WE ARE HOME!!!!!!!!!!!!!

Yesterday was a very busy day. First thing in the morning at about 7, Garets nurse came in with his first set of meds for the day. Since we were planning on going home she was explaining everything about each med and if there were any other meds that had to be taken first and things like that. The doctors made there rounds and the main transplant nurse came in and told me that she has send all of his prescriptions down to the pharmacy in the hospital so we could make sure they had everything we needed to go home. Those were ready to be picked up right around 11. During the time that we were waiting , we got the room all packed up. It is amazing how much stuff you can accumulate in 4 weeks. It does not seem like that much when you are bringing it up one grocery bag at a time. But you sure find out how much stuff it is when you have to take it all down to the car. Thank goodness we had already gone over to the Ronald McDonald house the night before and got most of the stuff over there all packed. Matt took a full car load home Monday night when we went home. When I got back from picking up Garets meds his nurse was taking out his last pick line in his arm. Our baby is now fully wireless. The nurse went over all the meds and made sure we had everything that we needed before we could sign the discharge paper and go home. About 1:30 we were walking our of the hospital and getting into our car.

Once we got home it was time to eat and take some medicine. As soon as Garet ate he took a little nap. It was perfect timing since we had so much stuff that had to be put away. It was very nice to be home and have a home cooked meal. Our day ended with Garet going to sleep in his own bed and we were able to do the same. We will still be visiting Gainesville each week for a while. Every Thursday we have a clinic visit with the Cardiologist. Garets heart is still not working the way it should but he is stable on his meds and we just have to make sure that we keep the doses increasing as he grows. Right now it is up to God and Garet as to what will happen next. Our hope is that he continues to get stronger and stay stable.Hopefully we can improve this problem with medicine. He is still on the transplant list and that may still be a factor as time goes on. The longer he is on the list the better his chances are if he does need to get a heart. For now we just have to try to prevent any other kind of sickness. Cold and Flues will effect him so much worse than it would with a healthy baby. Now that we are home we would love for you all to come and visit. When you do come to visit please help us help Garet. Hand washing for anyone that comes around and constant sanitizing of everything around the house is so important. It is now our job to make sure that we stay as healthy as possible. In doing this we can keep him healthy as well so that his heart can get stronger. In the next week or so we will be taking a infant CPR coarse in Jacksonville. If anyone is interested in taking it with us to get there certification we would love for you to join us. I am not sure what day it will be on but I will keep you all posted or you can email me with the information.

Look how big I am getting. This is one of my favorite shirts. It says "little body BIG heart"

Looks like we are going home.

Well it does not look like we will be going home Wednesday. It looks like we are going to be going home Tomorrow. My mom just called and said that the doctors came in and said that we can go home tomorrow. We have a busy day ahead of us, but very exciting. The hospital is going to send us home with a month worth of prescription for Garet and that way we do not have to worry about the pharmacy not having something once we get home. We also have to sign up to take a infant CPR class. Tonight we have to get everything over at the Ronald McDonald house all packed and cleaned up and also everything that we have brought to the hospital over the past weeks. I am sure they are going to have a lot of things that they have to show us before we can leave and I am not sure what all they are going to send us home with. They may send us home with a traveling heart monitor or something like that. If they do that I am sure we will have to learn how to work that as well. I will most likely not be able to post anything tomorrow but I will try to get to work a little early so I can do a post before I have to start working on Wednesday. Thank you so much for all the prayers and thought they have really been helping and now we get to go home. We can not wait to see you all.

Very nice weekend

I took a little break from the blog page this weekend. I am sorry to those of you that have been checking it every day. Not much new happened over the weekend. Things are going nice and smooth right now. We had to change the time and amounts of medicine that Garet was getting at one time. They had him scheduled to get his medicine 2 times a day. Once in the morning and once right before bed. That was fine except they had him taking all 7 meds at once two different times a day. Well those times just happen to fall right near the time he was eating. His poor little tummy couple not hold a normal feeding plus all the different meds that he needed to take. We had a few time that everything came back up. This is when we had to talk to the nurse about spacing them out a little bit. I think we have it worked out now. He now takes half at one time and then the other half about an hour later. That seems to be working better. The nurse said that the times that he takes the meds is not as important as the fact that he takes it all and keeps it down.

We aredo not want to get to excited but it is hard not to. Right now it looks like we might be getting to go home on Wed some time. Things have been going well and the doctors are very impressed with how strong Garet has been. If we are lucky enough to go home on Wed we will still have to go back and forth to Gainesville at least once a week for a while. Since he will hopefully continue to grow at a fast pace, his meds will have to continually be adjusted. We are just so excited that they are even talking about us possible getting to go home. I will keep you all posted.

Good news Friday

TGIF to everyone. It is funny to know that today is Friday again. Being back to work I can keep track of my days again. Well we got some good news from the doctors on this fine Friday. It looks like when they looked at the ECO yesterday that his function is not getting any worse. It may actually look a little better but they are still being cautious on that. They did say that it looks like his function is up around 29% and that is so close to the 30% that they told us would be some noticeable improvement. Last night was the first night that he did not have to have his pee medicine by IV. He has now taken all of his medicine by mouth two time. He really did not mind taking his medicine by mouth when he was only taking one or two. But now when they walk in our room at 9 at night with a ziplock bag full of meds it is not quite as good. They have him on 6 different meds for all sorts of different stuff. It us about a good 30 minutes to get him to take all of them. There are a couple that must taste good because he sucks those down. There are how ever a couple that must be just horrible. He makes the worse faces when he takes those. We normally get about half way threw his meds and then he decides that enough is enough and start to throw a fit. We just tell him how much better he is going to get if he keeps taking his medicine like a big boy. You know since he is 2 month old he understands everything that we tell him and just says ok mommy and daddy I will take all my medicine and not throw a fit. HAHAHAHA. He is so grown up already.

If he continues to do good taking his medicine and continues eating it looks like they are trying to shoot for middle of next week some time to try to come home. That will be so great to have him home and be able to start to function as a family again. They have not told us how often we are going to have to be back to the hospital for followup visits. I am sure at first it will be quite a bit. That is just fine with me. Well that is our happy Friday news. Thank you again for all the prayer and please keep them coming so we can get home and Garet can keep growing up big and strong.

No move IV meds

Today Garet has officially been taken off all the IV meds. He is now talking all of his meds by mouth. I think right now they have him on 6 different kinds of medicine. All of them working together seem to be doing a good job of keeping him stable. I talked to grandma Rose earlier since I am back to work, and she said that Garet has a visit from some firemen. I guess some firemen come in about 1 a week to visit the kids in the pediatric unit. They stopped in Garets room today and gave him a fireman pillow. I can not wait to take pictures of Garet and his pillow to show you all. The also came in today and did an EKG and this afternoon they came in and did an ECO (ultra sound of the heart). SO hopefully tonight some time one of the doctors will come in and let us know if anything has changed. I know tonight some time after 8 I will be trying to find a doctor to ask about the ECO. We were told when we were in the PICU that they have to read all the ECO's each by 8 at night.

Garet is doing really well with his eating. He needs to eat at least 20 ounces a day in order to get enough nutrients to maintain his current weight. Anything over 20 is good and will help him to continue to grow. The past couple of days he has been eating right around 24 or more ounces. We are now back up over 10 pounds. 10.1 pounds as of Tuesday, so we are steadily gaining weight and that is very good. I am also going to see if they will weight him tonight or in the morning so we can see how much he has gained in the past 2 days. Right now a healthy baby should be gaining an ounce a day until they hit three months and then they should slow down a little bit and be gaining a 1/2 ounce each day. That is what I have found online as a guide line. If we can stay close to those stats then that shows real growth. I don't think we will have any problem doing that. As long as he does not over eat he does not have any problems keeping his food down.

I know I have been trying to keep you all up to date on how Garet is doing but I have a hard time explaining exactly what is going on with his hear, so I found a great web site that does a great job of explaining his condition. I wanted to share that with you all. http://www.childrenscardiomyopathy.org/ is a website that will answer more questions that maybe I have not been able to answer. The condition that he has is called Pediatric Dilated Cardiomyopathy. It is a chronic heart issue and right now there is not cure for it just ways that they can help you to live with it. Please take a look if you have any questions or just want to know a little more about what is going on.

Thank you again for all the thought and prayers. It looks like Matts dad is helping to put together a bike ride here in the surrounding Jacksonville area to help with financial support. As soon as I find out more information on it I will let you all know. I believe that they are trying to plan it for some time at the end of this month. I don't think you necessarily have to have a motorcycle to participate. I think they are going to travel in between a few different places here in town and then have things going on at those places as well. So for those of us that do not have a bike, we can just go to one of the locations that they will be traveling to and have some fun there. Like I said as soon as I know anything more I will let you all know.

We got our wagon ride

We finally got our wagon ride. On Tuesday they were talking about moving us to a different floor or there was even talk about moving us back to Wolfsons hospital.We wanted to make sure before we got moved that Garet got his wagon ride. We could not find any wagons on our floor so I had to go and find one on another floor. After sanitizing it and getting blanket put in the bottom we were ready for the ride. At first Garet was not so sure what was going on, but as soon as we started to move he thought it was to cool. One of our favorite nurses (Trisha) made sure we had everything we needed. She got Garet hooked up to a portable heart monitor and off we went. Trisha was our driver and she did a very good job. We did about 3 laps around the PICU. On the first 2 laps he was smiling at everyone we would pass. By the middle of lap 3 he was fast asleep.
We really have to make sure that once we get home we get Garet a wagon. He will be able to help daddy in the yard in his wagon. He really seems to like it and that would be a fun way to get him around the yard. We will have to make sure it has some big wheels since out yard and road are mostly dirt.

Onto our move. Like I said above they were looking at moving us to another floor or maybe even back over to Wolfsons. Well we made sure they knew we wanted to stay at Shands. We felt that Garet will continue to get the best care if we stay at Shands. All the doctors know him and it did not make much sense to us to go back to Wolfsons. So we have now moved to the 4th floor. We will miss all of the friends we have made in the PICU, but we are very happy to still be at Shands. It is a step down room and hopefully our final step before getting to go home. It is hard to go from all the personal care that Garet was getting in the PICU to a normal Pediatric floor. He is still getting wonderful care we just don't see the nurses as much so we do not have that close relationship with them that we have with the nurses up in the PICU. The main Cardiologist was wanting Garet to have his own room in the ped unit but there is only 4 rooms that are private on that floor and from the sound of it they do not open up very often. No big deal. We have a little girls for a room mate. She is also a transplant patient. So they both have the same precautions that the doctors and nurses have to take. The doctors are suppose to meet some time today and try to put together a action plan and time line on how much longer we will have to be at the hospital. Please continue with all of your prayers, we would really like to be home some time in the next couple of weeks. If they could send up home with a portable heart monitor then we could be doing the same thing at home that we are doing at the hospital right now. He is doing a great job of taking all of his medicine. He is such a big boy when it comes to that. There is only one more med that they have to start having him take by mouth and that is the one that makes him pee a lot. They are still changing the doses a little bit on some of the other meds, trying to find the exact amount that will work best for his little body. Well as soon as we hear anything about when we might get to come home you all will be the first to know.

2 months old

Yesterday was Garets 2 month birthday. He had a really good day. He ate the most in one day than he has so far and I think he slept the most since he got off all the meds. It looks like they are going to try to transfer us to the 4th floor. That is the normal pediatric unit. They have some beds that are called step down beds. IMC bed (Inter medial Care Unit) They say that he is doing well but not well enough to go home yet. A couple of our favorite nurses found out they were trying to transfer us and they said that they think we should just stay on this floor until we can go home. I tend to agree with them. We have got to know so many of the nurses and some of the other patients on this floor that we would much rather stay here till we get to go home. If we get moved to the 4th floor we will have to get used to a entire new group of people. I am sure they are just as nice but we like it on the 10th floor.

Yesterday we were trying to find one of the hospital wagons so that Garet could go for a ride around the 10th floor but we could not find one up here. Today I am on a mission to find a wagon. We may have to get one from another floor and get it all sanitized before we can use it but that is our goal for today. I thought it would be nice for Garet to take a ride on his 2 month birthday but it will have to do being 2 months and 1 day.

They have not done any more EKG's in the past couple of days and they have also not done any x-rays of his chest. I guess that is good. They feel that he is doing well enough that they do not have to have that every day check. So overall things are going really well. Garet is doing so well and is working on getting himself better. We still have a long while before we can say that he will not have to have a heart transplant but we are moving in the right direction. Thank you so much for all the thoughts and prayers. As you can tell the power of God is so strong. A bible verse that comes to mind is. Were 2 or more are gathered in my name I am there. We have so many people that are coming together to pray for Garet that we know he can hear our prayers. Thank you again. It means so much to us that so many people are following Garets story. We are working on the happy ending.