Monday, April 28, 2014

Worry...Worry...WORRY!

The Bible tells us that we are sopposed to give our worries to God and rely on Him in times of need. It tells us to trust in Him with ALL our heart....not half our heart....ALL of it. So why in the world am I worrying myself? Why does my brain constantly feel like mush? I haven't written in a while and I'm sure bottling up my feelings isn't a good thing. I used to be so open on here. My feelings flowed like the river but now I'm scared to share my feelings. WHY?!? Is it because I feel I'm going to be judged? Is it because I don't like people saying "Something is always wrong with your child."...."You're always sharing your child's illnesses because you like attention."...Ummmm....NO! I don't like the fact that I have a child with a serious life threatening illness and if I could take it from her then I would. But diabetes isn't the one dealing us a crappy hand lately. Kacey has something going on and it's been going on for the last few months and I've been so scared to share it....until now. If I don't get this all off my chest and blog about it then I'm going to be the ticking time bomb that ultimatly decides to blow and it's not going to be pretty.

To my close friends in real life that know what is going on....THANK YOU for being a rock for me. Just listening to me and giving me hugs and wiping my tears has been more help that you will ever know. I also want to thank those select D-Moms that have come to my side during my time of need and just left me encouragement to pick myself up and move forward. I love you all!

Sooooo.....here goes.....
October 2013...Kacey came running in to me and said she was in her room but she felt something "weird". Her heart skipped a beat and made her cough. It took her breath and scared her. I brushed it off as....she'd had caffiene and had been playing in her room. Yeah....caffiene....you know when your heart races a little from those drinks of caffiene you normally don't have.

November 2013....It happened again! We were walking in Walmart, she coughed and had a scared look on her face. We'd just had breakfast at IHOP and she'd had two glasses of diet coke with her meal. Hmmm....ok so we're going to have to really limit your caffiene. I passed it off once again!

December 30, 2013.....Christmas Town....Busch Gardens
We were walking around enjoying the Christmas lights when all of a sudden Kacey stopped, grabbed her chest and bent over. WHAT THE HECK IS WRONG WITH YOU?!?! I pulled her by the arm and sat down on a nearby bench. She continued to cry and rock with her hands against her chest. She had a heart flutter but this time there was pain. Pain to take her breath and make her cry. My child with the very HIGH pain tolerance couldn't stand this pain. We sat there for about 10 minutes and the pain hadn't let up. So I told her maybe she should walk it off....yeah....let's get up and walk for a bit. We headed toward the front of the park and it still hadn't let up. Sooooo... (dummy me! Looking back now I wish I had taken her to first aid!)...we left the park and headed to the van. I was hoping it would let up but she said the pain was deep....real deep...like so deep that she couldn't rub it from the outside. We got to the van and I realized....I don't know my freakin way around Williamsburg! So I got on the interstate and headed to Mary Immaculate Hospital about 20 minutes away. Scared....I don't think that even begins to describe my feeling! We got to the ER and walked in to two VERY LAZY front desk workers who obviously hated their jobs. I explained she was having chest pains and instead of getting her in the back and hooking her up to the EKG right away....we spent another 20 minutes filling out paperwork and getting vitals. They finally got her hooked up within about 30 minutes of arrival and by then the pain was a dull ache and she wasn't having anything else going on. We spent 4 hours watching the monitor and she was released with paperwork to call our PCP. The next morning was a Monday. I called her PCP first thing at 8am and spoke to the nurse about what happened. Dr. G is on vacation but we will let her know and see what she wants you to do. Within the hour, the nurse called back and said Dr. G doesn't even want to see her, she wants you to call Dr. F, the Cardiologist that visits here the first Tues of every month. Well wouldn't ya know....the next day was the first Tues of the month :( Ugh! I knew we wouldn't get in so that meant 4 more weeks of waiting!

January 2014
More flutters and more pain during the whole month! I kept a detailed journal with date, time, heart flutter, pain, blood sugar, activity, food, drink and whatever else was going on. I reviewed the journal with each flutter to see if there was any common factors. Was it caffiene? No! Was it exercise or activity? No! Was it blood sugars? No! Was it something she was eating? No! Was it a specific time of day? No! She had 7 episodes during January and nothing was common. Some had pain and some didn't. Some lasted longer than others.

February 2014
By now she'd had 3 episodes during February and she saw the Pediatric Cardio on Feb 11, 2014. We really liked Dr. F and she did a very extensive exam. She listened to Kacey's heart and talked with us about what was happening. She decided the best thing to do was hook her up to a haulter monitor for 30 days and see if they could capture this episode and review what was going on. Each time she had a flutter, she was to push the button and that would let the call center know to capture that episode and then they could review it and if anything was wrong or she was in immediate danger then they would let the doctor know and call us to advise us what to do next.

March 2014
During the 30 days, she had 4 episodes. Three of them were not strong enough or long enough to be captured by the monitor but on March 10, 2014, our world was rocked! Kacey was just sitting in her room in front of her keyboard. She'd been playing for about an hour when she got the flutter. It lasted longer and this time the pain was very deep in her chest. It was as painful as the ER visit one but didn't last as long. We sat on the couch together for a little while afterward just feeling her breathing. She was taking slow calm breaths in fear that she would have another one. The next day would be the 30 day mark...the day she was to stop the monitor. Thankfully we caught something and it was strong enough that hopefully they would be able to see what was going on. We didn't get a call....nothing....so maybe this really was nothing. Was she just growing? I know of growing pains but maybe this is related to that. Yeah, there I was just passing it off again! The next day, we got a call from Dr. F. She had reviewed all of Kacey's transmissions herself and wanted to know what was going on during the episode last night? I explained everything to her and she said well something serious was captured but she couldn't make a diagnosis yet because there could be other underlying causes. So she said she needed to discuss the results with us immediately but since we were an hour from the office she would do a phone consult. Her heart went into a V-tach rhythm in the bottom half of her heart when she had that bad episode. I had NO clue what that meant so she explained and I lost it. My body went numb like it did at diabetes diagnosis. She explained that normally with anxiety, stress, palpitations and such it happens in the top half of the heart. This was in the bottom half. She wanted labs done ASAP. She explained that several other things could cause this rhythm. Sometimes if potassium is low or other things were going on then it could cause the extra beats. She wanted us to go the same day but there was no way I would make it before the lab closed so we went first thing the next morning. They took several tubes of blood! The next few days were filled with turmoil. I had read a little more about V-tach and of course scared myself even more. By Friday, Dr. F called back with the results. ALL NORMAL! So what did this mean? This meant it was more electro involved than she thought at first. This meant it was out of her hands because Kacey had to be seen by an Electrophysiologist. There were only two in the state of VA, one at CHKD and one at UVA. Since all of her diabetes doctors are at CHKD, we decided that was the best place for her. Dr. F called and made the appointment but the soonest we could be seen was another FOUR weeks! As the weekend rolled around, Kacey continued to have episodes. Just small light flutters with no pain and then on Sunday night she had another bad one. The monitor was done, she had been unhooked and the episode wasn't captured. The next morning, Kacey went to school and I had coffee with a very dear nurse friend and fellow Christian momma. I sat in tears as I explained to her what was going on and how scared I was. As if Kacey doesn't have a crappy hand already dealt to her, this is just a mess! She encouraged me to call Dr. F back and insist on her being monitored because we both know how serious a V-tach rhythm is! I sat sobbing as my nurse friend prayed for me and for Kacey. I left there and I called Dr. F's office. I spoke with her nurse about everything and told her I was really worried about these episodes. She spoke with Dr. F and she advised us to go on and take Kacey to CHKD ER and explain she was having V-tach episodes and needed some evaluation.  So on March 17, 2014 we ended up in CHKD ER for 5 hours before finally being admitted to PICU for evaluation for the night. The nurse that came in was AMAZING and she went on to tell us her son was 24 and diagnosed with Type 1 diabetes when he was little. It was neat to have some D-Mom conversation! As she got upstairs into PICU, the nurses were buzzing because when they get patients in PICU with T1, it's usually because they're in DKA, not taking care of themselves or they've just been diagnosed. So they get very few come in there on a pump and taking care of themselves. Since her Endo is there on the same floor, they advised all the nurses that I would be staying and Kacey & I would be pushing all buttons on the pump but they could oversee what she was doing but since we were pros at this then we had the final say on everything. That made me feel really good! As Kacey was laying in the bed, we were watching the buzzing nurses outside the glass doors when we spotted a  young woman in green scrubs with a pink Ping insulin pump peeking out of her scrubs pants pocket. She came in the room with a smile and Kacey pulled out her pump. They had a pump bump moment and she was so excited! She was going to be her doctor for the night and she was explaining how she rarely gets kids in PICU on a pump so it was a special treat for her! 
Kacey was watched closely on the monitor all night including a battery of tests including bloodwork, urine tests, EKG, Xray and Echo. She was released the next day and an appointment was made with the Pediatric Electrophysiologist, Dr. R, for April 24, 2014....A MONTH! But in the meantime, they were going to hook her up to a different monitor called an event monitor. This will capture her episode when she pushes the button but it will not only capture the episode, it captures 45 seconds before and after the button push. This way they can see what is going on prior to and immediately after the button push.

April 2014
We're finally into April and things have been unbelievably calm. Was this a one time thing? Was this growing and finally gone? Nope! Two weeks into the new monitor she had another one. It wasn't bad but it was a flutter with pain. She had two more the exact same thing. On April 24, 2014, we had our appointment with Dr. R. I wasn't impressed with the 3 hour appointment.....one hour waiting to see him, one hour waiting for the copy of the transmission from the very first doctor (they should have had this already!!) and then one hour waiting for him to look at it and talk to us. His PA came in first and she was very young and very nice. She talked with Kacey and listened to her heart. She asked a ton of questions and took a ton of notes for Dr. R. When Dr. R finally came in to see us, he brought his PA along with another Cardio doc to listen to Kacey's heart. All 3 of them heard something in the bottom half that shouldn't be there. He discussed the transmissions with us that the monitor had captured. Since there was no reason for these episodes and nothing she was doing was bringing them on, he said next step was another 24 hour at home monitor, a treadmill test and an MRI so he could have a closer look inside. Once we did all of those, he would make a decision based on his findings. In the meantime, she was to have no physical exersion and no competitive sports. This also means no Busch Gardens and roller coasters too! He did explain that the medications probably wouldn't work in her case and she may end up having a surgery to place a device to help but we would discuss that when he got all of the results. So this was last Thursday....by Friday afternoon she came off the monitor with nothing captured and then Saturday......
Ohhhhhhh Saturday.....this was by far one of the scariest ones yet! We were visiting our friends like we normally do every Saturday night. Kacey was sitting at the dining room table watching her friend draw and just talking when I saw her grab her chest. I saw the scared look on her face...in fact it was nearly terrifying! She came in to where I was and said she was having a heart flutter that wouldn't stop. "Mom! It's still going! Mom! *cough cough* It's taking my breath when it flutters! *insert tears*" This lasted for several minutes this time with no pain. She coughed, she sat up, she layed back, nothing she did seemed to make it go away! It just kept fluttering out of rhythm. You could see the fear in her face and I tried NOT to show the fear in mine. Just as we were trying to make the decision about going to the ER, it stopped....slowly it went back into rhythm. She sat quietly for the next few minutes as tears flowed down her cheeks. She pulled me to the side and whispered, "Mommy I'm scared!" I shook my head yes and hugged her. WHY? Why Kacey? She's got enough to deal with living with Type 1 in fear that she will go to bed and not wake up....WHY THIS?!?! My 14 year old should not have to live with fear like that. I know we're Christians and as a child, death DOES scare her. Death SCARES me and I'm grown. She's very aware this heart rhythm isnt right and everytime it takes her breath she said she feels like it might be her last.

Yesterday was our annual Go Kart trip with church youth...we couldn't go! Kacey was so upset because she had so much fun last year. So we chose to go to the Gem & Jewelry show instead. When we got home, she had another episode! This morning I made a call to Dr. R's office and explained to them what happened over the weekend. The nurse was sooooo nice and she said she would talk to Dr. R and call me back but he would probably want to go on and put her back on the monitor while we waited for the tests to be done. This way he could see what's happening with any other episodes since they seem to be getting worse, more frequent and longer.

So thats where we are right now....HURRY UP AND WAIT! It seems like that has been the story of my life for the last few months. I've been held in limbo and we haven't had a diagnosis until last week but we still don't know what is causing it and we may never know. Thats a tough one! It feels like diabetes.....you have those out of the blue blood sugars and you dont know WHY you have them and there is no explanation for them. Same with what causes diabetes? We don't know WHY she is having these episodes but it's been established that it is in fact V-tach and they just have decide how they're going to treat it.

I've kept all of this off Facebook (except the message to a few D-Moms for support) and I don't want to broadcast it there because of all of the negative nellies I have on my page. I don't want Kacey reading all the comments about "Oh, my family member had this and they died." or "I know someone that had that and it went away". It's like listening to someone say "My family member had dia-beet-us and they had their legs cut off!" Ummmmm yeah, she doesn't need to read any of that and be anymore scared than she already is! I will continue to use this page as my update and outlet to talk about what is going on until we are ready to share on Facebook once we know what treatment will be.

In the meantime, please keep her in your prayers. She already has to go through life with the crappy diabetes hand and adding this into the mix just complicates things. She's so strong and so brave and she doesn't want others to see her crumble under the pressure. She likes to think she's so tough but then when she's alone with me, she lets her guard down. And even through the crappy hand and tears, she still manages to smile and bring joy to those around her. She's a light in a room of darkness and her faith for the Lord is unlike many of her peers. She stands firm on her beliefs and she isn't afraid to voice her opinion about them. She's mature on this road of responsibility and she knows right from wrong. She chooses her paths wisely and she makes me want to be a better Mom (and Christian!). She's a leader and has a strong sense of self and confidence that I've NEVER had...even at her age! She knows what she wants in life and she's a go-getter! I know this is another bump in the bigger picture of God's plan. It seems SO BIG right now and like diabetes, we're going to look back and wonder how we ever made it out on the other side but we're going to be stronger than we ever thought possible. It's easy to fall into anger, aggrivation, upset and denial. And it seems everytime I pull my Bible out and ask God to direct us, I have a sense of peace wash over me telling me it will all be just fine. Yes, it's scary! Yes, we may have a long battle ahead! Yes, there may be some things we may not be able to do again! But....we have to embrace the fact that we're thankful the monitor caught the V-tach rhythm and that we've got one of the best heart doctors in the state of Va on the case. So why should I worry? If I have God in my corner then why do I worry? Because I'm Mommy....that's why!

Thank you again if you've read my battle down this far! I do feel better for getting it out and talking about it. I miss blogging like I used to and I really need to make time to do it again since it's my FREE therapy! :) 

Much love to you all!

4 comments:

Joanne said...

Praying for you and your sweet girl. This post had me in tears... I can't even imagine how scary it must be for you and your family. Sending you hugs.

Kelly said...

PRAYING!!!! Be the Momma bear that gets HEARD!!! ((HUGS))

Jen said...

I think as D moms we are natural worriers because we deal with a disease that can not be healed. But I believe that whatever is going on with your daughter now can be healed and because your a D mom and she is a D girl, you guys will absolutley persevere and find healing and strength. because D families are the strongest!!! Here are a couple of verses, I hope you find comfort in them.

Jeremiah 17:14
Heal me, LORD, and I will be healed; save me and I will be saved, for you are the one I praise. (NIV)

Luke 8:50
Hearing this, Jesus said to Jairus, "Don't be afraid; just believe, and she will be healed." (NIV)

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