We had our follow up appointment at CHKD this afternoon. This was the first time we had ever been to the sattelite office so it was really nice! Makes it much easier to go there instead of that long drive to Norfolk!!
OK...sooo ...I asked what Kaceys A1c was when we got to the hospital and it was 10.5% (not good!) The nurse we spoke to was VERY nice and she explained things soooo much easier and in terms that Kacey could understand :) We signed up for the carnival on the 11th so that should be tons of fun and we heard some exciting news as well...they are giving away tickets to the Jonas Brothers concert...woohoo! The girls were thrilled! They decided to change Kaceys dose of Lantis from 24 units at night to 20 units. Seems she's hit her "Honeymoon" stage and so shes not needing as much insulin. No idea on how long this will last....somewhere between 2wks to possibly 2 years....yikes! I asked about the pump and she said that once Kacey got thru this honeymoon stage and her levels stabilize then we can think about the pump. Not sure about Kaceys feelings on it yet. She made mention to not wanting it because she wanted to just take her shot and get on with it and not worry about pumping. So I guess we'll see when the time comes.
A bit of good news....Kacey took her shots in her tummy today and she said it was MUCH easier! We talked to the nurse about it and she really made a big deal of it to Kacey and it made her feel really good! She told Kacey to try doing the Lantis in her tummy too because it wont hurt as much since shes got that little fat roll there. She could also take it in her hip fat. Then she encouraged her to try her finger sticks herself. So this evening she took her Lantis in her tummy and didnt even cry! Then she did her own finger stick!!! I was sooooo proud of her and how far shes come in just 2 weeks!
On a sad note....Kacey made me cry. After all her shots and finger sticks...she was getting ready for bed and had this sad look on her face. I asked her what was wrong and she teared up and said "Mommy why do I have to have diabetes?" Well I choked up and couldnt hold back tears and the only logical answer I could give her was "Because God thinks youre special! I bet he thought you were such a big girl and he knew you could help other kids your age and all the grown ups in our family learn more about diabetes." Geesh....what else could I say to her? I ask myself the same question every day.... God, why us? Why Kacey? and one day Im sure I will know the answer but right now its just not time for me to!
OK...til tomorrow :)
Tuesday, July 29, 2008
I had a rushed day and now Im ready for bed so I will make this a short update....Finally got my computer back and Im not on the laptop anymore. It had a virus and crashed but thankfully everything was saved and I just have to save it all to DVD. Went to Walmart and got groceries and then rushed back home for lunch. Kay had hockey conditioning so we had to go back out and while I was out I got a call back from the Diabetes Center. Seems the ball was dropped and they "forgot" about us so....we have an appt tomorrow with the Dietitian...YAY!! Guess I have to be pro-active and stay on top of things to make sure Kaceys getting the care she deserves! We're going to be getting the "Back to School Plan" so we can make sure Kacey is getting the care she needs at school.OK thats about it for now...Im tired and Im calling it a night!
at 9:20 PM
Sunday, July 27, 2008
Today we decided that we'd just take a day and visit. We left around 8am and went to Grannys and stayed there through lunch and then went to visit my Mom for dinner. It felt good to relax and just do "nothing". Kacey did really well being out all day but by 6pm she was wiped out again. We packed the cooler & backpack with things for her to eat and so there was so "guessing" for meals. Tomorrow I am putting in a call to the Diabetes Center to find out why we havent been called about the follow up appt since she left the hospital.On a positive note....we now have a team for the Walk for a Cure... "DIABETES SWEETIES" ....Im thrilled that this is all coming together now! I got the team registered and Ive created a myspace page as well as the letter to send out to friends and family. I will post more about it soon!
Saturday, July 26, 2008
Well Im not sure if Kacey's meds need to be adjusted or not...but shes had 2 lows today ... both 69 (breakfast & lunch). Today was the first day I left her since being diagnosed and it was like leaving my "newborn". I had to take the car to have the oil changed and I was going to let Frankie take care of it all but Kacey threw a fit because she wanted me to be the one to give her the shot. So I got her up early and gave her breakfast and then gave her the shot and left. I was only gone about 2 hours but it felt like Id been gone all day! Frankie rechecked her sugar while I was gone and she went from 69 to 282 ... yikes! Thats what 1/2 cup of regular soda will do to her!! I cant imagine what a whole bottle would do...scary! So at lunchtime she was 69 again and she ate and came up to 101. We had our first dealing with eating out and trying to figure out carbs. We were at Caitlins wedding and she just bottomed out and was exhausted and we had to leave early :( I guess I have to get used to leaving things early because she doesnt feel well. The rest of the day was uneventful. She ended up just laying around and watching TV.
Thursday, July 24, 2008
I had my first "panic" since Kacey was diagnosed last week. It was close to dinner time and I tested her sugar and it was 64!! I thought maybe the test was wrong so I retested her and it was still a 64...OMG! She wasnt showing any signs of being low except being tired and a little bit of a headache. I immediately gave her 3 glucose tablets and called her doctor. He called me back within a few minutes and told me it was ok and to wait 15min and test again and if she wasnt above 80 then give her 3 more. He then told me to "Read my discharge instructions". I felt like he was a bit short with me but this was her first low and I was too frazzled to read those! I retested her and she had jumped to 154...so that was good! Im still feeling the stress of trying to be "Supermom" and make sure everything is perfect. Ive been doing tons of research and been in contact with JDRF (Juvenile Diabetes Research Foundation). They are such a wonderful group! We were sopposed to get a "Bag of Hope" while we were in the hospital and we never got one so Lori Camden sent her one along with other "goodies". We're very excited about the Walk for a Cure. (Watch for more info on that soon!)
Monday, July 21, 2008
I had my first "Mommy Meltdown" this evening. Its not even been a week yet and Im trying to be "Supermom" and its just not working! Ive been trying to do everything (finger sticks, shots, meal plan) and its taking its toll. I keep questioning myself and reminding myself its only been a week but I feel like the Mommy of a newborn again. Having to pack the bag and make sure I have everything I need. I love my hubby dearly but I just wish that some of this stress could be taken off me. He saw how upset I was and didnt realize how much he was needed. Ive just always been the one to take care of the girls and their every need and this is just something I need help with. I was finally able to get a nice hot bubble bath and relax and I felt much better once I got out.
at 10:58 PM
Sunday, July 20, 2008
On July 15, 2008...the life as we knew it changed forever!Over the past few weeks, Kacey hasnt been feeling quite well. She seemed more tired than normal but there wasnt anything to raise a red flag over. Then last week, she had two bedwetting accidents. Thats sooooo not like her but we brushed it off as "Shes played hard lately and she was probably sleeping so sound." Then last Friday we went out to breakfast with my Mom and about an hour later she started to complain with stomach cramps...it wasnt long after that she threw up her entire meal! So I figured with the bedwetting and then the vomiting surely she was getting sick and must have a virus. Sat morning she got sick again but then felt well enough to play softball. Sat evening we were sopposed to go to a family party but she felt too sick to go and wanted to just sleep...so she did. Then Sunday and Monday she felt fine. Tuesday morning I walked in the laundry room and stepped on wet clothes! She had wet the bed again! So I told Frankie that I thought maybe she had a bladder infection/UTI and I thought we better take her in. So I got her an appt for Tuesday afternoon. We had to see the nurse practitioner because my doc was booked. I took her in and she was feeling fine...other than a slight headache. They tested her urine and I was almost certain we'd be leaving there with an antibiotic! Well, the nurse came back in and said she wanted to do a finger stick and check her sugar. She was gone about 5min and she walked back in with my doctor!!! I knew something wasnt right! He sat down and he said "Her blood sugar level is 384." I felt my knees go weak and started to choke up because I knew what that meant!! So he goes on to explain Diabetes to me and I felt like I could see his mouth moving but couldnt hear a word! Until he said... "Theres nothing I can do for her here and I want her to go on to CHKD Emergency Room" I honestly thought I was gonna hit the floor! I started to cry and he told me to go home...pack an overnight bag...and head on over there. So I now had to call Frankie and not only tell him we had to go to CHKD but tell him that it was almost certain she had Type 1 Diabetes. When he answered the phone, I broke down into tears and tried hard to tell him what I'd just been told Thank God he was at the shop because he drives that tractor trailer all over and I wouldnt of been able to wait on him. He rushed right home...meanwhile I packed the overnight bag (with the intentions of staying overnight) So we got down to CHKD around 6pm....go straight to the ER...where we met the most wonderful nurse we could have possibly met....AMANDA. Kacey was so scared and we were still in such a fuzz about everything but Amanda made us feel so calm and Kacey bonded with her immediately. After getting stuck twice by another nurse for an IV and taking 6 tubes of blood and a urine sample...it was time to tell Amanda bye. Since we were already prepared to be told that they were admitting her, it wasnt such a shock when they told us they were taking her up to her room....the shock came when we stepped off the elevator and were greeted with a sign that read Pediatric Intensive Care Unit! OMG...what?!?! What was happening? Why us? Why Kacey? Was the blood sugar machine wrong? I had so many things switling around in my head and I was trying so hard to be strong! So...we get in our room...the clock reads 9:50pm...Kacey last ate at 11:30am and shes screaming shes hungry and also going through the upset of leaving Nurse Amanda in the ER. Thankfully we were greeted with very kind and caring nurses. Once they got her settled they came in to take her blood sugar and then made her pizza and gave her the first dose of insulin. I sat down in the chair and it all hit me at once. I couldnt stop sobbing. I knew we had a long night ahead and we were all exhausted! I ended up getting an hour sleep out of 24hours of being awake. The next morning...we met the Endocrinologist and he confirmed that it was definately Type 1 Diabetes but that we wouldnt be leaving the hospital until we learned everything we needed to know to care for Kacey. I was so shaken at this point and lacked sleep to the point I thought for sure Id be seeing pink flying elephants soon! So by 10am we were already in our first class..."What is Diabetes?" We learned all about diabetes...how to use the blood sugar machine...how to calculate her insulin....how to draw the insulin....and lastly how to give the injection! We were told that before we left the hospital we both had to show that we could do all of that!!! Around 5pm we were told that we were done for the night. During this whole time, Kayleigh was with us and it was taking its toll on her so Frankie drove her all the way back home to stay with my Mom and then came back down to the hospital. During that time, I got the chance to take Kacey to one of the playrooms they have for the patients. This is where she met several other patients (most dealing with cancer since the playroom is on the Oncology floor). She also got to meet "Tank", a therapy dog, that was making his rounds visiting everyone on each floor. By 8pm we came back down to our room and relaxed for the evening. When Frankie got back he walked in with a box full of goodies sent by who else...but NaeNae (my mom). In it we found, magazines, word finds, crafts, stickers and snacks for Mom & Dad. So she immediately dug into the crafts....foam sun visors for all the nurses....and then one "special" sunvisor and handwritten note. When her nurse came in, Kacey asked her if there was mail at the hospital because she wanted to send the visor and note to Nurse Amanda. Well the nurse was so touched she told Kacey she would hand deliver it to the ER and if she wasnt there she would put it in her "mailbox". About 30min later....Kacey got a visitor ....NURSE AMANDA!!! Kacey immediately started to cry! Im not sure what made her bond with Amanda but whatever it was....I liked the calm feeling it gave her! She'd come upstairs to personally thank Kacey for her sun visor...which amazingly matched her scrubs! She stayed for about 10min and then reminded Kacey that she'd be leaving for 5 days so she wouldnt get to see her before she left to spend time with her sister and Mom that were visiting from Texas but she wanted to reassure her that she was going to be fine and our next trip down there for her check up to be sure and pop in to say hello! But she also wanted to let us know that tonight a little girl came in the ER with the same symptoms Kacey had...same diagnosis....was also a sofball player...and was being admitted as she spoke to us! She wanted Kacey to meet her before we left so we told her we'd make sure she did! So after a few tears, she left. I sat there smiling because that just goes to show you that some nurses REALLY care more about their patients! The rest of the evening was pretty calm. Her blood sugar was still running in the 300's and I was worried because it wasnt coming down. The nurses reassured me that it would be ok...the doc just had to find what works for Kacey and then it would come down. We got the blood sugar machine today in the class and we were told that we could start using that finger stick instead of the ones they had in the hospital since it was MUCH smaller and wouldnt hurt quite as bad. So at 3am, I got to be the first to test it. The nurse came in and wanted a finger stick and Kacey was sound asleep. I got everything ready and tried to wake her but she was so tired she didnt budge. I stuck her without her even waking up!!!! Thank God for good technology...LOL! Her sugar was still in the 300 range Yesterday morning she woke up and she tested her sugar....171!!!!!!!!!! OMG it was down!!! So at 9am we went back into class. On our way down we got to meet Madison...the little girl Nurse Amanda told us about!!! They both immediately started chatting and became friends! So...this time a Nutrition class...where we learned how to read labels...what she can and cant eat....what will raise her sugar and drop her sugar....and how once we leave and go home at some point in Kaceys life we will have someone question WHY she's eating suagr things or things with carbs and wonder WHY she can have them since shes a diabetic? Well....simple answer....she can eat anything she wants except soda and fruit juice....as long as we make up the difference in what she eats with the insulin. So this means....she can basically carry on as she was....but this time we're counting carbs...and making better food choices. (Which BTW, jumping ahead to today...shes reading the labels on things and sees they have tons of carbs and that means shes got to take more insulin and shes making the right choice to eat lower carbs) After class we went back upstairs for lunch and on our way we talked with Madisons parents while Madison & Kacey went ahead of us like they knew the hospital and had been friends forever! We got to our rooms and they had lunch and shortly after Madison came to ask Kacey if she wanted to go play? So we grabbed our things and up to the playroom we went! The girls quickly found they had MANY things in common so they had alot to talk about....not to mention we also found out that we only live about 20 miles apart!!! They live in Yorktown. I immediately made friends with Madisons mom who was falling apart at the seams as we spoke....and I FELT her pain because she was at the point where I was 24hrs earlier...I was able to reassure her that it gets better and it seems overwhelming now...but it will all sink in and she'll feel more comfortable tomorrow. Wowwwwww.....here I am.....just 24hrs ago I was the one falling apart and now Im helping someone else through this....not to mention...our girls were like old friends and were already planning a "playdate" once they got out! We got back downstairs about 4pm and we were told there was a strong possibility that we could leave if Kaceys blood sugar was still down....fingers crossed....and at 5pm we tested and it was 172!!!!!!!! YAYYYYYYYYYYYYYYY!!!! That meant after dinner and her shot she could leave...sadly we'd be leaving the Capps family behind. The girls were a little bummed and after we signed our discharge papers we went over to say Goodbye (but not for good). She'd made a friend....with the same type of diabetes...same sports interests....and only 20 miles away....we couldnt lose contact! So we exchanged contact info and said our tearful goodbyes. As we drove home we reflected on our experience at CHKD and every bit was nothing but wonderful! The nurses...the food....the doctors...the volunteers....and we're so grateful to have been sent there!So what does this mean now....well this means that we're certainly going to be much more health conscious...we're going to be reading the labels BEFORE it ever makes it into our house...and we'll continue our crazy busy life like we used to!!! This doesnt mean we stop everything...this means we start living the healthy way! Kacey will have to take insulin for the rest of her life...and even though it might be an adjustment now...before long it will be a normal part of her life. She's doing much better with her shots...and her blood sugar even got to 152 this morning which is 2 points from her target....GREAT!! She attempted to do the finger stick herself today but shes still a bit overwhelmed and I helped her but it wont be long and she'll be well on her way to doing it herself and before long she will be giving herself the shots. Thanks so much to all of you that called or texted me, Frankie & Kayleigh to check on her while we were in the hospital! If this is the first you're finding out then we're sorry...it was a little difficult to call everyone with everything that was happening! We hope all of you are well and we hope to hear from you all soon!