Update

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.

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.

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.

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.

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.

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

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.

Unbelievable (Long)

So today is day 6. Last week the doctors were saying unless he makes a miraculous turn around he would be going home the middle to end of next week. If he were to make a miraculous turn around he could potentially go home on Monday. Well we are looking at going home tomorrow. I can't believe it. He has turned around soooo fast it is really scary. The way this month has been going I'm just waiting for another bomb to drop. I am staying positive but it's just getting so much better so fast it is scary.

Yesterday they took out the chest tube that they placed the night he came out of surgery. He did really well with it and hasn't had any breathing problems yet. He is still off oxygen and sats are good. His nurse yesterday was a very proactive nurse. She got him up and walking. I was soo thrilled. He walked four times yesterday and each time got better cause he got a chest tube out. By the end of the day he took his get well soon balloon and was bouncing it along the way. He was making quick movements it was scaring me. The only thing about him feeling better is that now he is going to be running more and if anyone knows Cyrus it is really hard to keep him down when he is feeling good. So here's to hoping we can keep him active but not too active.

I don't think he got enough sleep last night. He is really tired and grumpy this morning. I had to force him to get out of bed today and eat breakfast. He has to eat and drink because he is getting meds by mouth now and if he doesn't have anything on his belly he will feel yucky. He needed to take a walk this morning and was so not in the mood. I had to make him and just when we were about to walk out the surgeon came in. Now he has had these wires in his chest, tiny ones that were basically laying on his heart on the inside. If his heart were to ever go into a rhythm that wasn't good they could hook these wires up to a pacer/defibrillator and give his heart a shock. Ever since the second night when he had the bad rhythm he hasn't had any since so they just came in a pulled those wires out. It hurt a little but he did soooo good. He really is a brave, strong kid. The doctors just did rounds and they turned off the medication that is helping his heart to pump and they are weaning down the Lasix. His chest x-ray this morning looked great and he will get an ECHO in the morning to check the function. It is possible we could go home tomorrow or we could go home on Tuesday. We are hoping it's tomorrow. Travis has been out of work for almost three weeks taking care of me and the boys before and during my surgery. I have been out of work for almost three weeks now too. I had enough PTO before I had to have my surgery to stay out of work with Cyrus but now that I had to have surgery I have now ran out of hours. Money is definitely going to be tight.

I have a doctors appt on Tuesday and I'm not sure if he is going to clear me to go back to work or not. I feel ok. I do have pain sometimes and they incisions are healing. I don't know if they are healing right but they are healing. One of the nurses here looked at them for me one day cause I was rubbing my belly and she said they looked ok but I really should go get them checked out.

So I'm here now with the monster. He is going to take a much needed nap. Maybe he won't be so grumpy and want to go on a walk later. He looks so good standing up there when he is in a good mood.

I really want to thank everyone from the bottom of my heart for all the prayers and comments and support that has been shown. I have gotten everyone of them and even though I might not have commented back everyone has touched me. I have to thank my family and friends to calling and checking in and the ones that have come up to see us really really thank you.

On a side note, yesterday Cyrus's dad drove up to sit with him so I got an afternoon off. :)
I thought about him the whole time and couldn't help but be depressed leaving. I know he was fine but I wasn't there to tend to him so it was kinda hard. Trav's parents drove up and they took us to the mall. Clinque at Macy's was having some sale if you bought something for 20 bucks you got the bag with all kinds of goodies in it. Travis's Mom was like lets get something. The clerk was like what kind of product would you like. I don't buy makeup at the mall so I was dumbfounded. She was like how about we try one. Ok sure why not. She sits me in the chair and says you look like you need a pick me up you have really bad circles under your eyes. I wanted to say no really you don't say. I didn't say that but Travis's mom went on to tell her about Cyrus and how I had been at bedside for the week. The clerk says oh we are so giving you a pick me up. So here I am in sweats and looking as scrubby as can be and this clinique clerk is doing my makeup. I did feel better after. I don't know why maybe because I realized what I really looked like and knew I needed to cheer up a bit. Cyrus is going really fast int the right direction and I should be grateful. We found an old navy and I got some cheap pants for Cyrus to wear walking around, we had an nice lunch and came back to the hospital refreshed and ready to take on the night.

Update (Long)

It has been two days now and soo much has happened. I haven't been able to update as much as I would have liked to but you know how it goes.

So Day 1 was an up and down day...
I updated about the chest tube and all that. Toward the end of the day he looked much better and I was able to go back to the hotel and get a much needed nights sleep. This morning we came in and he had a little bit of his sense of humor. He poked Travis on the nose and tried to bite his finger so he had a little bit of a sense of humor. That went away pretty fast. He has just had a rough day. The nurses have been telling me that day 2 is the worst so I keep trying to remember that. He still has the two chest tubes and only one is draining fluid so that is good. His chest x-ray this morning showed some improvement in the top of his lungs but the bottom still has quite a bit of fluid. He has a congested cough and of course is hurts to cough so we have to encourage him and make him hug the pillow. He is currently on two different pain medications, one scheduled and one when he needs it. The one that is when he needs it he doesn't like the way it makes him feel so he didn't want to take it. He went all day without taking it so this evening got pretty bad. He was grimacing alot without even moving so I finally talked him into taking it. He is sleeping finally so now I get a chance to update.

His oxygen is still up and down. Sometimes he will be low and then other times he doesn't even need the extra oxygen. We have been trying to roll him side to side to clear up his lungs and get him out of bed but today wasn't very productive in that area because he just felt plain blah. One goal for today was to get up and walk in the hall even if it was a few steps. We didn't quite get there. Maybe tomorrow will be a better day.

Another issue today was his blood pressure. One of the goals for today were to take out the arterial line in his wrist that was monitoring his blood pressure. Throughout the day his blood pressure has continued to go up and the doctors do not want it up because it will put added pressure to the newly sewn valves in his heart. They had to go up on the medication that keeps it down and start another one by mouth. So the arterial line is still in so they can monitor that closer. One of the side effects of that is flushing and headaches, well he has them both. They also changed to lasix that he was getting to another diuretic in hopes of getting more fluid off of his lungs.

He was supposed to try to get to solid foods today but he only got to some Gatorade today, which is ok but again not one of the goals that was set for today. I know that he isn't going to meet the goals for everyday but today was just a rough one. I can't take the pain away and that is hard. Another things that is getting to me is that he is the kid that stubs his toe or cuts his foot and keeps running. He can't do that so it seemed like he was just a little sad today.

I think I have covered just about everything and if it seems choppy I apologize because that is how my brain is feeling right now, choppy.

I have absolutely no complaints with the care he has gotten so far. They haven't made me feel like I was too much or like they didn't care. Most of the time they have been concerned with something that I didn't even notice or think to notice. I am DEFINITELY NOT a peds person. They like the fact that I try and help and that I want to be involved. So as far as his care goes I wish I could buy them all cookies and cupcakes.

On a couple of side notes...I am doing pretty good. Only a little bit of discomfort in my belly but nothing that is too much. I am supposed to go to the dr to get cleared to do more stuff like drive but don't think I will be able to make it because my appt is on Tuesday and according to the doctors we probably won't be home until the middle to the end of next week. We appreciate all the love and support that has been shown so far and we ask for your continued prayers.

{UPDATE}...around 8 o'clock tonight Cyrus woke up from his nap and was bright eyed and was his old cute self..a little meek but he was joking and playing with Travis. Sometimes I think he likes him better. LOL. He was up for about 2 hours he ate a couple spoonfuls of chicken noodle soup and got in the chair. He did some deep breathing and coughing and then we put him back to bed. I'm writing this now at 10:30. The nurse just drew another blood gas and he has to have potassium replaced and his oxygen is still a little low but within the parameters that the doctors want. I'm still debating about staying here tonight or going back to the hotel.

BIG DAY

So last night we went to get ice cream and on the way passed by a gamestop. Anyone who has a little boy and can pass by a gamestop without being asked to go in I commend you. LOL. Well I had told Cyrus that he could get a game at a game store if we could find one for being so good yesterday for his lab work. We tried to get by without him remembering but here we were at the door. So we went inside with the goal to grab a used gameboy game for a few bucks. Well Travis's parents decided that Cyrus needed a nintendo DS. So Cyrus walked out of gamestop with a new game system, game, and a carrying case. He was sooo shocked his face turned red. LOL. He went back to the hotel dying to play his new game. He went to bed talking about it and woke up this morning talking about it. I woke him up he said "OOO My DS!!!!" I said don't you want to use the restroom first. He says, "Oh Yeah." Needless to say he is definitely going to use it.




We got to the hospital this am and got registered. The pre op nurse came in and you know those people who were just made to work with peds. She was one of them. She had him laughing the entire time. Well except for IV time. She had to stick him twice and couldn't get it. She was soo upset and kept apologizing. I said it happens. She was able to call the anesthesiologist and get the ok to wait until he was under to start his line. Cyrus was very grateful. He was able to visit for awhile and then time to say his goodbyes. This was hard. I don't know if it finally hit him or if it was because he had to put down his DS. He started giving his hugs and kisses and that's when he started crying. Then of course everyone started tearing up. They all held it together for him but it was rough and just as soon as his started crying the wonderful nurse came out again and started joking with him and making him laugh. He dried it up just as soon as it started. She really was the best. They put him in a stretcher and asked the guy pushing it if he had a licence to drive it. That made him laugh again. It definitely helped to perk him up. I was able to walk with him to pre op holding and sit with him. He was only there for about 15 minutes. Enough time for the OR nurse and the anesthesiologist to come in and ask some question and then he was off. That was where I had to leave him. I was proud of myself, I didn't cry. He was sooo brave. He went back without so much as a look back. They gave me a pager kind of like you get at a restaurant so they could get in touch with me and said I should get update every hour and a half or so. We went for some breakfast and went to the waiting room. The surgeon came out and said after looking at the TEE that he had done back in July he feels that it could go either way. He would try to repair the valve and if not he would have to do the Ross Procedure where he takes the pulmonary valve and switch it for the aortic valve and put a cadaver valve in place on the pulmonary valve. He wasn't sure if post op he would keep him on the ventilator or not. I told him I was prepared for him to be on the ventilator overnight. It would definitely help with the pain control. He seemed confident but wasn't sure which way he would go. First update we got about and hour and a half after he went back was that he was asleep, they were in, and they were about to start bypass. Here is where I lost it. I have been in an open heart surgery and now I wish I had not. I know that the bypass operator is a very educated person and that makes me feel better but then the image of my baby with his chest open and on bypass popped in my head and I can't get it out. I'm kinda hoping writing about it will help. Second update we got was that he was on bypass and the surgeon was working on the repair. The OR nurse said everything looks ok so far and we would know more in a little while. So we wait. The staff is so very helpful and friendly and that makes things a little better. The surgery is said to take about 5 to 6 hours so I'm just trying to be patient. Thank you sooo very much for all the support that you guys have shown us. It is helping alot to know that we have that support behind us. I will continue to attempt to update on facebook and if I don't I'm sure that Ashley will. LOL.

Anyone who know Cyrus This is him....

Quick Update: The OR nurse just came out and said that he got him off Bypass and they didn't like the way the valve looked so they are going to go back on bypass and try a couple more things to see if they can get it the repair to work right. He is trying not to do the Ross procedure but time will tell. She informed me that the other surgeon in his group has been in lending a hand. I have mixed feelings about that. I'm glad that he has the back up but it makes me nervous to know that they feel like the need two surgeons. I have heard really good things about this group so I have to have faith in them. It's encouraging that they got him off of bypass. That is always a big milestone when it comes to heart patients.. It sucks that he has to go back on it because more time on it means longer time in the OR. So it's waiting a little more.

First day in St.Pete

Today we got up and started our adventure down this road. When I got up this morning I knew my body was not happy with me for doing laundry yesterday. I was more sore today than the previous days but thats what I get. Had a wonderful breakfast and started up here. Got here and registered he got his labs drawn and chest x-ray done. Let me tell you they have these Child Life Specialist what an invaluable service. The woman came in today and talked to Cyrus about his surgery. They gave him a stuffed bear and she let him go through all the motions of putting the iv's in and chest tubes. Stuff that would probably freak a kid out. He got to dress up like a dr and go on a tour of all the rooms he will see tommorrow. It really helped him out. He is such a brave little boy. He didn't cry not once. So now he's got a bag of goodies, met some new friends, and of course got new games and toys to play with. On a humorous note my best friend Ashley and her sister Trisha came to be with us. Well they misplaced thier keys. We looked all over for them and....NO KEYS. No clue where they disappeared. So her husband has to overnight her the other set..HAHA Not funny for her. I feel bad but it was kind of a little humorous after we laughed about it. Tommorow is going to be a rough day. I already know that and early. We have to report at 5:30 am and surgery is set for 7. We appreciate all the love and support we have been shown through all of this and I will try to keep this updated this week.

Trying to Normalcy

So they let me go home yesterday and from the bottom of my heart I appreciate all the well wishes and messages and prayers. They truly helped alot. I have been home since yesterday and I haven't taken any pain meds since shortly after I got home. I really dont know how people get addicted to them. All it made me do was pass out for a couple of hours and then I woke up with this sense of impending doom..Not Fun. So I haven't taken any. I'm dealing with the pain and feel like I'm actully healing faster now that I am home. Maybe it's the time when I supposed to heal faster but hey a girl can wish right. I went to Target today to get some pants to wear because all I have are jeans. LOL. So I found some nice comfortable pants for 6 bucks. Went to the school to talk to the teacher today about Cyrus in the next couple of weeks so that is all set. We leave for St.Pete on Monday for preop and surgery is Tuesday first thing. I will continue to update as much as possible and still appreciate all the prayers and well wishes that are being sent our way. We certainly need them. The way things are going I have to believe it can't get worse. I'm not totally nieve and know that it can but for my sake and well being I have to believe it won't. So I will attempt to keep this up to date for the people that want to keep up with things and again thank you soooo much.

Then again it happens

So things had been going okay. The boys stayed well, I got sick but wasn't too bad and then the other day came. I had a stomach ache that was unlike any I had ever had before. My wonderful boyfriend and best friend Ashley convinced me to go to the er. Come to find out I had appendicitis. Are you kidding me?!? So I had surgery yesterday to remove my appendix and supposedly the dr informed my friends and family that if I had waited another 24 hours it would have burst. I really do have the best family and friends. Everyone has come to the rescue and helped to take care of everything. The family that couldn't be here has been vigilantly by the phone awaiting updates. I feel truly blessed and loved. So to everyone that has sent facebook messages and called to check and sent prayers, Thank you from the bottom of my heart. To my boyfriend and best friends thank you for helping to thake care of all the stuff I can't seem to stop worrying about. I love all you guys all so much and hope to be out of here soon. The dr. says I should be ok going to St.Pete for Cyrus's surgery. T minus 7 days and counting.

Let it all come at once

So just an update on today because some of you might want to know. I got a call from the school nurse today that Cyrus had a temp of 103.5. I got to the school with Motrin in my hand. He was burning up but still himself. I called the Dr's office just cause I didn't want to take any chances with his surgery coming up in nine days. Finally got an appt for him at 5 o'clock. Because of his situation the Dr. ran every test that he could. A strept swab, an influenza A and B, and a CBC to see if his white blood cells where elevated. Mind you the entire time he had a temp of 100.5 and he was still running around the office. The Dr. came back about 5 minutes later and said he tested positive for Influenza A. I was like good grief now what. The swine flu is a mutation of influenza A but he didn't say that he had swine flu. So he put him on TamiFlu and let me tell you to get Tamiflu is a pain in the butt. After 15 pharmacies called I found 2 that I had to go to get enough for both the boys. He put Jj on it for prophylactic purposes so now I might have to keep him home too. So that was my day. Thank you for all the prayers and well wishes. It really does mean alot to us and even though I had a bad day my baby is the one suffering. He is his typical self but you can tell he doesn't feel good so he is the one suffering. I'm sure he'll be ok but this is a blow we didn't need. Again thank you so much for everyone who is sending thoughts and prayers our way.

Just had to say it.

So it's been awhile since I have updated but since the last time school has started and it's in full swing. I don't remember nearly as many rules on the parents as well as the kids when I went to school but maybe that is the behind the scenes that you don't see as a kid. I can't get in to talk to the teacher in the morning and if you leave a voicemail you don't usually hear back. JJ is jumping into 4th grade like he has been ready for it forever. He already has his first project a commercial for a planet. It's kinda fun we built a hotel out of legos today and are goiing to take pictures of it. Kinda fun playin with legos again. Cyrus has managed to lose 2 lunch boxes, bring them home, not bring home any homework, oh and slice his foot open and get stiches. That is the latest saga. He managed to slice his foot open right under his toe where your foot moves constantly. Had to take him to the er and he got 6 stitches. He was sooo brave. The only time he cried was when they injected the lidocaine. I would cry too if I was getting a needle stuck in the bottom of my foot. So then he couldn't do recess or PE. Well instead of finding something for him to do inside they still put him on the playground and tell him just not to play. Ok if anyone know Cyrus you can't do that. He doesn't know how to not play. Especially when every kid around him is running wild. So he has this post op boot that he has to wear and of course it gets dirty cause they cant get it through thier head that he can't be outside. UGGGG. So fast forward to today I take him to the pediatrician to get the stiches out and the Dr. was horrible. She was digging around so bad that he cried the entire time. Now he is a tough cookie but this was just miserable. I couldv'e done a better job here at the house but I wanted to do it right. So it looks like she managed to open back up and she puts steristrips on it. It hurts now and it didn't before. So he has to keep the boot on for another week. Hopefully I can keep it clean so it doesn't get infected. I called the surgeon's office today ,which I wish the pediatrician's office was a tenth as nice as this office was, just to let them know about the stitches. They said it shouldn't be a problem but would let me know tommorrow if it was. The date is still set. We have the hotels reserved and the insurance taken care of. Now all I do is sit here and wait. It is hard sometimes because all I can do is sit here and think and that doesn't do well for my mental health which isn't good to begin with. LOL. I'm sure it will all be behind us soon and he will be fine. It's hard when you work in healthcare and see the complications that do happen. You know those complications that have like a 2% chance of happening. I take care of those people so it's hard to not think about it and wonder what if. But I'm sure it will all be ok. Again thanks for all the support and prayers. We still need them.

The Date is Set

So we go to the surgeon's office today, which I may say was extremely nice and informative. Most doctors are trying to run out of the room ASAP but even with a packed office he sat and talked with us for about 45 minutes. At first he said he didn't have the dictation from the ECHO that was done with his cath. He said that the ECHO is what shows the size of the chambers of the heart. He was going to wait to schedule something till he had that until I informed him of what the doctor that performed the cath had said. He had said that the chamber is extremely enlarged which is bad becuase the heart is just like any muscle that gets worked out, except when the heart gets too big it doesnt contract like it should and doesn't pump the blood out to the body. So on that note he said that we would go ahead as if we were replacing it and if he saw anything different in the ECHO he would call and cancel, SO........the date is set. Sept 18. There are a couple of downfalls though. One is that his father's birthday is that day soo Happy Birthday Dad and the other is a long drawn out story that I will try to simplify.

Cyrus is to small for a valve replacement. The valves that are made for replacements are too big to fit his heart so he really isn't a canadite for that. He said that they have recently been repairing alot of valves to prolong the need for a full replacement until the child is big enough. So his plan is to attempt to repair it and if he cannot his last resort will be what they call a Ross Procedure. It's where they take the aortic valve is replaced with the person's own pulmonary valve. A pulmonary homograft (valve taken from a cadaver) is then used to replace the patient's own pulmonary valve. Basically they take the valve that pumps the blood from the lungs back into the heart and put it where the aortic valve is and use an artifical valve and put it where they took the pulmonary valve. I think that's about as simple as I can put it. He said that was the last resort because they are now finding years later complications with that procedure years down the road. At any case this will not be his last surgery and hopefully it isn't the worst. I am not happy with the options that are laid out but I guess those are the only ones available. He answered everyone of my questions and waited till I made sure I thought of everything I wanted to ask. He was very nice and compassionate.

Cyrus is aware that he has to have surgery but I don't know if he has really thought about it. I did tell him that he will be put asleep again and I think that helps alot that he knows that. He was being his goofy, energetic self today. He even asked the doctor if he was sure he knows what he is doing. LOL. He responded back with an equally silly answer.

The questions I asked to today were:
1) How long will the surgery take? About 5 hours

2)How long will he be intubated? He said that they keep them intubated overnight and then extubate the next day.

3)How long is the recovery time?
-He will be in the hospital 5-7 days.
- He will be able to go back to activites in about 3 weeks.
- He should be fully recovered by 2 months.

So I think I covered it all. We really do apprecitate all the prayers and thoughts that have been sent our way and we hope that you keep sending them. I will try to update more during this time and keep everyone up to date.

Finally told Cyrus

So we went out to dinner tonight for Travis's and Mine 3 year anniversary. Yeah we made it 3 years. LOL. While at dinner I thought it would be a good idea to tell Cyrus about the surgery. I told him that we have to see another Dr. so he can fix his heart for good. His response, " He is going to take my heart out of my chest!!" with a smile on his face. I said "No he isn't going to take it out." So he says, " Is he going to cut down my chest where my scar is?" Ah ha here it is. I said Yes he is but you will be put to sleep when he does it. He goes OK!! Just like that OK. I said well do you have any questions for the Dr. so we can ask him when we go. He says with the silliest look on his face, How old is the Dr? Then he laughs...Goofy Boy. That was about it. He really took it in stride. He didn't ask if it will hurt or anything. That was the extent of our conversation. So we go on Monday at 2 to talk to him and hopefully finally get some answers to the pressing questions. I have questions like When will it be done...What is the recovery time..things like that. So I will update as soon as I know.

Still house hunting...

So we went looking at more houses again. Don't know what I am going to do if one of these actually make it one day. Deal with moving and Cyrus...I guess we'll just have to see. So our realtor sent us a list of like 25 houses. I picked about 15 out of the mix and 3 of them were the only ones that didn't have issues with them. One had septic issues, a couple chinese drywall, others had offers, that kind of thing. Well then she called us and said look at these two houses ASAP. They are awesome deals. So we go to look at 5 houses. On the way to the first one, our realtor calls us and says something is up with this one we cant go today. Ok so we go to the next one. This one is really nice but small and maybe a little over priced for the area and local market. So we go to the next one, one that our realtor found that morning. Off the beaten path and an acre and a half of land. Already we are happy. We drive up this drive to this beautiful 23oo sq ft home. There were mature trees. We were soo excited. Open the door to this beautiful home, fireplace which isnt standard in Florida, turn the corner.....NO KITCHEN...HELLO... did someone forget to disclose something. The ENTIRE kitchen was GONE. Needless to say I was bummed. Continue on there are NO BATHROOMS.. It looked as if someone was really angry and pulled out all the bathroom and kithchen fixtures. All that was left was empty rooms with holes in the walls and plumbing sticking out of the walls. I MEAN NO TOILETS either. I was sooo bummed. Anyway that is the way the rest of the day went. One house didn't even have a lock box on it. Another was DEFINITELY chinese drywall. Don't know if you have ever smelled it but UUUGGGHHH. So that was another house hunting day for us. Again sitting an crossing our fingers something comes up soon.

New Update

So we are back from the hospital and the cath went ok. His site is healing well and he is getting back to his old self. LOL. I am trying to get him to calm down a little because I'm not sure exactly how bad his valve is. It must be bad enough if the Dr. wants to replace it right? So I think he is understanding that he needs to take it easy, but if you know him that is a funny concept. I haven't told him about the surgery yet. I think he is picking up on that some more work needs to be done but I don't think he realized what yet and I'm going to volunteer the information unless he asks until I have to. They say the best way to prepare them is to not volunteer too much information but to answer questions truthfully. So that's what I will try to do.

We have an appointment set to see the surgeon. It's in 2 weeks. I'm glad it's going to be fast. We'll see after that when they will schedule the surgery. We thank everyone for all the support and prayers. I know Cyrus appreciates it as well as the rest of us.

Oh so for his cath all the nurses said He was thier favorite. He got sooo many goodies it was unreal. He got a homemade blanket, homemade pillow, a rv truck, stickers, a race track, a stethoscope, and he got to keep the hospital gowns (which has Looney Toons on it). He was a trip and the nurses loved him. I don't think I can say enough good things about the nurses and staff I have come across at All Children's. They have helped to make a hard experience, not so hard.

Cath Day

So today started ok. We got here on time and the IV was probably the best ever. He didn't cry and they didn't even have to use a numbing agent. He just said "Ouch". He was sooo brave. They wheeled him back and let me go in the cath lab with him. He had his typical silly attitude and had everyone in the cath lab laughing. He knew he was going to count and started before it was time. The nurses laughed and asked how far he thinks he would make it and he said 8, the nurses said 6. He got to 4 and said I'm done, turned his head and went to sleep. I left then cause that's when they intubated him. I cried when I left. It's different seeing other people be put to sleep, but when it's your own it got to me. He was done really quick and the Dr. said that his valvle is really sluggish and leaks really bad. His ventricle is getting really large and when it gets too large it doesnt contract enough to pump the blood to his body. He wants his valve replaced before the year is out. He said if I didn't hear from a surgeon by 2 weeks to call and bother them. Right now we are waiting to go back to the hotel. He is doing well thought.

One hurdle done

So we started off late this morning. We got into St.Petersburg 5 minutes late and got the the office. I signed in and waited 20 minutes. That's when they decided to tell me I was at the wrong office. So we rushed over to the other side of St.Pete and showed up at the right office 30 minutes late. They were ok with it though and were very understanding. We went into the room they did an EKG, took his blood pressure, and took us to another room where the Cath lab nurse was. She went over the procedures and rules and lukily he didn't need to have any labs drawn. So we have to report to the hospital at 11:00 am and the cath will happen after that. Not quite sure what time but sometime around 1 o'clock. My phone stopped working today so after the pre op appt. we drove the 15 miles over to Tampa to the apple store to get it fixed. YAY phone works now. I have to say the only rude thing I have come across are the drivers. The hosptial staff, the apple store, especially the hotel staff have been awesome. We tried to check in around 10 today and she was so apologetic saying she didnt have any rooms available yet. We said that was fine we would come back. She asked how many children I had, I told her I had 1 with me. She said she would have something for him when we got back. We just checked in a little while ago and she handed me the packet of papers that she had went online and printed for him to draw and activites to do. I thought that was so nice. Then we were sitting in the room and the front desk called to ask if our room was ok and everything was ok. I have never had anyone do that before. They also lowered our room rate because we are here for him to have a procedure. Anyway Thanks so much for all the prayers so far and ask that you continue to send the our way. I'm sure things will be fine and the Dr. will know as soon as the cath is over when he needs to have his valve replaced.

Cyrus in the play area at the mall in Tampa

So it starts......

So tommorrow we are going to St.Petersburg to start the process for Cyrus's Cardiac cath. We have to be at the specialist's office at 9:30 for labs and other pre-op tests. He is being pretty brave about the whole thing. He is alot like me, he wants to know what is going to happen, how it's going to happen and when. He wanted to know what the cath looked like and I had one that the Dr gave me when he was six months old, don't ask I guess he thought it would help, and I kept it. Anyway, I showed it to him and he seemed to be ok with that. They are going to look to see how soon he needs his valve replaced. On one side I wish they would just go ahead and do it and get it over with. I don't want him to go through the pain but I guess it would be better now when he doesn't remember everything. On the other hand, I don't want him to have to go through with it at all. But we have to deal with the hand we were dealt. So we will go and hopefully all goes well. I know he has lots of thoughts and prayers going out and keep them coming. We are all very thankful for that. We also know that Nolan is watching out for him and will be his guardian angel. Thank you Nolan. I will keep this updated thoughout the next couple of days. Thank you for all your prayers.

Found another One

So we went to the realtor's office today to actually sign the papers for the offer on the shot in the dark house and she said she had two new listings for us to look at. Well we went and looked at one of them and we loved it. It's off the main hustle and bustle but not too far from everything and its new. To top it off...We can afford it. YAYAYAY. So we put an offer on it but not getting our hopes up because it is a hot property. Well see. So we have two offers out now. Well see if any of them pan out.

More Houses!!!!!

So we got the full story from our realtor today about the house we wanted. The owner is a elderly woman who before now has had her wits about her but the death of her daughter has thrown her over and she is now not with all that is going on pshycologically. So the son feels guilty about selling the house out from under his mother hoping that she will come back around. So he decided to take the house off the market for a couple of months. Sooo back we go. WE haven't even had the chance to hear about a counter offer. As soon as we make the offer something comes up and they take the house off the market. So we went back to one of the houses that we really liked before and decided to put in an offer. The only problem is it's out of our price range but it is a foreclosure. So we are throwing out a shot in the dark and dreaming big. So that is our house story for now. We hope to hear something soon but are not getting out hopes up. Thanks for all the housing vibes though. WE really do appreciate it.

Well back to the drawing board.

We got a call from our realtor today. She heard from the seller's realtor that the lady that owns the house is not competent to sign the papers and I supposed they didn't get all the legal papers done to make her son the power of attorney so now they are taking it off the market for a few months. So now here we are back at the drawing board again. It seems like every time we find a place the bank,seller, whatever decides oh something is wrong now after a year on the market and we need to take the house off. My lease is up in August so I wouldn't be in such a hurry but I don't want to have to fork out a bunch of money to break if we hopefully find something in the next six month. So here's to hoping.

Going to the Park

So today I thought I would take the boys to the park and try to take some pictures with our new camera. It's so hot outside it's so hard to stay out there for long, but we'll try. I'll post some pics later.

We are supposed to hear about the house today or tommorrow(hopefully today). We went to Home Depot yesterday and found carpet, paint, and tile for a house we haven't even got approval on. I know we are nuts. But we are just dreamers.

Been A While

So it's been awhile since I posted. My best friend recently lost her beautiful baby boy, Nolan Michael...We Love You Nolan....I have been doing what I can to help with the situation. Nothing you do or say can take the pain away but I hope just one thing I can do can help to ease the pain a little. My boys have been soo great throughout this whole thing. They were very sympathetic and my oldest JJ was so upset. But I told him Nolan was with Jesus now and he didn't have to worry.

My boys made a sign for Nolan.

On a positive note we put an offer on two houses this past week. One house is HUGE. It's in a gated community and the HOA fee is crazy high. It's also right when you come into the gate so drive into gate and it's right there. So we didn't like that. It's also way out of our price range but our realtory put an offer in within our price range, so we aren't to positive on that one.

The second house is more within our price range and it's alot smaller but not so hard to clean. It's already updated with fixtures and paint colors. It has an awesome back yard that backs up to some woods. So we are supposed to hear something Monday. Wish us luck.

The front of the second house complete with the back of Cyrus's head.

We still plan on going to St.Pete for Cyrus's Heart cath. He is doing good right now. We will see what they say when we get there.

Happy Birthday Cyrus

So today my baby boy turned 8 years old. OMG where does the time go. After many attempts to try to have his party this past weekend I just decided to do it tonight at Chuck E. Cheese. Our's is nothing like when we grew up with all the tunnels to play in and run through. It just has about 2 feet of tubing and the rest of the building is full of arcade games. Luckily the tokens aren't that expensive. We has a blast and for once I didn't have to work during a party. LOL. It turned out awesome.

On a side note, my dad started back driving a semi truck cross country and just so happened he was in the area today. So he got to come to his birthday party for the first time ever. Here's to hoping that the rest of the year goes well.

My Mother's Day

So my Mother's Day consisted of sleeping half the day because I had to work that night. The boys came in every hour and said "Happy Mother's Day" in a harmonious sound. Then they finally asked if I wanted my present I said Of course. JJ my oldest made a little purse looking thing at school and when you look inside it had coupons for chores that he could do for me. Then he says "They never expire Mom." Ahhhh I just had to get up. Of course after that all they wanted to do was play the WII. LOL. All in all I had a good Mommy's Day and hope everyone else did too.

We were supposed to hear about the house today but of course like with most things No response. So now we have to just sit and wait. Hope it goes quick.

Appt Scheduled

So I was sitting there thinking today. When I took Cyrus to his appointment last week the office gave me the number for the scheduling person. I was thinking am I supposed to call her or is she supposed to call me. Well I called her and low and behold I was on her list of people to call today. So she says the earliest available appt for a cath is JULY 29!!!! Can you believe that?!? Three months away!!! I was bummed to say the least. Now I get to sit and worry for another 3 months and answer questions for 3 more months. But I guess it's not emergent so he isn't to the point where they are worried tooo much. On a good note she said she would put me on the cancelation notice. So if someone gets cancelled they will call me. So now I guess I can try to get on with things and plan life. LOL. Here's to hoping the next 3 months goes quickly.

How My Day Went

So I couldn't sleep last night and fell asleep at 3:30 then had to get up at 6AM. We started driving and got there like one hour early(stupid rush hour traffic lol). We saw the Dr and he says why should we be concerned? I felt like I was back in school and just had a pop quiz. LOL. Luckly I knew the answer. He said we don't like to wait till a kid is symptomatic cause usually that means we have waited too long. Then he says it's time to do the cath. I already knew they were going to do that but just hearing him say it sounded much more real. Anyway I asked if they still put them to sleep and he said yes they sedate them and intubate them. He said it's easier because there is an anthesthesiologist there to manage the patient and he can concentrate on his heart. Fine with me. I knew that they could possibly balloon his valve and I asked him about this. He said he wasnt a canadate and that we are probably looking at a replacement. So now we are waiting again for another phone call. He said that they could possibly get this all fixed up in the next couple of months. I had a look on my face, he was like what. I said I just want to get it over with. He said he could possible fit me into a cancelation. So like I said waiting by the phone again.

We go tommorrow

So we go to All Children's Hospital tomorrow. We have to get up at 6 AM and drive to St.Pete. It's only 1 1/2 away but it will be a long ride. So keep us in your prayers. It's only a consult and then they will schedule his cath at a later date. We will keep you up to date on the details.

Appt. time change.

So I got a call last week that the Dr. who is supposed to be seeing Cyrus is going to be in a procedure at the time of his appt. so we had to change it to 9:45 in the AM. Not soo bad but that means I had to take 2 days off of work instead of one. Well I made to where I have seven days off IN A ROW.... WOOOHOOO!!! Things still look good and we are going tob be heading up at 6AM on Friday. Wish us LUCK.

So we had Easter today...alot of drama but we had a great time and the boys said they had the best Easter ever sooooo I guess all is well. We went to Trav's parents house and the boys had a long time to swim outside and then hunt Easter Eggs. Thanks to Trav's Dad they all got a little money. Then we went to a friend's house and they had great food, great friends, and the boys again got to swim with a bunch of kids and then hunt MORE Easter Eggs. They made out like bandits. The parents also got to hunt eggs with lottery tickets and money. OOOO I didn't win anything and when that black snake came out it was time for me to be done with the hunting. LOL. Cyrus decided that he wanted to do belly flops in the pool except they turned into chest flops. Of course the paranoid Mom I am made him stop. I told him that's the last thing we need right now. LOL. Anyway Happy EAster to All.

Background on Cyrus

Alot of people know that Cyrus has a bad heart, well a bad valve. He had problems with his heart when he was born and he had surgery when he was 1 week old. Among other things he biggest issue was he aortic valve. That is the valve that carries the blood from your heart to the rest of your body. His was hard and thick and didnt move the blood right. The surgeon was able to thin is out and get it moving better so he didn't have to replace it. Then when he was 6 months old the Dr. did a cardiac cath on him where they send a catheter into his heart and blow up a balloon in that valve to open it up better. He had a another cath at 3 years old but they just went in and looked. Now he will be 8 years old in May and we have been following with a cardiologist every 6 months. This last appt. he said that the numbers are looking a little bit worse so he wants to send him for another cath. So now we have an appt with a Dr. at All Children's Hospital in St. Petersburg to meet with him and schedule another cath. I think theworse part about it apart for my 7 year old having to go through a procedure, is what to tell him. The last time he went he was 3 so there wasn't much to say. Now he understands and remembers a heck of alot more. He is a tough kid. Anyone who knows him knows that. I think God made him that way for a reason, so he would be tough enough to go through all this. He will eventually need to have that valve replaced but the later the better because the valves they can put in him won't grow with him and he will have to have them replaced alot more often. Keep us in your prayers that this will be uneventful.

Getting on the Blog Train

I decided I could get on the blog train and get with the program. LOL. Well mainly to get everyone up to date on our status and to keep everyone up to date on the boys. Things are going ok and I'm looking forward to trying this out.