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.

Sunday, October 25, 2009

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.

Thursday, October 22, 2009

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.

Tuesday, October 20, 2009


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.

Monday, October 19, 2009

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.

Friday, October 16, 2009

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.

Tuesday, October 13, 2009

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.