a virus in our house.  Daniel is down with it now.  :-( 

Short update:  Joshua is asleep now and we'll be checking on him again at 2am.  Hopefully he is stable. 

He felt badly after the juice and snacks.  (Had 2 rounds of snacks and 2 juice boxes.)  Not sure if it was just the food/drink or the sickness he has been battling.  He asked me when this was going to be over - the diarhea and vomitting.  :(  It has been going on for almost a week now - though not non-stop. 

I'm off to sleep now.   Will update tomorrow.

Love
Leslie

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

. 

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!  :-)