ERIC-MELISSA-YORK-MASON-CACHE-DYLANN

A HOME FULL OF HEARTS THAT ALL BEAT TO A DIFFERENT DRUM


Sunday, October 26, 2008

Were Home!


My first night home! I am happy!

Yes we are home and all is well! As most of you know we did get bumped on Tuesday and rescheduled to Wednesday. I had to be understanding because the doctor had to do a heart transplant. If I were at work I would have been drawing up all the medications up for this, which is a daunting task and you don't want to be the one on shift when you get one! As I put it, the haunt me at work and at home! We left the hospital on Friday, much to my discouragement! Cache did excellent during his surgery. I am amazed at how great things went.


Look! I will show you!

We had an awesome surgeon, Dr. Kaza. At first, I was a little weary of him because everyone in the pharmacy told me to have Dr. Hawkins do it. When I met him finally on Wednesday, my worries were gone. He explained the surgery and how he did not have to crack his chest because he has studied a new method of doing this through the left side. He did name drop which I didn't mind seeing as he was taking my son into surgery in an hour! He attended Harvard Med school and practiced at Boston Children's and this is where they did this new practice of putting in ICD's. They would use a scope and collapse the left lung. I don't really know why this sounded better then cracking the chest but it did! Then they would put the leads in through that small incision in the left side. They would reopen the belly and place the ICD in. It sounded great to us! Especially when he said less recovery time!

They did inform us half way through that they were done with the leads although they could not use the scope so the small incision turned out to be a big one! He was doing fantastic! It was great to hear! It was only an hour into surgery. About 1 1/2 hours later I saw Dr. Kaza coming. He had a smile on his face so I knew it must have went well. It wasn't as scary as the first time! He said it went perfect and they were moving him to the PICU right now. We were so happy and releved.



This is when they moved me up to the floors, I really like the drugs!

It was a long night in the PICU. They have no beds for parents so I slept in a rocking chair. If you call it sleep! Eric left around 7:00 p.m. that night. I stayed the whole time. He did have some strange tracing on his monitor. The PICU attending would come over and then it would go back! They nurse and I would just laugh because he thought we were crazy. We did find his magnesium levels were low so they gave him a few doses. Overall for the very tiring night, things went well. They did find the monitor was malfunctioning with the pacer, but his pacer did need to be adjusted. We went up to the surgical floor the next day which I knew would be nice because I would have a bed! They took out the chest tube and up we went! Cache and I just maily slept in the bed together which was nice because I got to cuddle him! I never get too so it was nice. You could tell he was not himself bacause he is a "monster" and runs around like crazy! He wouldn't take any medication that was liquid although we tried. So I had to have them change all the orders to tablets. Yes he can swallow pills, they were all so amazed by this. The next day they said to go home! I was scared and did not want to leave. I am so worried he is going to get hurt or get an infection, but they reassured me he would be fine.

So he seems to be doing great. He is finally eating and he even pooped! He will be happy to show you his wounds if you come over and will sign hurt. He knows that there is something in his belly and keeps feeling it. You can really see it, it is huge compared to the last one, which we got to keep! Don't ask me what I will do with it, but it is cool to see it. He walks like a little old man hunched over. I can tell he is still in pain but he is trying to keep up with everyone.




See my tummy!

We could not be happier and thankful that things went so great. I want to thank everyone who helped, called, and prayed for my little boy! It must have worked. He is such a cute little one that is stronger then anyone I know. We are forever grateful that God has blessed us with him and has given him so many chances at life. Thank you to all the doctors, nurses, ok I must say pharmacy peeps, and technology that helps keep my little guy going. I am happy to report I have not taken Xanax since Tuesday night. Although I will never give up coffee. Once again thank you!



Here are the my wounds, pretty gross, hu?

P.S. I know it is long but I never want to forget!

Friday, October 17, 2008

"How do I do it?"

This is the question that has been ask so many times this week! Many times at work! Here is my secret answer...



Coffee and Xanax!

No I am not strong! I depend on my favorite drug coffee and my newly added favorite drug Xanax! Without it I go insane!

Wednesday, October 15, 2008

It's Scheduled!


So we are set for Cache's surgery. He will be having it done on the 21st. The day after my birthday. I do not have a time yet but it will be in the morning. All I know is that we are the 2nd heart case for that day and they start at six. He has a few appointments before hand so we can get him prepared. We will be up at Primary's all day Monday getting all sorts of test done. I am sure this will be one of the most trying weeks of my life. I think at this point I am so sick worrying about it that I just want it over so we can get him better. I am scared out of my mind! They are going to have to crack his chest in able to get the leads for the defibrillator in. They say if everything goes well and "perfect" he will be in the hospital about 5 days. I expect the worst and hope for the best. I have learned that is a better way to handle things when a curve ball is thrown at you! I am sure I will be at the hospital by his side the whole time and will not leave till he is coming with me! Thank you to everyone for all your kind thoughts and prayers as it helps us get through this crazy hard time! I know God is telling me that things will work out and that this is for the best, but it is so hard to understand. I am sure he will be with Little Cachers the whole way!



Monday, October 13, 2008

My Birthday Present... Or Was It?



So Eric tried really hard to surprise me for my birthday! I can read him like a book! When he asked for me to make sure I had a weekend off I had my thoughts! Of course I was right! He did throw me for a loop when he told me New York and I kind of got mad! I didn't want to go to New York for the first time with only 2 days! Then he tried to be funny! Tease me! Well I told him do you want me to guess? Go ahead and try he told me. It took one quick search for the Tampa Bay Buccaneers schedule to see where they were playing. When I told him Denver he looked dumb founded. I told you!! I am smart! He could not believe I figured it out! Although I was very excited and I had never been to a Pro Football game, I think he was a little more excited! I love football but I haven't been able to follow it as much this year! Kind of a bummer! Well to say the least we had fun! It was are first time to Denver and I totally expected to be like Utah but it wasn't. It was a nice city despite the bums. They didn't bother you for money they were just there. Saturday I took a nap for about 2 hours as soon as we got there! I was so tired from all the stress and had not sleeped! It was nice. Then we hit the city, went to dinner, and ran into a Burlesque show. It was sooo funny! We had such a good time! We woke up the next day in full Tampa gear and hit the game! It was so cool to see the players that close! We had awesome seats. We were on the 12 yard line 6 rows up on the Tampa side. I saw all my favorites warming up out of there gear. I have to say they are huge and have the most fit bodies I have ever seen! Although we lost it was still fun and the Denver fans took it easy on us. They were very fun, nice, and respectful. We did however get a few glares when we got overly excited though! That night we bought some pizza took it back to the room ate, hung out, and just sleeped. Which can be nice without kids! Erics mom helped pay for the tickets for my birthday... So thanks mom! It was nice to get away!

Some freaky china doll in a "Denver" shop? Go figure they must have a large Asian community!


My honey and I at the show! Photography by ourselves!


The Burlesque Girls!


The "sexy" host and myself!


If front of that dang Denver Bronco Horse!


Getting to our seats... they were awesome!


Warm ups! Trueblood... he is huge!!!!!


Garcia... he must have know Griese was getting hurt!


The best defence in the league huddling!


Who's my favorite player Mr. Derk Brooks!- this is a song on a commercial for those who don't watch football!


The team huddle before kick off!


The owner! He is bigger in person! I always thought he was a short Irish dude! That is his wife and kids by him!

Things not to be forgotten...

So I have a few things I wanted to blog about but I have been sidetracked with everything. Now the tricky part is remembering everything...

Mason was Kinderbug a few weeks ago. Which was super fun! The teacher gives you a list of things you do each day so this is how is went down. Monday we took in a very cute poster of pictures of him and his family. With a list of a few of his favorite things which included, pizza, soccer, cheeseburgers, xbox, and of course his family. Mason always says to everyone "I love my family!" It makes me smile every time! Tuesday Mason was so sick and had to miss which was the day you bring your pet in. It was also Green day and he was so upset me missed. Wednesday was your favorite book. He took Fish Out of Water, a Dr. Seuss book. Thursday was bring your favorite treat or food so of course we got 2 cheese pizzas from Little Cesar's. Friday was tell something special about your family. So Cache came with us to school and we told them all about him being deaf and taught them a few sings. It was so much fun! Mason always asks if Dylann can come to class now! The other day Mason asked how babies get in the belly. I was caught of guard and really didn't know what to tell him. So I said God puts them there, and of course a follow up question "How?". It's magic! Mom there is no such thing as magic! That's where I changed the subject! I need to come with a better explanation!



York won his first soccer game today! He was so happy he called me at work to tell me! I wish I could have been there. His dad said he played awesome! One reason I hate my job! I am a total soccer mom! I love to watch yell and cheer! I can't help it! I have a passion for them game since I used to play!




Dylann is getting so funny with all her talking. She is so sassy! Where did she get that from? She now tells you no! I will be like ok time for night night and her hand will go up and say noooo! In a very sassy tone too! I love her! It is so much fun having a girl! She loves her dolls too now. She takes them every where and they are called "babies". She also says "so cute" like "so toot". When we took Cache to the doctor the other day she let him carry the boy twin and she got the girl twin. It was cute and yes I let my son play with dolls!



Cache besides the obvious now says and signs uh-oh. It is funny! I love it! I swear the other day he said his version of I love you while getting on his bus for school which sounds sort of like "ahhh-uuuuu" in a yelling tone. Still super cute and almost made me cry! Probably was just him yelling, but I can pretend! LOL!



I am sure there is a million things I should have posted but didn't so that is all I can remember!

Thursday, October 2, 2008

The One Thing That Could Make Me Cry



So it's been a long week! I mean long! My job sucks, Eric has put in crazy hours, I only got to workout once this week, oh my job sucks, I have got nothing accomplished this week, I am going to miss Yorks game tomorrow, and my job sucks!



But today everything has been put into perspective. All those things above seriously do not matter. Ok Yorks game does, but you get what I am saying. Today was the most trying day I have had in 3 years. Yes 3 seems to be the magic number. Let see... Cache is my 3rd child, he had his pacemaker placed on his 3rd day of life, and now he is 3 years old.

Cache went for his pacer check today and what I wanted to be a quick get this over turned into a all day event. I was stressed because I had to take all the kids by myself, and these doctor appointments are not easy ones. They have to do all sorts of tests and it is long. My kids were out of control and wanting to leave by the time the doctor got into the room. That's when I got the worst news I have had in 3 years. Cache has had an arrhythmia. It happened on July 1st. I remember this day clearly because Cache and I visited the hospital this day. Cache had came in from the backyard screaming and signing that his head hurt. It looked like he hit it but he always does so I got him a bottle to calm him. I took him down stairs and turned on the tv. Not but 5 minutes later York found Cache lying on the stairs looking like he was sick. So York picked him up and he vomited. My first reaction was that he had a concussion. So off we went. Apparently it was not a concussion. Today we found out Cache had an arrhythmia and is a very blessed boy to have had his heart start back in sinus. I was a little on the shocked side when she told me. I don't know if Cache had his meds that morning and if he did he probably just had it. Then came the big hard to swallow news. We need to place a defibrillator. So we are looking at a trip to Primary's ICU within the next week or so.

I knew this day would come. I would have to face another surgery. I just thought I had a few years. Although the surgery scares the crap out of me, that is not what frightens me the most. What scares me is the fact that he could have died. I could have lost him on July 1st, 2008. It is a thought that just sits in the back of my mind all the time, but I try to think logical. Here is my reality check! I am a mom with a child who has Pro Long QT and there is nothing you can do. You can't fix him or make him better. You just have to hope that you are the lucky one who gets to see there child grow-up to be that great man you know he will be. I see kids die everyday at work and I never want to be those parents. I can't imagine the pain they go through. Every time I hear about a child that dies, I never forget it. I always have this thought that it could have been me. All I can do is sit here and hope and pray that he will be ok. It is a horrible feeling! I wish there was something that could be done to just make it go away. To fix him. For now, I guess will go with the hoping and praying.



I know you most of you know the love a mother has with there child, and with each child it is different. I love all my kids for different reasons. Cache is the one I admire, the one I want to be like. Nothing stops that kid. He is determined, challenging, brave, smart, enduring, caring, and can turn a frown up side down by a look. He is an amazing child. I have learned so much from him. He is my life lessons and has taught me so much more then any text book could.

I love you Cache with all my heart and I will be there for you every step of your life. You will never ever be alone. I will fight right along side of you!

Wednesday, October 1, 2008

What Would You Do?

Mind you I do not like Cache's teacher! I try really hard but it is difficult! So there is a little note book that goes back and forth from home to school. We use this to write notes on anything we may need to communicate with one another. Well apparently she felt the need to let me know that my kid was whinny today! That's right, whinny. This was the exact statement. "Cache was really whinny today!" Wow a 3 year old was whinny? I always thought they were angels! So I want to write something really witty in the book back like... Wow a 3 year old was whinny! That is just crazy! Or maybe... sounds like your the one whining... Maybe you should have picked a different profession! Like seriously! When he woke up this morning I though maybe you will whinny at school, you should stay home! WHAT THE HELL posses you to tell a parent this? Even if you were thinking it! So what would you do?