Miller Time: I can't promis this will make sence

Thursday, February 25, 2010

I can't promis this will make sence

I am sleep deprived and just emotionally beat. First of all I want to say that I have the best family and friends ever. You all have helped me through this difficult time. Even people I have never met have given me good thoughts of encouragement. There is so much good in the world and I wish it was not at these times when you always see it there.

Cache has had a rough day. He surgery took about 3-4 hours. There was an infection at the sight of the defibrillator and was starting to creep up the outer wire. So everything was removed and he was flushed out. They placed two drains, one by the heart and another in the stomach where the defibrillator was. They then placed temporary lines and are currently pacing him externally. Cache was still very out of it when we finally got to see him. He was pale and clammy, but we thought it was just the medication and he would be bouncing back soon. Eric and I decided to grab something to eat while he was asleep. When we cam back Eric and I both thought he looked worse and more pale. I then grabbed his hand and it was blue and cold. The nurse at the time had another child she was trying to take care of and I think she was way too busy to have Cache and the other child. Once we got everyones attention they were on it. This now holds a tie with my other worst day ever. Cache began to seize and his blood pressure began to fall. Seeing someone seize is not a pretty sight. It is horrible! They found out that his blood sugars were low. It brought back a lot of memories from last summer with Dylann and her blood sugar doing the exact same thing. That is the day that ties this one for worst day ever. They are not sure why his blood sugar dropped, but I think it is probably a combination of things such as stress and medication. There is a chance for infection in the brain and/or spinal cord, but all the tests are showing negative. Which could be a good thing because we can manage the sugars without anymore problems.

Cache is now sleeping quietly next to me and is all drugged up. We have a awesome nurse tonight and he is so on top of his care. God should bless good health care workers!

Keep us in your prays as our battle is only 1/3 of the way there. Lots of love to all you!

2 comments:

Nisa and Colby said...: Oh my goodness, you poor thing! Seizures are scary, but I can only imagine how much scarer they are when it's your own child. I hope everything starts getting better soon for you. Your in our thoughts and prayers...love ya!; February 26, 2010 at 2:36 PM
Melissa said...: Scarry! I'm glad that things have been stableized!! When will they put in the new pacer?; February 26, 2010 at 3:18 PM

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Our Long QT Syndrome Story

My teenage years were full of sports and exercise. There was not a day that went by I didn’t have some sort of game or practice. My days consisted school, track, soccer, a jog, and finished up with some strength training. Never would you have guessed my heart was broken. I was older, married and about to have my second child, Cache. I was off to my usual 32 week check-up at my obstetrician office. That was the day our lives changed forever. It was that exciting moment when you get to hear that slushing heart beat and know that the big bump in your belly is this living being in your body. That slushing sound turned out to be my nightmare. My doctor explained to me that the baby’s heart rate was far too low and that my son had something wrong with him. This is something you never expect to hear when you are having a baby. Babies don’t come out sick? At least that was my naive way of thinking. My doctor told me to walk over to labor and delivery and he would meet me there as soon as he was finished with patients he had in his office. When I got to Labor and Delivery, they strapped me up to all these machines, and I had instant panic around me. Nurses were rushing around and almost screaming. All I could do was sit there and wonder what was going on. Next thing you know I was being prepped for an emergency C-section. That was until my doctor walked in the door and told them all to calm down. It was a sigh of relief. My doctor performed an ultra sound along with what felt like another 30 doctors. They all agreed with one thing, my baby was fine for now and needed to stay right where he was. He stated that there was something defiantly wrong with his heart, but until he was born they would not know what. After 36 weeks and lots of daily monitoring and doctor visits, I was induced and my beautiful little boy Cache came into the world fighting like a champ. The next few hours were about to change our lives forever. Cache was diagnosed with Long QT syndrome a few hours after birth and was immediately transferred to Sunrise Children’s Hospital. I was discharged and headed there to figure out just exactly what was to happen next. There we were greeted by the pediatric cardiologist who had done an ultrasound on Cache’s heart in utero. He began to explain the details of Long QT syndrome and how they treat it. He then told us they could not treat Cache because his heart rate was already dangerously low. To fix this, our son was to have open heart surgery and have a pacemaker placed. A pacemaker, isn’t that for old people? We were numb and just in a really bad dream. Three days after our perfect son’s birth he was placed with a pacemaker in his little tiny tummy. I remember that day clearly and as I held him waiting for the surgeons, Landslide by Fleetwood Mac was playing on the radio. It was a Saturday morning and we meet the surgical team. They answered all are questions and we walked my infant son down a long hall. We gave him a kiss and we said good-by. The hospital waiting room was a ghost town. We waited, and waited, and waited, and then did a little more waiting. I clearly remember seeing the whole surgical team walk into the deserted waiting room. My heart sank and I think my knees nearly hit the floor. Why were all of them coming in? Why did they all need to talk to us? As we approached them the head surgeon said “Everything went great.” The best words we had heard our whole lives. I am not the “reach out and give a hug to a stranger” kind of girl but I did just that. The next few weeks, after Cache’s pacemaker placement, had its up and downs. His heart rejected the pacemaker and fluid began to build around his heart. They eventually had to go in and put a drain in to his heart to relieve the fluid. We had trouble with feeding and jaundice. It was three weeks to the day that my son was able to come home and have his two older brothers hold him for the first time. Life with Cache has proven to be a challenging one. Cache never passed a newborn hearing screen and while most parents would be freaking out about this, we had much bigger fish to fry. We were told at the time of his birth that Cache could have a very rare form of Lonq QT Syndrome called Jervell and Lange-Nielsen syndrome. This rare form of Long QT Syndrome causes sever to profound hearing loss. At about the age of three, this was confirmed through genetic testing but Cache also carries another genetic strain as well, Long QT Syndrome type 1. No one, as of then, had ever carried these two genes on the national registry. He had a double dose. It was also confirmed that I too had Long QT Syndrome type 1 and so did my other two biological children. Through the years Cache has had many obstacles he overcame. At the age of 2 ½ he had a deadly arrhythmia and was lucky to be alive. After that arrhythmia, it was then decided Cache needed his pacemaker replaced with an Implantable Cardiac Defibrillator (ICD) and have a left cardiac sympathetic denervation. It was a little over a year after the ICD placement in his stomach that it became infected. The ICD was removed and he was placed in the Pediatric Intensive Care Unit for a week until it was decided that he was big enough to have an ICD implanted in his chest. A few weeks later he had to go back in and have pieces removed that had been left in him on accident. Cache is a thriving child and plays like any other child. We have been very blessed and we all consider him our life saver. He not only saved his Mom, brother, and sister, but his Uncle and three cousins. I am the luckiest Mom in the world to be Cache’s Mom. He has given me far more then I could ever give him. Cache inspires people with his amazing smile, big blue eyes, and love of life. Cache has taught us and everyone surrounded by him that life is far too short and life is more than just the daily grind. It is about living life to the fullest and making sure those who you love, know you love them. It is about today, and living in today, not about what can happen in the future. We have today and that is all we need to get to tomorrow.

Miller Time

ERIC-MELISSA-YORK-MASON-CACHE-DYLANN

Thursday, February 25, 2010

I can't promis this will make sence

2 comments:

Come What May and Love It

How Two Made Six

Our Long QT Syndrome Story

Cache...Living with Long Qt

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