Thursday, December 3, 2009


So we have been home now for about 4 weeks. Things seem to be moving and there is alot going on lately. First things first, Cyrus is doing AWESOME. I think he has more energy now than he did before. Talk about a kid with ADD he is it, but I thank the God Lord above that I have him here even if he does drive me crazy sometimes. That is something I do NOT take for granted. I for one know that it can be taken away in an instant. We just had our six week check up today and he is taking him off of the Lasix (YAY) and letting him get back to going to PE and recess. He is letting me sign him up for spring baseball, he just can't play till the beginning of February which is when the season starts anyway. He is jumping and running and doing all the things hyper little boys do.

I am recovering well. I had my check up Tuesday and he says things are looking really good and my scars should fade. LOL. We have noticed a lump on my neck for awhile now and I have been wanting to get it looked at but really haven't had the time. I took the opportunity to ask him about it. He said he wanted to remove it to send it off. He thinks it's just a sebaceous gland that hasn't drained and now it's a lump. He said worse case it's a lymph node but he says that is highly unlikely. So we discussed it and since my deductibles are already met for this year we went ahead to schedule it for the 14th of this month. I just thought I would go into his office he would numb my neck and cut it out. Well I guess not so much. I have to get checked into the OR and might have to be put out completely. Hopefully not, Hopefully he can just put me to sleep for a min and cut it out. It's not really that big of a deal but better to get it done and over with and figure it out now rather than it be something serious in the long run.

We have been looking for a house since the beginning of the year. It hasn't been a pleasant experience. We finally got to the point where we got and offer acceptance from a bank. Now we are waiting for the second bank ( the house had two mortgages on it) to send a written acceptance. They have already given a verbal acceptance but that's not good enough. We have to have it in writing. We have been waiting on this for 3 weeks now. Our realtor has been all over it that the bank is probably tired of her but we don't care. This is ridiculous to be waiting this long on something that should not take more than a day to do. That is our dilemma. So now we are in limbo with our place now and are having to pay more a month because we don't want to sign another year's lease if we are moving in a month. Things are definitely busy and we cannot wait till things start to settle down.

I do want to send a warm wishes and a very MERRY CHRISTMAS to one and all this holiday season.

Friday, November 6, 2009

Update from Surgery

I should have written this last night but I was trying to keep him comfortable so I held off till this morning.

Everyone has a sac around thier heart that is called the pericardial sac. It's really thin but fluid can collect inside there and if the fluid gets big enough it can impact the heart and it's function. If there is fluid it can be drained by sticking a needle into that space and draining it. The fluid that was around Cyrus's heart was on the back side and it was too difficult to get to with the needle so the surgeon had to open and small part of the bottom of his insision and go into that sac and drain the fluid. He said it was a large blot clot that had reabsorbed fluid and had grown. He cleaned it out really good and placed a chest tube to collect any drainage that might accumulate over the next couple of days. He will probably keep the chest tube in till tommorrow at least and maybe we will be able to come home on Monday.

He did really well with going into surgery. Coming out was really hard. The awesome nurses let me stay in the room while they got him all hooked back up to the monitors and such. She let me help to keep him calm till they could get his pain medication. It was rough. He was thrashing and crying out in pain. The nurses were scrambling to get his meds because of that and you have to go through steps to be able to get the meds out of the machines. Once he got the pain meds in his system he was much more comfortable and then he even went back to his goofy self. Not so energetic but still silly. When the night shift nurse came in she introduced herself and he said "HMM your kinda cute." Seriously I died. He is such a flirt with all these nurses it's crazy. They have all seen him crazy and silly and it breaks thier heart to see him down and out. He got hugs from all the nurses. It was sweet. It's about eight in the morning now and I'm sitting here at the bedside. He is sleeping but chopped up sleep. I'm just goinig to let him rest and wait for the doctors to round. Thank you for all the prayers and thoughts and messages. They really do help. Keep them coming. We aren't home yet.

Wednesday, November 4, 2009

Update from today...

Today not a whole bunch happend but we did get a plan of action. They got the cat scan of his chest and found the fluid. I guess the doctors think that there is quite a bit of fluid on the right side of his heart. The plan is tommorrow around 11 they are going to take him to the OR and put him to sleep. They are going to attempt to use the needle to aspirate the fluid and if the fluid is too large or too thick they will make a small insiscion at the bottom of his chest cavity and drain the fluid. Depending on what kind of fluid it is will determine whether or not he will keep a chest tube in or not. I will know more tommorrow. For now he is in good spirits and starting to drive me crazy. But I am thinkful that he is here to drive me crazy. I will try to update more tommorrow. Thank you for all the prayers. Keep them coming.

Tuesday, November 3, 2009

My Bomb fell today

So everything has been going really well at home I have been waiting for a bomb to drop. My bomb came in a phone call. The cardiologist called this am right as I was about to take JJ to school. I was looking forward to dropping him off and getting back into bed before I woke up too much and couldn't go back to sleep. Tonight was supposed to be my first night back to work. Well I definitely got a wake up call. He called and wanted me to bring Cyrus back into his office as soon as possible so he could take another look at his heart. I said I was on the way. We only live about one mile to his office so I ripped Cyrus out of bed (he was still asleep), threw on some clothes that wouldn't be considered pajamas, and off we went. He started out by saying the fluid that he found yesterday was really bothering him all night and he wanted to look at it again. The here comes the Bomb....He might have to go back up to St.Pete. I looked at him and took a minute and said. OK, let's do this. He looked at it more and basically this is what it is. The fluid isnt around his lung it is around his heart. It is inoculated, in other words its like a capsule of fluid that is stuck in one spot. It isn't moving which is a good thing. The bad thing is that it's right behind his right atrium. When the blood goes back into your heart it goes into the right atrium and then goes through the rest of the body. The right atrium is alot more thinner that the other parts of the heart and if something presses on it it can cause alot of trouble. The fluid that he has is not pushing on his right atrium right now but could in the future. This is the reason for sending us back to St.Pete.

We went home, packed some suitcases, and took off down the road. We went to the same doctor's office that performed his cath procedure and walked right into his office. He did another ECHO and saw the fluid that our cardiologist had found. He sat me down and talked it over. He said that if we lived closer that he would probably let us go home and just come and see him daily and get tests down there. Well we live an hour and a half away so that really isn't an option. I told him that personally I would feel more comfortable and think it would be more suitable if they were to admit him and run all the tests to figure out where, when how and why and if nothing is to come of it then we are ok. If he were to have complications with the fluid and we were to go home the fluid is in a place where the only way to get it out is to open up his chest again, worst case senario. I would much rather cardiothoracic surgeons go in there rather than some doctor who has never opened a kids chest. All that to say he was ecstatic that I thought that way, gave me a big hug, and said that we will get everything arranged.

So here I am back at the hotel. He is in the CVICU because he is 14 days post op. He got to see all his old nurses and he liked that. He even has a favorite that he is hoping will come and see him.

He got an IV placed tonight just for precaution and he was so brave. I really am proud of him. I told him that and he was like I cried a little. I said that was ok he was still a brave little boy.

I'm going to call one more time before I try to get some sleep. Tommorrow is going to be a big day. They are going to get a cat scan to see how big the fluid is and to see if they need to go in a take it out. I'm really staying positive that it is nothing and that he will be fine, but I'm also keeping worse case senario in the back of my head. Thanks everyone for all your prayers and messages. I get them and it means so much to us all. Will update again tommorrow with anything new.

Monday, November 2, 2009

Saw the Cardiologist

I called the cardiologist this morning to ask if it would be okay to give hims something different for pain because he is having these headaches that just don't go away. He suggested to try some Advil. Then later on in the day the office called and asked if I would like to come in today instead of Wednesday for the follow up. Heck yeah. So we went today. He did an ECHO and said the valves look great and there wasn't any leakage. He was excited to see that. Then he noticed some fluid on the ECHO on his lung. We knew he had that at the hospital but I didn't think it would still be there. Then he noticed some fluid around his heart. I didn't remember the doctors in St.Pete mentioning anything about that fluid. He looked at the discharge report from the hospital and it didn't mention anything about fluid around his heart. He said it all looks okay but he wants to keep track of it and follow up with it. So he sent us to the hospital to get a chest x-ray and wants to see him again on Thursday morning. I'm am relieved that he is looking into these things and not just letting them be. The only other thing is that everytime we go to see that doctor we have to pay the copay and it's not cheap being he is a specialist but I will pay it to make sure he is well taken care of. We'll see what he says when we go and see him on Thursday.

Meanwhile we are trying to get back into the swing of school work. Let me tell you God did not make me a teacher for a reason. I have NO patience. He is probably one of the most unmotivated kids when it comes to school that I have ever seen. I would probably be the same way too if I didn't have to do school work for 3 weeks too. So here we are trying to both get into the swing of things.

I go back to work tommorrow night for the first time in three weeks I think. LOL. It's going to be weird because I can feel that my body is still weak at sometimes. I know it's going to take awhile for it to heal I just hope that it can keep up with me.

Jj is doing great. He is trying hard to help take care of Cyrus and be the big guy as much as he can. Of course Cyrus tries and pushes his buttons as I'm sure any little brother would do.

Things are moving well around here and I can only hope that things get better as this awful year comes to a close.

Thank you to everyone for all the prayers, visits, presents, and comments. They have really meant alot and have definitely made a difficult situation easier to deal with. Thank You.

Tuesday, October 27, 2009

Home At Last

So they let us go today. It is so relaxing to finally be home. I still have to take care of him like I did in the hospital it's just way more relaxing. The best part is that my little boy is home with me where he is supposed to be. This year has taught me so much. My best friend Ashley's precious baby boy went to heaven this year. He was so perfect and sweet but Jesus wanted him back. Things like that really makes someone step back and appreciate all the blessings that they do have. For everything that we went through I do have my boys here with me. I am so thankful for that. I am so thankful for my family and friends. Ashley overcame so much to be there for me I am so proud of her. She battled watching me lose it, she battled the anticipation and even walking through the ICU with little isolettes and and tiny sick babies to come and be at my side. For that I am grateful. Her and her husband drove up a second time to come and hang out with us to break up the monotony of the whole thing.

So many people have been here. My loving boyfriend was there for it all. He really did pick up the responsibilty I am sure he never thought he would have to. He was there for every step of the way.

Again Thank you Thank you Thank you all for everything.

Update on Cyrus...He is doing great. He is now on four different meds. Two meds for blood pressure and heart, one to help take fluid off his lungs, and he has to take a baby asprin everyday. He does really good with it. The surgeon said nothing is definite or 100% but he could be good for about 20 years. Let's pray to the good Lord above that he is right. He has a follow up at his cardiologist on the 4th and he will manage him from here on out. He gets tired easy but that is to be expected. His coordination is still off. Today when we walked out of the hospital he tripped over the rug in the lobby and fell forward. Luckily he caught himself with his hands and didn't get hurt but it sure did make me heart drop into my stomach. He is moping around the house and mainly just lays here and plays his game. Hopefully he gets better and stonger as each day goes by.

I will hopefullly go to the dr soon and get cleared to go back to work. I'm not sure I really want to leave him yet. I know others will take good care of him just as others but I'm his mommy. :)

So we are sitting at the house now. Relaxing much better than we have all week long. Ashley, Chris, our friend Mike, and John came over to visit with us tonight. Ashley is cooking dinner for us and Mike brought over one of his awesome, wonderful cheesecake. We have lots of friends and we are so thankful for that and that are here for us. Thank you guys so much.

I really do thank everyone

Monday, October 26, 2009

Hard To Stay Positive

Today is starting out to be a rough day. I HAVE to stay positive but it's hard. Cyrus is having a hard day. He finally told me he justs want to go home and started crying. One of the few times he has cried. I tore me up inside but I know I HAVE to stay positive. There is a nurse here that had him on Tuesday. She has alot of energy and is sooo sweet. She could tell he was bummed and has been visiting him often today even though she isn't his nurse. We got moved from our private room today because they have a patient coming out of the OR that needs a private room. I was lucky to get a private room to begin with so I feel blessed. The only concern I have is that he is the oldest in this little alcove that they put him in. Next to him are two little tiny babies. He has a hard time sleeping as it is in his private room and he can close the door. Now he can't close the door and they are right next to him separated by a curtain. I can see him not getting any sleep tonight.

The doctors just made rounds and they did an ECHO. They still have to look at it but after they do they will make the desicion to take off the medicine that is giving his heart a little extra umph. Then tommorrow they will do another ECHO. Hopefully it will be fine. The only thing is that he is already on two medications to help his heart beat and his blood pressure is on the low side of normal so there isnt really any meds that they can give to help his heart that wont bring his blood pressure down more. It's a catch 22. I'm sure he is fine. We'll see.

So today is just a rough day. He is surrounded by these little babies with monitors going off all the time and screaming so it's a little more stressful. Hopefully the day gets better.