Monday, February 23, 2009

Nick has a Surgery Date!

I can't really say today has been a long day, just full of information. Information on his heart that we didn't even know about or expect. I guess I will start with the morning and work my way up. Easier to remember everything that way.

We left the house around 10:00. Dropped the older kids clothes off at my parents since they would be spending the night there after school and taking the bus back to school from there, visited with them for awhile and then headed to Mt. Vernon to pick up our Sears pictures. They turned out pretty dark so remind me next time not to do a dark background. Other then that, they turned out great! The blue sure does POP right out in the pictures though.

I thought we would end up there a bit late but with Matt being a truck driver, he knew quick ways to get to Cardinal Glennon. Got to love truckers lol. We made it there with 15 minute early, checked Nick in and after waiting for about 10 minutes, they called us back. Nick weighed 15 lbs 5 oz just like he did last Friday but it was also on a different scale then any other times. His oxygen levels were 93 which Matt felt was way to high since they want them to be in the 80s.

Anyway, after waiting about a half hour, his surgeon came in and explained everything to us. I guess Nick has two holes in his heart instead of the one we always thought. He has the normal one that every baby is born with but normally closes after a month or two, and then he has the nickel size hole. They said if he didn't have the extra big hole that they would just keep an eye on the other one but since they will be in there to patch the big hole they are also going to patch that hole.

Ok... now I hope I can explain this all right. My lingo isn't all that great so I hope you guys understand what I'm saying. I was so thankful for his surgeon and his picture drawings because it made it so much easier to understand. Anyway... you know how one part of your heart has oxygen blood that flows to your lungs and then from your lungs it goes into the other side of your heart and then from there through out your body. Well he color coded the oxygen side with a blue pen and then the full body flow side in red. I guess that his body flow ventricle that should be attached to the red side of the heart is actually attached to the blue lung side of his heart thus bringing way to much blood flow to his lungs. What he plans on doing is taking advantage of Nicks hole and patching kind of like a tunnel to the ventricle that should be on the red side. With doing this, there is a chance that this patch might end up covering part of his blue side ventricle not giving much room for flow to the lungs. If this happens the hole that they have to cut into his heart, he will try to put a patch there and make a bigger space to allow for the flow needed to his lungs. If he is unable to do this then they are going to have to close up his lung side ventricle and put a tube (from a cows neck) in place higher up the lung side vertical, pretty much making a by pass to his upper lung ventricle. With doing this though, it is a given that Nick WILL have to have surgery in a couple years again to replace the tubing since he will be growing but the tube wont and then about every 5 to 7 years until he is an adult he will have to have surgery to replace this tube. He figures the surgery itself will last about 2 to 3 hours and that his heart will only be stopped for about 45 minutes to an hour max. He gave us all the things that could possibly happen but said that he does surgeries like this pretty often and that the children have done very well after.

Oh, I also forgot to add one more thing... The band that they put in back in October... what he plans on doing with that is cut out the section where the band was and sew the two ends together since the part that had the band I guess would stay small even with the band out. Need to update that in my blogs now that I think about it.

God... I hope I didn't loose you and that you got all this.

I asked him, since Nick has all this going on is he doing good and his surgeon said that he was doing great. He was watching him and was so surprised at how big he was and how well he was doing. He thinks very highly that Nick will be just fine after surgery.

So after the shock of hearing he has two holes instead of one and that there is a chance that he will have to have a tube in place of a ventricle that might cause more surgeries down the line... we were to pick a surgery date. His surgeon suggested waiting until sometime in April after the flu/cold season but understood totally our rush to have it done. He said that he was going on Vacation around March 16 and that it would be fine to have surgery any time after that. He said either March 25 or April 2 would work for him. Matt wanted a Thursday but we wanted the sooner of the dates so it looks like March 25 Nick will be having major open heart surgery. A day after my birthday!

So that's what went on. Matt and I made our phone calls to family and friends on the way home and talked about everything that was said in case on of us didn't understand something or whatever.

Wednesday, February 11, 2009

Nicholas Heart Cath

Everything went good with Nick yesterday. He was a happy camping and only cried 3x. Even the nurses were impressed at how well he did.

Lets see. Monday, I called Matt to let him know about Pastor Bret calling and Cardinal Glennen calling. This is when he informs me that I would have to pick him up. They didn't have a load that would get him home in time for Nicks heart cath. I quickly got a shower, pinned my hair up, packed Lilly's over night bag and out the door we were at about 1:30. We made it to Decatur at a pretty good time. Right from Decatur we headed for Olney. We were going to stop for dinner first but Matt's cousin, who was watching Lilly, said they had dinner waiting on us. I thought that was very nice of them! I'm not sure when we arrived there. Think it was around 7:00. We had dinner, visited and then their daughter Hannah who will be 11 on Lilly's birthday talked Matt into playing her Wii. He got such a work out but fell in love with it. They played this sports game I guess the system came with. Finally around 10:30 we headed for home.

Once at home, I fed Nick his last feeding and put him to bed. I finally made it to bed I think around midnight, when way to soon, the alarm went off at 3:00. I got up, showered and did my hair. The whole time Nick was awake with me. I woke Matt up around 3:45 to pack the van. 4:15 we were out the door. We made it to Cardinal Glennon at about 6:15. Matt had registered the day before while I was on my way to get him so all we had to do was let them know we were there. We waited for a nurse to come in to start working on him. He was 15 lbs 12 oz. Big weight gain from Friday at the clinic so we figure there is a BIG difference in scales. I think he is more like 15 lbs 5 oz but even that is pretty good.

After they were done checking him we were brought back to his same day surgery room, where we waited until 9:00 before they brought him back. Nick slept most of the time as did Matt and I snooze. We met with the nurse that would be taking care of him for the day, Joanne, lady that would do his anesthesia, the doctor who would be doing his Heart cath and his nurse, Donna, who we have already met a few times before and then also an intern who I figure was in the room during his procedure.

We walked him to where he was going to have his heart cath done. I handed him to Donna, who he had been flirting with the whole way there. He was all full of dimpled smiles. I had an easier time handing him over this time then I did last time but I think its because I knew he would be able to come home with me that night and they wouldn't be cutting into him. All they mainly did was stick some type of IV tube into him and shoot die up to his heart to see where all the die goes.

Once he was in the back, Matt and I went outside so he could have a smoke. This is when we made our phone calls also, that he was just brought back. We went and got some breakfast and then headed back to his room where we found there was another couple. Matt and I were kinda upset by this only for the fact that we were told we would have the room to ourselves and left our laptops and all there.

After sitting there for about 15 minutes a nurse came in and asked if we could kindly leave the room. The other parents were kind of upset that their child would be going through whatever he was having done and the child was not in a very good mood at that. I think the child was about 2 or younger. We grabbed our laptops and went into one of the waiting rooms.

After waiting there for about a half hour we get the call that Nick was in recovery and doing well. They did call us during breakfast to let us know that they had started working on him and he was just fine. A short while later his Card doctor came in and said he stepped in to see him and he was doing good. We would see him in about 2 weeks for Nicks check up and to talk to Nicks Sergent about the surgery. It wasn't much longer after that that the heart cath doctor came to get us so we could see the video of the heart cath.

It was pretty cool. We saw in video, not pictures, the hole in his heart and even the band. The hole is still the size of a nickel and is right in-between the two arteries. The band still looked very good and was doing its job of restricting the blood flow to his lungs, but was starting to get very tight. We were told before Nick even went back that there was a chance he might not have to have the surgery done until he is a bit older which I was NOT to happy about. Now there is talk it WILL be sometime in March because they have to get that band out before it gets to tight. Now I'm not sure how big everything is, but to give a simple example... his artery is say 3 inches wide, where the band is I would say there is only maybe a half inch of open space. As he grows everything else grows but the band of course doesn't. They need to get it out soon.

Anyway, we went back to our room thinking he would be there in about another 15 minutes. We were expecting the other couple would still be there or maybe just to find the room empty... NOPE! not to happen. There was another young couple in there with their 5 month old little girl. I'm not sure why they were there but I know that the father was a pain in the butt. Matt goes outside to smoke and leaves me there with them. The father who looked like he could be no more then 18 or 19 was playing this rap crap from his cell phone and singing along to it. The mother who looked like she was only 16 or 17 was asking to use the cell to call someone but he wouldn't let her. They get into a fight and she ends up using the hospital phone. All this with me sitting just feet away from them. I couldn't wait for Matt to come back. I was like, how dear he go out and smoke and leave me to deal with this couple on my own lol. Thankfully they had left before Nick came to his room and thankfully we got the room to ourselves the rest of the time. Once Nick came back to his room he was all smiles and just laying there so happily. Matt teased that he was all drugged up and sure enough they had gave him something for confer. Nick kept shaking his head no when laying there. It was so cute! I thought maybe it has something to do with the way the medication was reacting to him.

I got to feed him his first bottle of the day and after he ate he slept. He had to keep his leg down and it seemed that he could only do this when I held him. So there I sat, in one position for about 2 or 3 hours while he napped lol. I tried to snooze but couldn't. Matt was able to no problem, but that's a trucker for you lol. They can sleep anywhere lol.

We were told he would have to stay until 6 so around 4:30 we went down to get something to eat. His nurse, Joanne watched him for us and loved being able to hold him. He just talked to her the whole time. It was to cute she said. She said that she isn't supposed to get attached to the children but how could she not Nick.

When we got back to the room, she was taking him off all the monitors and taking the IV out. She was getting him ready to go home so we could leave at exactly 6:00. I called Matt who went out to smoke, that he was getting ready to go and he said he was on his way already. Right at 6 we were out the door. YAY!!! lol

The drive home was LONG. Matt was starting to get tired and we still had to go to Olney to pick up Lilly. I told Matt to pull over and I would drive since I knew the rest of the way anyway. We get to this one town (cant remember which) and come up to an accident. We had to make a detour. This was not fun. I didn't know my way and Matt wasn't sure which road to take. On top of this, it was raining out. I didn't know the roads so I was going so slow.

We finally made it to a town we knew and decided since we didn't have to pick up Lilly after all (we called them to let them know about the accident and they decided to keep her) that we would head to Effingham to look for some computer games for Matt.

Once we were at Effingham Wal-Mart Matt looked at all their games. They only have a very small limit of computer games. We looked at all the other games and decided on getting a Wii instead. He picked up a couple games and I decided to wait on the Wii fit. They were all out. I wanted to get a photo printer but that will have to wait until this weekend. I picked up a light blue shirt for Lilly, blue short for Savannah for family pictures this weekend and an Easter outfit for Nick's dedication pictures.

We made it home around 11:30 and I finally got Nick down for the night at 1:00. I crashed but not enough to where I couldn't hear him. He was up on and off through out the night. We finally got up for the day at 7:30 so I fed him then. He was so hungry. At around 9:00 he feel back to sleep so I went and laid down also. Matt went to pick up Lilly and when he got home we were still in bed sleeping. He woke us up but left Lilly sleeping on the couch. She feel asleep on the way home.

As for the older kids, they were at my parents house the whole time and are now on their way home from school. Can't wait to see them.

So, it was a pretty good LONG day. Nick is doing great and just having a blast playing on the floor with his first Hot Wheel car we bought him while out.