Sunday, February 28, 2010

Valiant Hearts with Rhythm

Today I submitted a story about Cache to the website called One Life, One Legacy. I can not think of a better way to share Cache's story and show him just how brave and special he is. This web site picks a few special people and makes a shirt with their "slogan". Cache's is "Valiant Hearts with Rhythm". He has nothing short of a brave heart and lives his life full of rhythm. They will soon post his story to there blog. I hope all of you go on and tell them just how great he is. So when they do make his shirt, we can all get one. Here is the story I submitted.

Cache is an amazing brave child! I call him our life savor and hero. I can not begin to describe how much this child has and will endure in his life time. Cache was born at 37 weeks, 7 pounds 14 ounces, 19.5 inches long, and came out fighting.

When I was 32 weeks along his heart rate had dropped dangerously low. After many tests and a big scare they decided that he could be monitored for a few weeks until he was ready to come out. When I was 36 weeks they decided to induce me. They knew something was wrong with his little heart, but they were not sure what. Less then 12 hours after birth he was being transferred to the pediatric hospital, and I was being discharged. When we arrived at the hospital we were told that my son had a genetic heart condition called Long QT. Enable for him to be on the medication to save his life, he needed a pacemaker. Three days after birth, my son was going in to have open heart surgery. A few days later his heart began to reject his pacemaker and they had to go in again and drain the fluid building up around the heart. My superman made it though the first month of his life in the NICU and was soon able to come home. This is where his journey has begun.

Cache has two genetic dispositions of Long QT. Long QT1 and Jervell Lang-Nielsen syndrome. When Cache was 2.5 years old he was diagnosed with sever to profound deafness. This is a side effect from the Jervell Lang-Nielsen syndrome. Although his ability to speak is a challenge for him, he does not let anything stop him from living his life.

In July 2008, Cache had a deadly arrhythmia, but we were blessed by angels and his heart bounced back. In November 2008, another surgery was performed to place a defibrillator and have a sympathectomy performed. He did well and has never had another arrhythmia since.

Today, I am sitting in a hospital room because my son’s defibrillator was removed due to an infection. We will be in the PICU (pediatric intensive care unit) for 2-6 weeks trying to get rid of the infection. After the infection is gone he will be having his 5th heart surgery to place a new defibrillator. When I saw this website, I knew this would be a great way to tell everyone what a brave and amazing child my son is. By him enduring so much in his short 4 years of life, he has saved his brother, sister, uncle, and cousin’s lives, as they too all live with Long QT. Without his trials we would have never known about this silent killer that takes so many young ones lives. It is now our mission to inform people about Long QT and try to save lives. We are truly blessed by him and he is our brave hero and life savor. He lives his life to the fullest and never lets all his trials get in his way. Anyone who has met him will tell you he is an inspiration and full of courage. He has made our world a better place.

Valiant Hearts with Rhythm

Saturday, February 27, 2010

Day #4 at the Hospital

Cache with his Froggy after surgery

Eric and I are trying to tag team it. Yesterday was the first time I ever left any of my kids in the hospital since they were born. I know we have to prepare for the long haul, so I know I need to make sure I am getting some rest. I am no good to anyone tired. I think the last 3 days really wore on Eric and I. I think now we both have had some sleep and are ready to tackle this long journey ahead of us. So for a brief update from where I left off.

I honestly cannot remember everything that happened yesterday. I know he was drugged up most the day and did not have anything major happen. I also know it was a much better day then the one before. They did move us to a new room in the PICU that is so much better. I even got a little couch to sleep on, which they don't do too often in the PICU. It is so nice; the night before last I had to sleep in the bed with Cache and we were right next to the tube station. It was so loud!

Today Cache woke up in a good mood. You can tell his little personality is coming back. He had a pretty good night and only woke up about 3 or 4 times. They were a little concerned with his bladder and that he was not going potty. They completed and ultra sound and found it was pretty full. Before they cathed him we decided to let him try to stand and pee, and it worked. Another concern this morning was his lungs. His oxygen levels were getting a little worse. This was also causing some fevers. So the plan was to get him to stand and sit in a chair. He was very scared the first time he stood, but after that he was ready to get out of bed. He went for two little walks about 20 feet. He also sat up in a chair on and off the whole day. This got his oxygen levels up a little better. It also helped him to start tooting, which is good thing. He thought it was pretty funny too! Later in the day they said they found some gram positive bacteria growing on the old pacemaker and the tissue where it was. They said it was very little, but growing. I am not sure if this is a good thing or bad thing. Some of the Infectious Disease doctors said they wanted something to grow out so they knew what they were treating, while others said that if it didn't they could do the new ICD placement sooner. So we are still at the hurry up and wait stage. They are still saying anywhere from 2-6 weeks in the PICU and they are just guessing. I don't think anyone really knows what is going to happen. I think we should have a better guess on Monday.

Eric and I tag teamed it today. He got here in the afternoon and I went home to be with Mason and Dylann. I had not seen Dylann since Wednesday night so it made me so happy to see her. She gave my a big hug! I also got in a much needed 2 hour nap. Tonight we had one of York's friends babysit them while Eric and I hung out at the hospital together. I think juggling the other kids will be the hardest thing. They seem to be doing very good, but they miss their brother lots. Mason keeps talking about Cache and Dylann saw his picture today and said hey it's Cache. I asked her if she missed him, and she said yes. They are best friends. All my children are very close. We are trying to get our video chat to work so the kids can see one another. They are not letting anyone under the age of 18 in the PICU right now due to a major RSV breakout. I think it will be good for all of them, including Cache.

It was a good day today, and Cache hit some good mile stones. We still have this infection to fight, but I think we will get there. Although it seems like we have been here forever, I am sure when all is said and done, it will seem like nothing. This too shall pass.

Cache sitting up for the first time since Wednesday

And a few quotes from Mason

Today Mason made me laugh and cry. Here is just a few of the things he told me...

Mom: Hey bud what are you doing?
Mason: Oh, I am just thinking about Cache.

How cute, he loves his brother

Mason: Mom who did Caches surgery
Mom: The doctors
Mason: You are a doctor
Mom: No I just used to make the medicin for the sick kids
Mason: I am going to be a doctor
Mom: I thought you wanted to be a police officer?
Mason: Well I want to be a firefighter, police officer, rock star, or doctor. But it is just so hard to decide.

Really, a rock star? Where did you get that? And I think we have some time not to stress over this.

Mom: Mason did you take you medacin today?
Mason: Ummm I don't know.
Mom: Ok I will call Dad and ask.
Mason: What would happen if I took 2?
Mom: Well that could be scary and you could die.
Mason: Well I don't want to die.
Mom: Well that is good because we don't want you to die either.
Mason: That is because you love your son and you love him more then anything else in the world. You can't love anything more then your son.

Oh baby boy you are so right. I love all my son's and my daughter more then anything else in this world!

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!

Wednesday, February 24, 2010

Heart Surgery Number 4 and Counting

Well we are here again, sitting at hospital awaiting another surgery. This one came on a little rapid. To give those who may have missed out on my updates...

Cache has had his old scar from his ICD (internal cardiac defibrillator) looking a little red. It then proceeded to swell up. I took him to the pediatrician and they tried to lance it to see if fluid would come out. Nothing did, so her initial thought was that it was scar tissue building up. So she referred us to a plastic surgeon to possible have the scar removed and then re-stiched.

Shortly after our visit his scar became worse and then proceeded to swell more and the fluid was very visible. Two nights ago it exploded and began to drain.

Today we visited the plastic surgeon, Dr. Warnock. He was awesome and said that he felt we needed to go to cardiology. (This is what I should have done from the beginning, but I tried to not panic.) So then came our visit to cardiology. Which they had already been forewarned by Dr. Warnock. What a great doctor. He took the time to call cardiology and the surgeons to tell them about us. He was so worried about Cache and did not want anything to happen to him. (If you ever need plastic surgeon, go to him, he obviously cares about his patients! I love great doctors!)

So here I am sitting at Primary Children's surgical floor awaiting our surgery tomorrow at 9:30 am. They will go in and take out the ICD and check to see how far the infection has spread. Antibiotics will not help infected foreign objects in the body. Once they are infected they stay that way. The only way to get rid of them is to take them out and let the body heal. They will then clean him out and place temporary leads. These leads will keep him paced externally. They will do this until the infection is gone. After the infection is gone they will place another ICD. Their hope is that he is big enough to have in go under his clavicle and the leads will actually go into the heart. They feel this will have a better success rate then putting another one in his belly. What we can hope and pray for is that the infection has not spread far and that it heals quickly.

My thoughts are just overwhelmed. I can't believe I am here again. I have the strongest child in the world. He amazes me everyday and always puts a smile on my face. God blessed me with a wonderful son and I can never imagine a life without him. He is my inspiration in life. God has been with him through all this and I know he will be with us tomorrow. Good luck Cachers, be that strong boy that everyone already knows you are.


Thursday, February 18, 2010

Just a thought...

Since I have lost a hearing aid today, I thought of one random thought.

Cache walks around with about $79,000.00 on him.

$4,000.00 in hearing aids
$75,000.00 in his tummy (ICD)

That is a lot of money for a 4 years old to be carrying around!

Wednesday, February 17, 2010

Lunch with Mason Highlights...

-His more then willingness to grab his sister and mine hands and proudly walk down the long does this last?

-The 3 little girls eating with us and them wanting to know all about eating healthy such as: what is the 1% mean on milk or what are carbs and "carrotts are good for your eyes". (Just incase you were wondering!)

-The little girl that turned to me before leaving and said she wanted to have a playdate and that she will ask her mom.

-The fact that I said I was going to beat Dylann in the hall if she did not stay put, maybe I should rethink my threats while in the school. Hopefully I do not see CPS tomorrow. THEY ARE JUST THREATS!

-And finally...the mom volunteering for recess duty all dressed up as if she was going clubing with highheel boots and all. I think good kicks are appropraite for recess duty. REALLY!