Oh the Changes We Are Going to See!

Kyli has had diabetes for 8 months and it has been a LOOOOONNNNG and short 8 months.  When I look at how much has changed, I am in awe.  Our true and easier Honeymoon Phase was a good 6 months. When I say this, I mean that Kyli's body was doing most of the work during that time. She would need a shot of Humalog, maybe once every two days and we were not on a long lasting insulin and I slept through the night NEVER worrying about whether she was going to drop too low or not.  It was awesome and a great way to ease into her having diabetes. 

I left my job Feb 19th and I swear, Kyli's body was waiting for me to come home, because within 2 weeks of me being home, EVERYTHING started changing. We went from the one shot every other day to one shot of Humalog a day. Within the last month, I things have changed even more. I am pretty sure we are on our way out of our Honeymoon period. Kyli is getting anywhere from 4-8 shots a day. We do a minimum of 6 blood sugar checks a day and we exceed that most days with about 8-10 checks.  The other day, I was looking at her fingers and saw that they were dry and her fingertips were peeling, the sad part was that the dead skin coming off looked like Swiss cheese with all the holes in it from blood checks...Kyli is my hero though, I never hear complaints from her about blood sugar checks.  The other big change for me, I am now afraid of nighttime lows.  I am up until at least 11pm every night and do a check before I go to bed, I then wake up EVERY night at 2am and do another blood sugar check.  Based on that result will determine if I am up at 4am for another. Last night, I was up at 4am feeding Kyli milk and fruit snacks, waiting 15 minutes checking her again, and last night we had to do it again. The whole while she gave me her cheesy grin and told me she loved me. That is one amazing little girl!

After experience, I can say...Diabetes Stinks! But I am also going to say that there are some things that I get to experience that parents without a diabetic child may not get to or maybe just not as often.  I read this off another blog and it is true, I get to hold my child's hand every day not just while we are walking, but I get to really look at her hand, see how it has changed and give her kisses.  When Kyli has sugar lows or highs, I have no choice but to stop what I am doing take care of her needs and then SNUGGLE with her until she feels better, and I LOVE SNUGGLING with her, the rest of it sucks but not the TLC. I am more in tune with Kyli because I have to be, I know her personality and quirks better than other parents may know their child, because I have to. It can determine a life or death moment but it also means that we have a very close relationship and she already feels VERY comfortable talking with me and the love and trust that I see in her eyes when she looks at me, it makes me want to cry.  She understands that I have to give her little huts each day, but still somehow manages to trust and love me with all her heart. I don't know how she can be so full of love, but she is.  She amazes me each day with how much love her holds, just this morning she gave Mercy (our dog), her bowl full of oatmeal.  The bad part, we did not get to carb count before this but when we asked why she gave it to Mercy...she said, "Mercy looked sad. She did not want a toy, so I gave her my oatmeal." Was the dog happy afterward, of course! She was given extra food!

The one comfort I have going for me right now that probably keeps me from going crazy is technology.  We have started the process of getting a Continuous Glucose Monitor (CGM) and in the very near future we will start the process to get a pump.  These will let me sleep a little better at night and we will not have to do shots, only a site change once every three days.  So much better for her, and we can make sugar corrections much quicker to keep her from having high sugars. YAY!!

This is Kyli and Noah at the Mammoth Game. We went with the ADA, it was a blast. This was after a nap for Miss Kyli...

Hospitalized Again...

Mike and I took our first trip away from the kids the week of Noah's Spring Break.  We went to Las Vegas with my mom and my sister.  While we were gone, Kyli stopped eating pretty much all together...I didn't really think anything of it other than, she probably just missed us.  Well, we got home and two days later, she started vomiting, sugars dropped and ketones were high...I tried to manage it and an hour later she threw up all the water I gave her and then some, sugars dropped to 47 and ketones were 4.7. To Children's Hospital ER we went...And there we stayed for three days. 

Our hospitalization was for a "Hypoglycemic Diabetic." This is irony as its best. They were pumping sugar into Kyli and we were lucky to get her sugars to be close to 100. We spent a night in the PICU.  It was awful. Kyli had 2 IVs and then had 3 blood draws from her feet.  We are still scarred. Me, probably for life.  After the 2 IVs and 3 blood draws, I was holding Kyli to comfort her. I had tucked her into my arms and covered her with a blanket, she said while crying "Hide me Mommy."  Yeah, I cried.  So sad. I hope to never hear that come out of her mouth again.  Kyli was pumped full of sugar steadily for two days...she needed it.  Finally, I asked them to take her off of it so we could see how she did.  Well she dropped consistently for 6 hours and then her body finally started to take care of itself.  Thank Goodness!

The third day, they freed us and guess what...it was EASTER!!! Does anyone else find it odd that our first hospitalization we were released on Christmas and our second was Easter?  Only thing I have to say, is that I wish the hospital had blow dryers!


Once again I will say it though, I am so thankful to have Children's Hospital so close to us! For those that don't understand the dangers, Kyli's numbers were very low.  To the point that they were concerned she would lose consciousness and that her body may start to shut down...Scared, yes I was especially when she fell asleep on the way to the ER.

Here is hoping we will not go through this situation again!

Changes

Wednesday is the beginning of a HUGE change for my family. Mike and I have made the decision that I am needed at home.  We looked at our life and where I was needed versus what we think we need.  With Kyli's diagnosis and her ever changing sugars, we decided that Kyli needs me to be home so that I can be her primary caretaker, rather than the 3 she has now.  I am so excited! I was able to be a SAHM with Noah until he was about 3.  I loved almost every minute of it. I had to go to work when Kyli was 4 months, so we are going to have some catching up to do.


The last appointment Kyli had, her carb ratio changed and it now means that Kyli needs around 2-3 shots a day.  Being that she is three years old, it is not always the easiest feat. Plus, she seems to do best getting her shots from me.  The biggest concern I have right now is that Kyli is still in her honeymoon period,meaning her pancreas is still working, but slowly dying.  Also meaning, that we have to watch Kyli closely to ensure that her insulin doses are where she needs them to be and not to little.  The insulin we give her right now ensures that her pancreas does not have to work as hard allowing it to live longer and keeping Kyli "healthier" longer. 

I have recently acquired a pen pal who has a daughter close to Kyli's age that also has diabetes.  She has been awesome and also introduced me to a FB page that is called "Diapers and Diabetes." This group is amazing, very supportive and we are able to talk about the concerns that we have for younger children and the battles we experience with them.  They will also be very useful when it is time for us to get a pump. I know that FB has a bad rep for some, but this group is going to help me through and helps me get through some of that sad times. They also have given me some great ideas and resources that I didn't have before them. 

We survived a double ear infection that came with a head cold and serious fever.  No ketones, no high blood sugars, and overall a happy baby.  How? I have no clue, but I want to add that Noah had the same thing all week.  I think as a Diabetes Mommy, I figure that Kyli's illness will mean that colds, flus, and other bugs will hit her harder.  This week was an eye opener, it doesn't have to be that way. While, I still have to monitor her health more closely, Noah had the exact same thing with the same symptoms and ear infections for the exact same amount of time as Kyli.  It was a nice smack in the face reminding me that she will live as normally as we can let her. Not everything is because of her diabetes. Some bugs just last longer than others.

Let our new healthier adventure begin!!

Check Up

Kyli had a check up last week and I am proud to say that it went the best they have so far!  Kyli's A1C was 7.0, which is awesome :) She is honeymooning so her body is still helping, but the longer it stays like this the healthier Kyli will stay! This was the first appointment that really has felt positive for me.  They were really happy with all the daily blood sugar checks we do. As a matter of fact they told us we could stop with the snack sugar checks for now...while that sounds peachy, often after he nap, her sugars are low and we need to know how to bump her. So we may take the recommendation, but maybe not for my own comforts sake and Kyli does not mind finger pokes...We changed her carb ration for Breakfast and Dinner, if she eats 25 carbs she will now get a .25 unit dose of Humalog.  Compared to most diabetics, this is nothing, but nonetheless we still have to give her a shot.  The only thing that concerned them was that Kyli has not gained weight since our September diagnosis. She was sick right before Christmas so here is hoping we have a little poundage gain by April. They were also very happy with how her Honeymoon Phase is going.  She still requires very little insulin and that makes me happy.  She also manages quite a bit of the sugars on her own.  So yay for the parts that are working!!!

Our Christmas Adventure

Our Christmas celebration started off just the way I wanted it to.  On the day the world was supposed to end, ours started a new adventure, Mike graduated from CU with his bachelors in Business!!!

 

We had an awesome time. The kids behaved amazingly and all was well.  Well, except that Kyli's sugars had been running high for about a week and a half and I had convinced myself that her honeymoon was over...

 

 

Moving forward ONE day, Kyli wakes up the next morning, within 5 minutes of being awake, she vomits. Uh-oh...She then proceeds with these actions every one to two hours and cannot keep anything down.  Immediately, I find my sick management packet (thank you Barbara Davis Center!) I grab Kyli's notebook and start logging, temps, sugars, ketones and anything she drinks.  I watched her ketones go from healthy to dangerous levels in two hours.  This is when I curse her pancreas for not working, she could not manage her sugars while under duress...I have to call her Dr. They tell me to watch her for a little if nothing changes, head to the ER.  Of course, nothing changes so we head to the ER. And really when you have a sick 3 year old, most being like Kyli,  I could promise ponies and swimming pools full of chocolate and she wouldn't do what I want her to. A few things I learned about Er's, Kyli and diabetes.  1. Make sure they are not an overly busy hospital. 2. Make sure that they know a few things about diabetes. 3. When your endocrinologist tells you to have the ER Dr call them, express urgency and make sure they actually do.  4. AND THE MOST IMPORTANT- make sure they have a children's wing. 

 

Kyli's blood sugars were dropping so quickly and her ketones were skyrocketing, all I could think about was getting her to a hospital to get her help, so I choose the closest one. BIG MISTAKE!  For now on, I will drive her to Children's Hospital, it will take about 10-15 minutes longer, but I will feel safer and know they choose to be in direct contact with Kyli's Dr's. 

 

So, we sit at the closest ER for about 6 hours, the whole while, Mike and I are testing her blood sugars nd her ketones every hour, this particular ER checked her blood sugars with their machine ONCE and then it took them hours to get the results back.  We could not get Kyli's sugars above 100, for her that was BAD!  They finally called Kyli's doctor and determined she would need to be watched awhile longer. So they juiced her with sugar, got her up to 107 and let us go quickly.  Mike, Kyli and I headed to Children's, while this is not for most, because of Kyli being in her honeymoon phase, we have a little leeway and knew we could safely get there on our own.  Once we reached the ER at Children's (they knew we were coming) we got in almost immediately and her sugars had dropped to 74 in about 40 minutes.  Just so you know, an average blood sugar for Kyli should be between 80-200. We are observed a little longer and they realize she cannot be stabilized, we are finally admitted at 11:00pm. 

 

Let me just say this, with how quickly things happened, I knew Kyli was going to be admitted, as a matter of fact, I threw together a quick bag with some belongings so that I would have something.  Thank goodness, they only downfall, I did not think we would be in the hospital for a total of 4 days.

 

Kyli struggled with getting better, her sugars would not stay above 100, they had to raise the amount of sugar in her fluids three times. She did not want to eat, every time she went to nap, her numbers plummeted and the doctors felt the urge to wake her and try and get her to eat, which did not happen. They second day she decided she was not quite ready to start getting better so vomited all over the comfy clothes I had brought to make that very point...Mike had to make a clothing run so I had some thing for the evening.  The third day she finally started eating a bit but still her sugars would not increase. The evening of the 3rd night, also known as Christmas Eve, they decided to try a change, they started weaning her off the sugar in her fluids until they stopped the fluids completely, she had one drastic drop, but her body recovered and was able to stay around 100.

On Christmas Day, Santa dropped by and brought Kyli a Build a Bear.  Not long after, we were able to bust out and take Kyli home.  While I was waiting for Mike to bring the truck around, a young little girl and her family came into Children's with gifts for some children.  The young girl gave Kyli one of the gifts.  It was a full sized American Girls Doll.  Miss Kyli is the proud owner of a Josefina doll. As awesome as the gifts were, it was the best day because it was the first time I saw Noah in three days. We were blessed enough for Mike's family to watch him while I stayed with Kyli. Noah was even sweet enough to leave Santa a note asking him to leave all the presents at our house so he could open them with Kyli when she came home. He is such an amazing little soul.

 

 

While I would love to say after that everything was great, that is not entirely true. Kyli took the better part of another 2 weeks to get completely better. She struggled with her sugars getting above 100 and with eating.  That evil little bug she had did a number on her.

 

All in all, we learned quite a bit about Kyli, diabetes and what it means in coordination with illness. At least until Kyli is old enough to listen and do what we tell her, I hate to say it, but we will end up in the hospital each time some thing a little more serious than a cold gets her, but I am okay with it, as long as she is cared for by knowledgeable and loving nurses and doctors. 

 

Oh and those high sugars Kyli had had before her hospitalization, they were because of her looming illness...

Diabetes

Since Kyli was diagnosed on Sept 21, 2012, only about 3 1/2 months ago, I have struggled with the idea that this is going to be a permanent aspect of our lives. I do not consider it a burden, or a punishment, or anything like that. What I struggle with is that this is not something we can take a vacation from. Wherever we go, it goes.  EVEN when we are in vacation, we still have to be concerned about her sugars, more so due to the change of activity and excitement. If we get sick, we have to check it more often. If she is more active than normal, we need to make sure we are checking her sugars. If she sleeps late, if she eats more than normal, if she has a lazy day, if she goes for a walk, if she goes to gymnastics, whatever she does we have to ensure her sugars are within a safe range.

The other day, while I was laying down with Kyli after our hospital visit of 4 days (that will be another day), Kyli being her very loving and sweet self, grabbed me around the neck, hugged me ferociously and then said, "Mommy, I love you" and then of course sealed with a big wet sloppy kiss.  In that moment, I realized that EVERYTHING is going to be more that just okay. Mike and I are taking great care of her and she is loved, very loved. She is happy and she truly only HAS diabetes. She is NOT diabetic. It is a characteristic only, she is so much more.  What makes my heart so happy is that now, almost always, I view her has Kyli and that is it.  Only when we have to test sugars, or she is acting odd does the reminder that she has diabetes come out. The fact that I have to view her with diabetes still makes me sad, but at the same time it empowers me.  I want to spread knowledge about Kyli and her disease. People seem to understand so little about type 1 diabetes versus type 2. As a matter of fact, yesterday I went to Barnes and Noble and looked at the books they have for diabetes. EVERY SINGLE ONE was about type 2. While I understand that more people are diagnosed with type 2, type 1 needs more books out there and more knowledge. We need books out there that show parents like me that we are not alone and that we are not the only one who has a child diagnosed at a very young.  The only reason I am more comfortable with Kyli's diagnosis at 2 was because we did a Diabetic Retreat a few months ago and I was FINALLY able to speak with a few parents that had an early diagnosis too. It is nice to have doctors that know how to help Kyli's diabetes but it is completely different when it is your own child.

What I guess I am trying to say is that I know that God will never give us more than we can handle, but I have found a peace with what he has given us and a strength in knowing that we can prosper with this diagnosis.

Wordless Wednesday