Tuesday, June 23, 2009

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