Monday, July 27, 2009

Juvenile Diabetes Research Foundation

We have gotten a lot of support in this new journey. I'm thankful for that and know that it helps to know that others have walked this path and are here to answer questions, listen, sympathize and understand.

One of the supports we have is from the Juvenile Diabetes Research Foundation We received information about them while we were in the hospital. I had not yet initiated contact though when I received a call from our new case manager at our insurance company. I'll admit, when I first heard it was someone from insurance, I was fearful of hearing that we were being denied services or coverage. The gal I spoke with was nice - and knowledgable about diabetes! It was very refreshing. She talked with me about the things I needed to do - and then followed up with an email listing websites for various services. Really nice!

She followed up our phone call the next week to ask if I'd talked with anyone from JDRF. I hadn't. Well, she called them and spoke with someone who then called me! This gal from BCBS (insurance) is on the ball! I spoke with another mom that helped to answer questions and talked with me about the mentor program. They will match us up with another family with a boy similar in age to Joshua. That will be nice. I know he will enjoy meeting another boy that also has diabetes.

I sent in a form to JDRF that we received in the hospital. As a result of that, Joshua received a really nice surprise in the mail! It is the JDRF Bag of Hope.



A backpack filled with things. The backpack even has a cooler compartment in the back that he could use to carry his meds (or a cheese stick which is what he likes putting in the cooler when we go out). The backpack has the JDRF logo on it.

Here are some of the goodies inside.

*Rufus the bear - who is wearing a medic alert bracelet. He has patches in the spots where you get pokes and shots.

*Story book about Rufus. The story is about a boy diagnosed with diabetes and his mom makes this bear "with diabetes" so that he has a friend that understands.

*Pink Panther First Book for Understanding Diabetes

*Cartoon book called CJ has diabetes. One of the facts from this book is "every hour someone finds out they have diabetes".

*DVD called "You Can't Catch Diabetes from a Friend"

*Coupon for a local science museum

*Carb counting book

*Glucometer

*OmniPod Demo Kit - a pump so Joshua can see what it is like.

*LOTS of pamphlets and brochures on carb counting, wearing a pump, advocacy, research, hypoglycemia chart, JDRF magazine, diet and portion control and more!

This is incredibly nice. I know it helps to have the information and even in reading the books to know that the emotions are all things others have felt too. I have to say, that I cry reading these books still. There are times when I just can't believe he has diabetes. There are still times when it is hard for him. I hang out with him most nights until he goes to sleep as night is typically the hardest time of day.

Joshua thought the backpack was really cool and that it was really nice of them to send it!

Blessings

Leslie

Monday, July 20, 2009

Hospital Stay

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.



http://i176.photobucket.com/albums/w187/rogernelsen/June09/DSC08499.jpg

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 said that 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

Thursday, July 16, 2009

Introduction

This blog is about the journey with Type 1 diabetes. Joshua, age 9, was diaganosed with Type 1 (Juvenile) on June 22, 2009. This is Leslie, Joshua's mom, writing and hoping that Joshua will also join in writing on this blog. He liked the idea of a blog so we'll see how it goes.

Here is a little background of the beginning of our journey. Joshua had exhibited symptoms for weeks, more than a month, but it had gotten really bad the week before diagnosis.

The most obvious symptom was frequent urination. Unable to "hold it" at all. Even for a short time. It reminded me of a toddler. He was also drinking a lot and eating a lot, though I didn't really see this as all that unusual as he is an active boy. In hindsight, I also saw that he was more difficult emotionally (irritable, challenging). I didn't really know why he was acting this was as it wasn't in character, but since diagnosis, this has all disappeared.

We went on a week long family vaction beginning on the 14th of June. On the 4 hour trip to the beach, we stopped at least every hour for a bathroom break. I called the following morning to schedule a visit to the ped to test for diabetes. I had asked friends on a message board if there were other things I should be looking for - other symptoms. I heard a number of people say that their children had been through something similar and it ended up being a short-lived phase (the frequent urination). I hoped that would be true for us too.

Over the course of the week though, it seemed to get worse. We could also see how very, very thin Joshua had become. He has never been big - well, except when he was a very chunky baby - but this was more than normal. He hadn't been able to gain any weight recently even with eating as much as he did.

We went to the ped the Monday after we returned from the beach. Our appt was at 3pm. I called again to confirm that they could do a test for diabetes. The nurse said that typically they like to test after fasting - not a great option when your appt is at 3pm! She said they would do what they could and he could come back on a day later in the week for a fasting test. So, I went into the appt not really thinking we'd get answers on that day.

Joshua did a urine and blood sample for testing. The ped came in shortly after that and said words I didn't want to hear. "You were right. Joshua does have diabetes." What mom wants to be right about something like that? I think God had prepared my heart for this news, but it still hurt. I felt like I needed to hold it all in too. I didn't want to upset Joshua by just crying at the impact of those words.

The ped then told us we'd need to go to the hospital. Joshua's blood sugars were off the record for what his machine would read (over 500). We were given the choice of two local children's hospitals. Both very good! One with which we have experience - though in cardiac and general surgery - not endocrinology. The ped preferred the other hospital for this diagnosis, so off we headed.

We went home to pack a small bag for what we thought was going to be an overnight stay. I phoned my husband who planned to meet us there. That was the beginning.

We'll share more on that in the next post. If you are reading, please pray for us as we learn to manage this. Please pray for a cure!

Blessings
Leslie