Monday, October 12, 2015

Not Dead Yet!

Okay, when I last posted I was doing a quilt giveaway.  My very favorite dog rescue, Friends of Emma.  Elizabeth and Kylie Hart run an in home critical care rescue.  We had 57 quilts to get donations for and a $300 reserve for each one.  It was a lot of hard work but I discovered my inner cheerleader.  The money raised will buy a backup generator for the ICU room among other things.  They are always having fundraisers and asking for donations because there will never be a time money is unneeded.  There are dogs that are being raised and given the medical care they need to eventually be adopted out and there are dogs that have too many medical needs to ever leave.  They will be cared for with tenderness and love until their natural passing or until their quality of life is too compromised.  Being a critical care rescue, there is a much looser standard for this than most people possess.  But make no mistake, they are quite capable of making the tough choices.  I am so glad we were able to get all the quilts to at least reserve. 

Then there are the auction dogs I have been doing since July 2014.  Two ablations, a death in the family and just plain life slowed me down to the point that they were all finally caught up this month.  That's over a year but everyone has said they were worth waiting for.  I will be back doing them after I complete some projects for friends I have been putting off.  I have a seal scarf, a polar bear hat, a Tuxedo markings cat, a pair of bunny slippers, a pair of men's slippers, a newborn baby boy outfit and a pair of dresses for twin girls in a twelve month size.    So far I have about 12 inches on the seal scarf.  I am enjoying making something besides dogs and using bigger hooks. 

The best news of all though is about TJ.  Back in April he had a holter monitor done off his medication.  That was not something I would like to repeat!  His average heart rate at rest was in the 170's.  Then in July he had another one done on his medication to make sure it was always working, that no arrhythmia's were sneaking through.  He had an ECHO done at the same time to make sure his heart was working well.  Luckily both tests showed what they were supposed to.  We had an appointment to go over the tests but they changed it twice.  We were not too happy about that because we really wanted to know about the July ECHO and holter.  But the time finally came and we had the best appointment we have had since this mess began.  Loma Linda is getting a new heart mapping technology that is supposed to have a much better chance of keeping up with his particular arrhythmia.  We were told its called multi-focal but if you look it up you going to get confused.  TJ is neither geriatric, nor does he have compromised lungs.  Whatever it is called, the ideal situation is not to be on meds for the rest of his life.  They don't have a long term effect on the body but the side effect is driving him nuts.  Fatigue.  He is 17 and tired of feeling like an old man.  I can't blame him.  His doctor was they are negotiating price right now and hope to have this in place as quickly as the next six months or so.  He did say that new technology or not, he's not going into his heart a third time without a better idea.  I like that! 

Anyway, that's all the news I have but we are definitely excited about the possibility of there being an end to this.  TJ is not thrilled its still an ablation but can live with another if it works.

Tuesday, September 15, 2015

Super Awesome Fantabulous Quilt Giveaway!

57 - Yes, you read that right - 57 SUPERCALAFRAGILISTIC QUILTS!!!

Donations levels for every budget - $5 to $20 and you can donate the minimum as many times as you want.

Doubling, Tripling or even Quadrupling your donation increases the chance that you will OWN that quilt.

Donate on behalf of a friend for a birthday present and then if they win, give them the quilt! Or not. ;)

I am partial to quilts 04 and 38 but donate to whatever floats YOUR boat!

It all ends on October 6 so don't let this pass you by - win a quilt, help a pup - either one is a winner.

Don't forget to specify the HOST NAME and QUILT NUMBER.

These samplers only show FOUR of the FIFTY SEVEN choices

Find the quilt of your dreams, note the number and look on the link below for its match. All the information is on the link for size, etc. :)


Sunday, May 3, 2015

Chaos from a 16 Year Old's Point of View

TJ has to write a personal narrative for his school and he chose all his recent troubles with his heart rhythm. He wrote for four straight hours and poured out all the feelings and uncertainties he experienced and to some extent is still experiencing. I am very proud of what is he has written and thought I would share it with people that care about him.    

Personal Narrative: My Eventful 2014
       When you think of that title, it doesn't sound all too bad. Normally it just means a lot of things happened, and may have been exhausting to the witness. But, in fact, it was probably the worst and most painful year of my life. But it was towards the end, that the peak was hit. And I will talk more about that later on. But, for the time being, I will go all the way back to January when I had my first appointment with a doctor in a very long time.

       His name was Dr. Alfred De La Torre, he seemed like a nice, caring guy and although he's not evil in any way, he's not the brightest. He talked to me about my past, what prescriptions I had, why I had an appointment, basic things like that. Then, came the genesis of my current, probably life-long situation. The nurse came in and checked my blood pressure, which, at the time was an unspeakable abomination of a number. I don’t recall it whatsoever, but I know the bottom number was above 90 and that is potentially dangerous. She then took my heart rate, and the utter shock she was in was palpable. She left the pulse oximeter on my finger for a while, just to make sure there wasn’t a horrible error. But no, it was reality, my pulse was along the lines of 196 beats per minute. The doctor’s reaction though showed just how inept with my possible condition he really was, he figured it was just built up stress and actually removed me from my previous online school for the remainder of the year. This was 3 months or so it didn’t result in huge consequences or anything.

       Now, I will provide some background to add to the events that were transpiring. For about 3 to 4 months before this, I was going to the gym and generally exercising. I did go into the indoor pool most of the time though. It was around this time that I noticed something may be wrong. I rode my bike to and from the gym, which did not help whatever was happening. After every single workout and bike ride, I honestly felt as if I was going to drop dead on the spot, or pass out. I felt something frightening and that which I never had before, my heart beating without even trying like putting my hand over my chest. But really, I was none the wiser, I chalked this up to nothing and just felt it was something that would pass. 

     So, after that display of idiocy he showed by sending me out with a pulse of 196 and not doing anything about it, I just gave in and let things happen. It is true that I was stressed, but even the nurse’s expression showed that she had more knowledge about it than him, and how it was not normal. This was also the time that my grandmother and aunt went out to sell the latter’s house, as her run-in with lung cancer disallowed her to stay any longer in the cold climate of Missouri, and she moved out here. Nothing was getting better, it was May by the time they came home and my pulse was up and down constantly. In that month, I went to a second appointment with him and finally he called the Hemet Heart Center and had an appointment made there for later in May.

      By the time it rolled around, I was extremely nervous, frightened, and stressed, all of the above. And was even putting on a trend of fairly long-lasting panic attacks. We arrived at the building and I was pretty cold, yet drenched in sweat from a heart working around 10 times as hard as it should have been. The waiting room was insufferable but the place was surprisingly packed for such a little building, and patients with heart problems most likely worse than mine were present. But after about 35-40 minutes of waiting, I and my mom got in and the nurse did an EKG or electrocardiogram. Since this test covers all bases of the heart’s electrical activity, there was no way it didn’t find out anything. And I was right, although she didn’t mention it, she simply told us to wait for the doctor to come in and walked out, clearly flabbergasted.

     After about 10 minutes, and me still able to feel my heart beating out of my chest, Dr. Riva the Cardiologist came into the room. He didn’t really discuss the intricate results of the EKG, he simply looked at the heart rate and hit the roof. Let that sink in for a moment... my pulse was around 180 here and he almost fainted, while at Dr. De La Torre’s office it was 196 and he shrugged it off. But anyway, after his quite literal freak out, hearing over him on the phone going “I have a 16 year old here with an extremely high pulse and I am sending him over right now, no questions!” This of course, added to my already high pulse and level of fright.

      We exited the room, got out of the building and right back into the car. The emergency room was not far at all, it was quite literally next door to the heart center, but that was not what I was worried about. Just like at the center, I and my mom went in while my grandmother, the driver, waited in the car. I sat down and the man at the office desk took my blood pressure, which was horrid. He then told me to follow him and we ended up in a room with a bed and EKG machine sitting next to it, so you can guess what happened there. After that was done, I was led into a public area with a bed, monitor, IV stand, and cords lying all over the place. They got me laid down, put a pulse ox on my finger, and inserted an IV which should have stung but with how fast everything was happening, I barely felt it.

     This as a whole was a pretty scary experience for many reasons. I had never had an IV and it is uncomfortable, I had also never been in a hospital for more than a day, as in when I was a baby, and with my Asperger’s, it was sensory overload all the way through. My heart rate was nearly 200 by the time I had been put into the bed, so they tried two things to reset the rhythm. First, they brought in Adenosine, which when administered intravenously, can slow the rate down. And it is a very odd and uncomfortable pressurized feeling that you get seconds after it goes in, as if someone is pushing down ridiculously hard on your chest. Even after two doses though, it only brought it down to 180. That is still way too high, so they wheeled in the last resort. It was a big machine with cords hanging over it, and buttons with a small screen covering the front. They then attached three or so large pads with what I later figured out was conductive gel covering the bottom. Before they went through with it, the nurse gave me versed, which is both a sedative and produces an amnesia effect.

      I don’t know if the dose was too low or my mind was too active, but it barely worked, and I still remember the deafening electric blow to my chest from the machine. I’d compare it to being hit as hard as humanly possible with a baseball bat to the sternum. After that, they decided to finally leave me alone for about 2 hours and my rate did actually lower. That is, until those two hours were up and it skyrocketed again. And so, I was admitted to Hemet Hospital.  Thankfully, my mother stayed with me so I wasn’t completely alone, and nurses came in once in a while. On my second day there, I was introduced to an electrocardiogram through ultrasound. This produced a picture of my heart through running a wand tipped with gel across my chest so they could observe what exactly was happening.
      This process lasted about half an hour and while they thought they found out something, it was later revealed to be nothing. This however did not stop them from seeing what my heart did while beating extremely fast, which honestly looked like it was having a seizure. For the rest of the day after that, I mostly slept and then at night, turned on the TV that I had just realized was in the room. I had also not eaten anything for almost 24 hours since my condition was sapping my appetite and making me really nauseous and tired. The next day though, I did feel up to it just enough to order breakfast, but didn’t eat all of it. I was currently waiting for Dr. Riva to come in this time because he was going to give his consensus. At around 2 PM in the afternoon he did and said while things don’t look good right now, he didn’t think it was life-threatening, and it isn’t, just debilitating and annoying. He suggested something called ablation, and I had no idea what that was at the time, but… now I do, I definitely do.

      He gave it another day and it didn’t get better, a little alarm on the heart monitor in the room was going off every five seconds because it detected what I eventually came to know as Supra-Ventricular Tachycardia. The tachycardia part basically meaning a fast heartbeat, but this special description was used as an indicator that any time it could go from a not great heart rate to a dangerous one suddenly. So finally, the hospital called Loma Linda University who they thought could handle my condition better than they could. At around 11 AM, the ambulance rolled up and I was put on a gurney and wheeled outside into the vehicle. This was another fairly stressful experience, because, like everything else, this was all new and not a happy situation.

      It was about an hour long ride to Loma Linda from Hemet, the people in the ambulance were really nice and understanding about everything. They were cracking jokes and overall trying to make me feel better, and it did work to an extent. I was a bit calmer than I was at Hemet Hospital, because, to me, they weren’t taking care of me very well. I know it’s because they had never had a patient as young as me and didn’t know how to handle it, but I just didn’t like their ways. They didn’t even let me get up and move around because they were scared for my heart. So after the ride, we pulled up to the building and got out. I was wheeled through the halls, up the elevator, and finally into the children’s hospital section on the cardiac wing, and into a room. Everything that happened at Hemet Hospital happened here, minus the electricity and Adenosine. I did however have to get a blood test and I know I received more of those in that week I was in the hospital than I have in my entire life.
     This hospital was a lot less boring than the one back at Hemet, they actually allowed me to move around and walk down the halls. They encouraged it in fact, due to the hastening of blood flow. Later that day, they introduced me to a medicine called Metoprolol which came in a syringe filled with red liquid that I was supposed to squeeze into my mouth. I was given this in pill form briefly at Hemet Hospital, but it barely worked. Here at Loma Linda in the liquid form though, it worked quite well for the first couple days. It kept my heart rate below the 80s which is great. But then it just went right back up, and the stress and fear returned. The next day, I learned further about ablation and that it was going to happen to me on Saturday, which was the very next day. So all day I watched TV, slept, and ate a lot more than I did at Hemet. Then Saturday came, and the ablation was scheduled for the afternoon.

     I didn’t really know what to expect, but I attempted to stay calm and just let things happen. At 1 PM, the nurses and a couple doctors came in and unhooked me from most of the things, and put me on a portable version. So, the same way I came into the hospital, I was rolled down the hallway and into the elevator. But this time, we were heading down, to the catheter lab. This was an interesting room to look at, there were machines lining the walls, cords strewn everywhere, monitors in most directions. And about a dozen computer monitors in a smaller room, just by the one I was in. And just next to me, was a surgery table. I was told to get myself off the bed, and get onto the table. Once I was there, one of the doctors went and grabbed rather large patches that were extremely cold when put on my back. I still have no clue what they were for, but afterwards, I lied down and was covered in sheets and a blanket, all except for my lower region. From this point on, I didn’t really know what exactly was happening, I just partially felt it. Both sides of my groin were numbed, and a variety of sedatives were put through my IV that both made me remember basically nothing about the experience, and lessened any pain I could have felt. I do know now however, that it involved a bore needle that they use to poke a hole in both sides of the groin, and then they snake two catheters up through the respective arteries to your heart. They then burn away tissue they called pathways that are causing the problem.

    The end to the operation though, was unfortunate to say the least. It did not work one bit, and the person conducting the ablation, Dr. Mandapati, had no clue why. So I was left with a still rabid heart and now a sore groin. After about two days in the hospital, I was let out with a prescription for the pill form of Metoprolol to try to slow things down. It wasn’t until the middle of June that I and my parents realized that it was not working as it should. Although the pulse was lower than it was at the hospital, it was still high and out of a proper rhythm. My follow-up with Dr. Mandapati was in July so it wasn’t going to be that long before we figured out what was going on. But until that date, I had the exact same symptoms I did since the very beginning, and barely felt up to doing anything. This was a pretty opportune time to be out of school, since this would have had a bad effect on my schoolwork as well.

      July came through, and we took that hour long drive to Loma Linda which we’ve now had to do about seven times for appointments. The waiting room wasn’t as bad as Hemet Heart Center however, and it was a much larger building with more to see. There was even a gift shop in the lobby which I have used all seven times for snacks because I get hungry every time. That and the appointments are always in the early morning. The time finally ticked to 10 AM and we went on the elevator, leading up to the hallway of various offices. I was so very pleased to get yet another EKG, and my blood pressure/heart rate taken. Dr. Mandapati came in shortly after and discussed the results as well as exclaimed that the medicine didn’t appear to be doing anything. He then talked about his plan for a second ablation on the first day of October, and believed it would work like he wanted it to this time around.

Something horrible happened in-between all this though. My Aunt Janice, who lost half her lung to the cancer, developed Congestive Heart Failure and ended up in Hemet Hospital. The pressure on her lungs also resulted in Pulmonary Hypertension, which is essentially death by suffocation. She passed on the first of September, but it was thankfully peaceful because her heart simply ceased. This did not help my situation, and ended up with me falling into depression in addition to everything else that was happening. It was not a fun time to say the absolute least.

Finally, October came around, and I had the second ablation. But this was an odd beast, as when it was over, Dr. Mandapati said that when he burned the tissue, the pathway would move elsewhere and he was literally chasing the rhythm. At this point, he was really frustrated and put me on my current medication, Sotalol. It was 80 mg in one pill, twice a day, and it worked quite well for a couple months anyway. My Cardiologist here in Hemet raised the dose to 120 mg, still same pill and twice a day. This is the current dose I am on and it actually has worked since. So, although 2014 was a pretty horrid year, this one hasn’t been as bad. And there is a chance, that when I am around 30 and my body has stopped growing, the structure of my heart will be clear enough for an ablation to work. So for the time being, I am taking the pill, and it has shown no signs of deciding to not work anymore.

Tuesday, March 31, 2015

Making Scrambled Eggs-A Picture Post

Peanut makes sure TJ does a good job whisking

Much better job today on the spray!

Ready to cook (we are not looking at the stovetop-lol)

Picking just the right piece of bread

Time to learn how to move those eggs around without losing them over the side

Doing great!

Its beginning to look a lot like scrambled eggs

Eggs done, how about that toast?

Discovering that the spatula works better for spreading than the butter knife

Much easier

Pizza cutters work wonderfully for coordination problems

Breakfast is ready!