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. 

Tuesday morning at the hospital

Hi All,

Thank you for your prayers, notes and calls.  I apologize that I haven't been able to pick up on all the calls.  Yesterday was a long, long day. 

I reread my post yesterday and it seemed so ... emotionless.  I think it was a little bit of shock and just feeling the urgency of heading to the ER.   I'll try to share a little bit today while I have a few minutes, but know that this may be disjointed.

Yesterday we arrived at UNC a little before 5pm.  We checked into the pediatric ER.  Isn't that nice to have a peds ER?  We were there for over 5 hours.  Roger met us and the three of us were together during this time.  We talked, laughed, and played cards between visits from 5 doctors and a very nice nurse.  All of them were nice really.  The nurse went out of her way though to be kind to Joshua getting him some of her own sugar free drink mix to have when he was so hungry.

We began the learning process of what diabetes is - and what is happening in Joshua's body.  Basically, his pancreas is not functioning.  The antibodies that protect us from germs and diseases have gotten confused and attacked his pancreas.  The pancreas is what makes insulin for our body.  When we eat, our pancreas gives us just the right amount of insulin to be able to handle what we have ingested whether it is a piece of fruit, a sugary drink or protein.  The doctor shared that the pancreas is a truly amazing organ and that medical science has done it's best to replecate its function though it's not nearly as good.  That isn't surprising that God has made each part of our body to function in an amazing way.

After blood draws for many tests, they confirmed that his blood sugars were still very high - "critical" was the word that they used.  The good news is that he is not septic or in high distress because it was caught early.  This means he was sent to a regular room instead of ICU and hopefully will have a shorter stay.

Through all of the wait, Joshua was so good and so brave.  He was also very hungry!!!  The dr explained that because he wasn't producing insulin, the body was not able to deal with the sugars in the foods he eats.  They were just discarded instead of being sent through the body - leaving him ravenous!  So, by 10pm he was starved!  They didn't want him eating until the blood results were back - and then I'm not sure why it took so long to get food.  He loved the food they finally brought.  Said it was the best meal ever.

We were taken up to our room about 10:30?  More check-in, questions, tour of the floor, learning more about his "pricks" and his first dose of insulin.  One of the nurses told me (though I heard this a LOT), that they would be "overwhelming us with information" over the next few days.  I laughed and thought to myself that it was a good thing that my mind was empty and bored.  Um, right! 

Our room is HUGE.  It is nice and friendly for a hospital room.  The staff have all been very nice. 

Joshua got another meal tray when we got to the room and Roger brought me some food from the cafeteria.  Isn't he nice?  He stayed for awhile until we were settled in for the evening and then went home. 

After everyone had left and all was calm, I sat in the bed beside Joshua to read him a book.  At that point,  he just started to cry.  He wondered "why me?".  Haven't we all asked this question of God?  I know that I have.  He was worried that he was going to get in a coma (someone mentioned this as a possible thing that happens).  I assured him that this was caught in time and was not going to happen.  He also tearfully asked if he was going to have to "prick" himself multiple times for the rest of his life.  I answered honestly.  Yes, at this point, that is what life is going to be like.

I just held him and comforted him and we prayed together.  I know that the prayers of others are helping all of us so much.  Thank you!  And please keep praying. 

Joshua continues to be brave.  He would love visitors if you are local - and not sick.  ;-)  I think he is feeling a bit - not a lot - overwhelmed.  He is also feeling like a pincushion.  He is up to 8 so far.  Yes, he is counting.

You are welcome to phone us - and hopefully we'll catch you in between doctors.  You know how it can be in a hospital.  We will be here a few more days as we learn how to administer shots and manage his blood sugars. 

Through all of this I have felt a peace that can only have come from God.  I think He has been preparing me for this.  I also think that having walked the road with Eliana that this one is less intimidating to me now than it would have been a couple of years ago.  I'm thankful to know that God is with us every step of the way.  I'm thankful we are in a place to receive such good medical care.  I'm thankful for family and friends who are praying with us and supporting us.  In the midst of all of this, I remain thankful.  God is good.

Need to go hang out with my sweet boy who is asking a million questions!  We've started a great book and he is ready for the next chapter.  I'll update more as I can.

Love

Leslie

Diagnosis - Diabetes

Joshua and I have just returned from the doctor's office.  They did a non-fasting blood and urine test on him.  His numbers were so high that they were not measurable.  The test measures to 500 and his is higher than that.  Normal is 80-110. 

Since his numbers are so high, they are wanting to get him back into normal range.  We will be leaving shortly to admit him to UNC hospital.  While we are there, we will be learning more about his diabetes and how to manage it. 

I greatly apologize for sharing the news this way.  I know some of you will read this before I have a chance to call.  I'm sorry. 

Please pray for us as we walk this new path.  I'm not surprised.  I felt like this was coming, and that mommy intuition is so often right.  I know this is not a surprise to God and that He is holding us in his hands.  His is good, true and faithful. 

I'll update more as I'm able to from the hospital.

Blessings

Leslie

Small prayer request

I'm taking Joshua in today to see the doctor for some testing.  He has had some things going on for a few months - and it's really gotten worse recently.  It was especially obvious this week.  Some of the symptoms point to diabetes.  I've asked for the doctor to run a urinalysis to test for this.  (This is all via the appt nurse so hopefully it will happen.)

I've called this morning to see if we need to do anything special (fasting?  eating/not eating certain foods?) before coming in and am waiting to hear back.  Also wanting to confirm that the testing can start today. 

Would you pray that we would get clear answers as to what is going on?  I'm concerned, but also at peace.  I know that Roger is also very concerned.  At this point, Joshua seems calm about all of it.  I just want to find out if there is something we need to do to help Joshua.  We are obviously hoping it is not diabetes. 

I'll update tomorrow when we know more.  Well, I hope we know more, but I'll update either way.

Thank you,

Leslie

Happy Birthday Daniel!

Our little boy is 5 today!  Where have the years gone?!  Sometimes when I hear myself say things like that, I think I sound so old.  The years just seem to fly by at times and I'm doing my best to try to enjoy the days and not live with regrets. 

Our precious Daniel.  A blessing from God (as are all children!).  A strong role model in the book of the Bible bearing the same name.  I pray that as he grows that Daniel will be able to stand strong in a culture that has turned from God.  I pray that He will hold fast to God.  I pray that he would love God wholeheartedly.

Five years ago we welcomed a healthy, blond-haired, blue-eyed baby into our family.  We were thrilled to meet him!  It had been a long and hard pregnancy - periods of it that I don't even remember.  (I have Hyperemesis Gravidarum which makes for very sick and very rough pregnancies.)  Lots of meds, IVs, hospital visits ... it was all worth it though - every moment - to welcome Daniel into our family.  Thank you God for blessing us!

Daniel is such a delight to me.  I love his smile and the way his eyes light up.  I love his impish grin.  I love his giggle and the silliness that is still a part of his personality.  I love hearing his stories and seeing where his imagination takes him.  I love seeing what interests him.  I love seeing him play with his siblings.  I love his hugs and holding his hand. 

We spent the last week at the beach and I loved being with him and watching him collect shells.  He learned about various shells - olives, augers, baby ears, "fairy boats, and more.  He has a good eye and is persistant and careful in looking for shells.  He also enjoyed watching the crabs along the surf and digging in the sand.  He likes to walk along the shore (so do I) and hold hands.  Mostly though, he loves looking for shells. 

Daniel is creative and likes to paint and will spend time getting his pictures just right.  He had good attention to detail and is proud of his work.  Daniel enjoys listening to stories, riding his jeep, playing inside and out and collecting things.

Daniel has grown in so many ways over the last year.  He deals with sensory issues and has made a lot of progress in both the types of foods he is willing and able to eat as well as in dealing with things around him (noise, people, dirt, distractions).  I'm happy to see he making such progress and excited that he is able to enjoy his world more these days.  I have to admit that some of his "quirks" are ones that I have too (not liking to have my hands dirty is one of them).  They aren't all bad.  LOL

I'll post more pics later in the week.  We had a party for Daniel while we were at the beach with my family.  We also spent today just playing and doing the things that Daniel wanted to do - games, playing playmobil, riding his jeep, going to McDonalds, watching a movie and just hanging out with his family.  It was a low-key and fun day.

Daniel - I love you very, very much!!!  Thank you God for blessing our family with Daniel!

Love,

Mommy

Our last "Sports Saturday"

This is a week late because we have just spent the last week at the beach.  I was trying to catch up a little while we were gone - and will post beach pics later when they are uploaded. 

We had our last "Sports Saturday", well, for a few months anyway.  Our boys had their final games with their flag football teams.

Joshua had the first game at noon.  Roger was working, so just the children and I went.  We set up our "tent"/awning which provided much needed shade.  We had a nice lunch that we bought at the concession stand.  It is a great deail - we get a combo lunch cheeseburger/hamburger/hotdog with chips and a drink for $2 - $2.50.  Everyone was happy.

 Both boys played well and had tough games.  Unfortunately, their teams did not win.

That is part of playing sports - learning how to be gracious in winning and losing.  I'm thankful for the life lessons that their coaches work to instill around sports.  I'm thankful that they make a point to talk about God in the context of their lives right now and in how they are conducting themselves on and off of the field.  I'm glad my boys have the opportunity to play for these teams and look forward to more football in the summer/fall.

Blessings,

Leslie