Monday, August 31, 2009

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.

Monday, August 17, 2009

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.

Saturday, August 15, 2009

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.

Thursday, August 6, 2009

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.

Tuesday, August 4, 2009

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.