We did out x-rays already this morning and the Dr.s called down to the pharmacy to fill Jadens meds. The pharmacy will have the meds ready around 10:30am which is around when the Dr.s will be doing their rounds. Sal is on his way and will get here in about 45 minutes so it should all work out perfectly. So hopefully we will be at the Ronald McDonald House by 11:30 packing. Yeah!!!

Getting home will be very nice but we still have a lot of work ahead of us. Jaden needs to rebuild his strength and we will need to re-evaulate where he is at for eating as well as fine & gross motor. We then will have the trust and insecurity issues to deal with. So a lot of work ahead of us. Plus, then we have to deal with Ash & Ethan and helping them talk through and cope with this all as well as have some quality time with each of them. So after my initial 24 hour sleep I'm going to take then we'll start ;-)

As of this moment we are going home tomorrow. We will have a chest x-ray in the morning and then I am assuming they will start working on getting us ready to leave. The Dr.s will do rounds around 10:30 and at that point if nothing comes up from now until then they will have our nurse start the paperwork to send us home. Maybe we might even make it home before the kids get done with school and we can surprise them. We will see.

I wanted to thank you all from the bottom of our hearts for everything. With each one you, the different things you have done has helped our famlily get through these difficult times. So thank you very much for your comments on the blog, your emails, your phone calls, your visits to the hospital, presents for the kids and Jaden, food & snacks and most of all your prayers. It all has meant so much to all of us. Thank you, Thank you, Thank you!!!

Of course as soon as I post a new post, everything happens. We have had a very busy morning. So I already posted about the chest tubes, the next thing then was another chest x-ray and then after that we had an echo done and then we were able to pull out his last IV as well. He was not happy during any of it but did really good at being as brave as he could be considering what he has been through. They will monitor him for the rest of the day then do another chest x-ray in the morning and if everything looks good we will get to go home tomorrow.

That is it for now. Hopefully he will take a nap as soon as we get his breakfast. I almost just ordered lunch as it is basically lunch time for him but I figured that he can just eat breakfast now and have lunch in the afternoon.

Jaden just got his chest tubes taken out. That is great for many reasons. The first is they were so painful for Jaden and it was hurting his back and sholder really bad. The second is that means if all goes well today we can go home tomorrow. That would be really nice so Jaden can be comfortable in his own environment. Pulling the tubes out was extremely painful for him. Dr. Bryant, his surgeon, pulled them out personally. I asked the nurse if he did that often and she said sometimes but not a whole lot. So Jaden really got Dr. Bryant wrapped around his finger. As soon as Dr. Bryant pulled the tubes out he said "I need to leave the room for a moment." Jaden had been given morphine but it is so painful that it didn't really help. Jaden was being held down by me, his nurse, a Family Life Specialist, and another a Fellow (almost Dr.). He was screaming at the top of his lungs and you could just see the pain in his eyes and face. Sal would have probably passed out if he had been in here. Dr. Bryant felt so bad. He has so much compassion and love for children it is just strange to see because most surgeons are not this way.

As soon as the tubes were out and the openings were tied shut, Jaden was fine. He even smiled at Dr. Bryant a few minutes later when Dr. Bryant stuck his head in the door and asked Jaden if he was mad at him. Dr. Bryant came in and got Jaden's nose and Jaden poked at him like he did at the pre-op physical when we first met him.

Anyway, so everything looks good at this point and hopefully it continues to go smoothly. I am definitly not in a hurry to get out of here because I want to make sure everything is fine before we go home and find out that there are problems and have to come right back. I will let you know what the Dr.s say later on today.

Jaden is the same, very mellow and not wanting to move around at all. Sal dropped the kids off at school this morning, picked up the dogs from the kennel and brought them home and then came here to bring me lunch and see Jaden for awhile.

During rounds this morning, the Dr's said that they won't be able to pull Jaden's chest tubes out today because he still had to much output. They will see if they can take them out tomorrow but Jaden has already had quite a bit of output today so we will see. After they pull the tubes out they will do an echo the next day. So right now the earliest we could leave would be Wednesday. But I won't even hold my breath as no one can know until Jadens tubes dry up more.

Today we will just hang out and watch movies. Sal and I tried to convince Jaden to let us take him on a wagon ride in the hallways but he said no. We told him he would lay on a bunch of pillows and it would be really cozy but again he said no. We will see if he is up to it later.

We are transferring to the floor today. They are turning the pacer box off to watch Jaden on his own for the next few days. They said even if his P wave does not come back on its own they could still send him home with an EKG which we would then send the printout back in to the clinic for them to evaluate and then they would go from there.

If Jadens output stops/slows down from his chest tubes then he can maybe get them out tomorrow or Tuesday. If that goes well he could leave possibly the next day if all else is still going well. So right now things are moving right along. We asked if we could have a private room on the floor and they said they could probably get us one which would be great. Of course if it gets busy then they may move us to a room with another child.

Thank you all for your constant prayers. Obviously God has heard and answered our prayers as things overall have gone smoothly.

Today was very quite. Jaden has been doing well overall but he has been very uncomfortable when trying to have a bowel movement. They turned down his pacer to see if his heart picked up on his own but it did not. So we will still have to keep watching that. At this point I am not sure how long they might wait to decide what to do if it does not pick up on its own. We will try to ask tomorrow and see what they say.

Jadens fluid intake is still restricted to 30ml per hour which he gets mad about because he wants so much more. Other then that we are just waiting for him to come to more and be more active. He was up for a long time today just hanging out in his bed. Auntie was hanging out with him for a long time listening to his stories (half of them she couldn't really understand). Ashley sat beside his bed and held his hand while they watched a movie together. Ethan still hasn't really come to yet and just tells Jaden he loves him and then he's done.

We are having more visitors tomorrow and then Sal and the kids will go home tomorrow evening so they can get back to their normal life on Monday. It will be really quite when they leave and always sad to see them go.

That's it for tonight. Jaden is out cold because they had to put in a peripheral line in his hand and then they had to take out the central line in his neck. This was a ton of crying and pain for Jaden so he got exhausted. But he sure is tough.

Last night they brought in some beef broth for Jaden. We were supposed to stick to the 1oz. per hour but once Jaden got a hold of the bowl he wouldn't let it go and pretty much chugged it all in one sitting. I tried to get it away from him but the only way I would have been able to is if we spilled it all over him. He was not gonna give that up. So he finished it all off and then he pretty much slept the entire night. He did really well over night and only woke up a couple times saying, "I want water, lots of water." My sweet boy.

Today he has been doing well but not too happy that he gets such small amounts of water. He keeps telling us "lots of water." He is so cute. They are still watching the fluids from his chest tubes as his lungs seem to be a little collapsed. So they are wanting him to work his lungs more so we are going to try to have him blow bubbles every two hours. We'll see if he will even try.

Another thing they are watching is his "P wave." This is what reads the electrical current from his heart. The s-node is what sends an electrical current for the atrium "upper chamber" to contract, that electrical signal continues to the ventrical "lower chamber" and makes it contract. The P wave is not showing up on the monitor or EKG. It had shown one time after surgery on the EKG so they are thinking as he starts getting up and moving around more it will hopefully come back. When he got his surgery, they put in pacer wires attached to his heart for a "just in case." They are now using the Atrial wire from the pacer wires to make the s-node fire. Worse case scenario is if it does not start to fire on his own, he may have to get a pacemaker put in. They are going to turn off the pacer every so often to see if his is working on its own yet. The surgeon was just in the room and he thinks that everything will be alright and as he walked out he gave us two thumbs up. But this is just something they watching for now.

I will post pictures after we find the cord to download the pictures from the camera to the computer.

Jaden has been stable for the most part through out the day. They extibated him at 10am (took out the breathing tubes). He did fine after they did this. It is always a hard time because when kids are extibated they try to cry but not much sound comes out. They also have a strange voice which is very soft and hard to understand. Jaden has been wanting water so bad but can not have much. We were giving him little amounts which he got a little sick from and threw up a few times. He also has been having a lot of drainage out of his chest tubes which they don't like the amount so they told us we could only give Jaden 1oz. of water per hour. So I give him half of an oz. every 30 minutes. This has been very hard. He is very groggy and pretty out of it but wants to sit up and then lay right back down. So he is not exactly where they want him to be but over all is fine.

The hospital has Child Family Life Specialist here who work directly with the little patients and their families. So they took pictures of Jaden and some machines he is hooked up to and a few common areas in the hospital and sat down with Ash & Ethan and went through it all and explained how it all works. They asked the kids for questions and worked through some of their feelings. It was very nice for the kids. Ethan was acting all strange through it all because he is struggling so hard with his emotions and understanding of it all. And he still keeps going back to why Jaden's eyes weren't all the way closed while he was sleeping. My poor babies. So tonight the kids went home with grandma (thank you very much) to just get away for the night. She will come back tomorrow late morning with them.

Hopefully tonight Jaden can get some solid rest and tomorrow he won't have such a hard time dealing with it all. He is doing great though and I know you would all be so proud of him and how hard he is working.

The night went fairly well. They struggled with a good balance of sedation but still keeping his blood pressure up. They ended up giving him a blood transfusion because his Hemoglobin was really low as well as his oxygen and blood pressure. After doing this they were finally able to get him balanced so he could be comfortably sedated. I was able to sleep in the PICU room after they rearranged some of the equipment. I went to sleep around 2am once he was a lot more stable.

They got Jaden up in PICU and started to get him all situated. He has 3 chest tubes in to help with drainage of extra fluids. He has 3 IV's - one in his neck, one in his wrist and one in his foot. He had another one in his other foot but that was out and the nurse said her guess was it blew out. He is intibated, which is what helps him breath. His mouth is taped like a little fish.

Sal and I came to see him first and then everyone else took a turn. There can only be 2 people in the PICU at a time so I stayed in the whole time and Sal sent everyone in one by one. It is very hard to see Jaden like this and everyone deals very differently. Ashley handled it pretty well and when she left she had told Jaden she loved him. Of course he is still heavily sedated so he is non-responsive but she said it anyway. Ethan had a pretty hard time. In fact he has had the hardest time. He has been acting up alot and really struggling. When he came in to see Jaden he looked at him and then asked why his eyes were open since he was supposed to be sleeping. There is also lubrication on his eyes to help keep them moist and he asked about that as well. He then touched his hands and was done and wanted to leave. Now they are just trying to balance his blood pressure and oxygen levels with the sedation and pain killer medicines. Jaden keeps wanting to wake up and then they have to bump his Fetenal & Versed (sp) but then his pressures go down. So it will be a balancing act all night.

So I slipped out and took a shower and then I quick just ate dinner. Then I came back so Sal could go eat. We are both really tired but it is hard to sleep when Jaden is still not stable. So I will try to send Sal to rest for awhile.

The surgeon, Dr. Bryant, came to talk to us around 8pm. He said Jaden did really well and he said they did not touch the stent because it was way tooo hard to get at. So they felt it was best to just leave the stent alone. They did have to put a hole between the upper and lower chamber to help with the pressure. So because of the hole his oxygen level will not be around 100% like they had hoped for. He will instead be around the high 80's.

We are all a little confused with the hole and the function of it and stuff. We get more clarification tomorrow. So for tonight we will just watch him very closely to make sure everything goes well. Sal and I will sleep at the hospital and the kids will stay at the RMH with Grandma and Candise. That's it for now.

The nurse just called from the surgery room at 6:30pm to let us know that they were done (2 hours 15 min on Bypass). They are now going to start closing him up after they monitor the flow and function for a little bit. Sal had asked the nurse what the surgeon had decided to do about the narrowed artery and she did not know. She told Sal that the surgeon would be out to talk with us in a little bit to let us know all of the details. It will still be awhile before we can go see him and for him to be stable. I am sure many hours still.

At 2:30 the surgery room called in the waiting room to let us know that they got the lines all in. They said Jaden was doing well but it was quite a challenge to get the lines in. The next step then was to get through all of his scar tissue just to get to his heart. I posted a picture below of his chest right before we left the house. Pretty massive. They now just called to let us know they finally got through the scar tissue. It took them 1 hour and 45 minutes just to get through his scar tissue. That was very long. Jaden is now on Bypass and they are going to be starting on his heart. So many prayers as this is the critical time for concentration and accuracy. What the Bypass does is keep Jaden alive. They have to cool his body very cold so they can stop his heart to work on it. Strength for Jaden and all of us as we wait here for him. Here with our family is; grandma Rose, Auntie Robyn, Grandpa Kurt & Mattie, great Aunt Diane and friend of the family Candise. Tia Kelly and baby Whitney will be coming later and Uncle Ryan is at home sick. He and his family will be coming later in the week. We will update when something else happens.

Today has been a long day already and Jaden just went under at 1:19pm. He did fine all morning until it was time to go in and daddy got in his scrubs to take Jaden back. Then Jaden started crying and was saying no, no, I don't want to go. That's when I lost it. I gave him hugs and kisses and then Sal took him back until he went under. We are now in the surgery waiting room. We will update as we progress. It will be a long day as it is 6-8 hours and we just started at 1:19pm.

Today has been quite a busy day. We had last minute things to get done and finish packing. We got the kids out of school early to head down to the cities. We got to the Ronald McDonald House around 3:30 and checked in. We also turned in all of the pop tabs which was really fun for the kids. We had a lot to turn in. In the mix of all of this we got a call from the hospital saying that Jadens surgery was moved back and instead of checking in at 5am we were to check in at 10:20am with a start time of 12:20pm. This was not all that exciting to hear. But now we get a little more sleep at least. So we will not have any updated news until at least 12:30pm. We will update as soon as something happens.

Yesterdays Pre-Op Physical went well overall. We explained to Jaden where we were going and what we were going to do. When we got to the hotel he kept saying he wanted to go home. I asked him why and he said, "the Dr.s will shock me." I am not sure where he got that from or if he meant giving him a shot. He said that again when we were at the Dr.s. Jaden was scared the whole appointment and when they wanted to do the EKG, he was crying and yelling no. We tried everything and nothing worked. We had brought his doll JoJo who taught Jaden how to go potty in a potty chair and we hooked up the EKG stuff to JoJo but that didn't help. We ended up having to hold him down with the help of two nurses. Once we got the stickers on and everything plugged in, it was very quick with no pain. He was a big boy for his x-rays and stood exactly as he was told. I was so proud of him.

The surgeon came in and introduced himself. He is the Jr. Surgeon and his name is Roosevelt Bryant III MD. We did not know that he was going to be the primary one doing this surgery. He has only been doing surgeries for 2 years now. Sal and I were quite nervous for awhile. Then after getting to know him, we started to feel more comfortable. We asked him how many Fontans he has done and he said about 60 in the last two years. Dr. St. Louis who is the SR. surgeon will be doing the surgery as well, just not as the main surgeon. He is the one we thought was going to be doing it in the first place. So as we sat and asked many questions about Dr. Bryants medical history and his personal life, in the end we felt confident that he will do a good job. A friend, Jill, told me one day when we were talking at Northcrest that "two heads are better then one." So I kept telling myself this as the fairly new surgeon was explaining all that was going to happen. Hopefully with the two of them doing the surgery, if a problem arises a better decision will be made.

Dr. Bryant said every single thing lines up wonderfully for Jaden to get this surgery except for one thing. I thought when he said that, "give me a minute to prepare myself." Sal and I had not been given any indication before this point that there were any kind of issues. When all of the team met at their Friday meeting, this was brought to all of their attention. Due to Jaden having the stent, this is where the problem is. The stent is in the main artery where the blood will flow from the heart to the lung. The reason this is a problem is because the side where the stent is, is more narrow then the other side so blood will not be equally flowing to the entire body. No one at the meeting could make a decision about if they should enlarge it more at surgery or leave it be. They decided they can only make this decision when the chest is open and they are looking at the heart. Where the stent is, is very hard to get at. So the complications, if they leave it alone, his body may not be able to function properly with the uneven blood flow and they may have to go in later to do another heart cath to try and enlarge it. The problem with this is you run the risk of the stent popping and then he could die instantly. (This is the problem anytime a stent is dealt with). If they do it in surgery and it pops, then Jaden would already be on Bypass so they could just repair it if that were to happen. Doing this would cause more complications though and possible more issues in the future. So they do not know the best option. Jaden could be fine with the uneven blood flow or he may not be. Either way is risky so they just want to wait to see what all they are dealing with when they open Jaden up.

So lots of prayers: 1. for our family and Jaden to stay 100% healthy from now until surgery. 2. for the surgeons to be completely rested and comfortable the day of the surgery with a clear mind. 3. for the surgeons to make a wise decision when they are looking at the stent and what to do with it. 4. for Jaden to stay strong through all of this and come out of the surgery with his strength, strong will, and spunky attitude he always has. 5. for us to be able to stay calm and know that God is with us all and to help Ash & Ethan work through it appropriately as well.

Like I said, lots of prayers are needed. But I told Dr. Bryant, I was going to take a picture of his 6 year old son and put it next to Jadens face so that he treated Jaden like his own. Dr. Bryant said he would do that even without the picture. After I said that, Jaden started poking him and hiding from him and Dr. Bryant then instantly fell in love with Jaden. After Dr. Bryant left he even came back in trying to give Jaden a piece of candy. So now Jaden has his surgeon wrapped around his little finger which is exactly where I want him to be.

Jaden was a wonderful boy yesterday and he endured a lot but didn't act up or whine or anything. We were so proud of him and how well he handled his very long day.

We had a scare yesterday thinking the kids might be sick again. Sunday night Ethan had a low grade fever. I was like "great not again." I checked it 30 min. later and no fever. So then I was like "this is strange." I checked it again in the middle of the night and then Monday morning and still no fever. We decided to keep Ethan home from school just in case. Ashley also was complaining of a stomach ache Sunday night and then Monday morning so she stayed home as well. As the day went on, they both showed no signs of feeling yucky. They were contained to their rooms with only reading available to them and masks on their face all day. False alarm I guess. Hopefully nothing still comes of it. They went to school today and seemed just great this morning. We used the diffuser all day yesterday and moved it to every single room. We also rubbed oils on all 3 of the kids chests all day long.

Sal and I will be taking Jaden down to the cities Wednesday night for his appointment Thursday morning. We are going down the night before because we will sit in traffic for hours if we go the morning of. My mom will come and stay the night with Ash & E and then take them to school in the morning. Thanks mom!!! Krisin, I was a little confused as well why we are doing his physical the week before. I guess the only rule as far as the physical goes is we can do it out one week. I would think they would want it to be the day before but 1 week out is fine. It will be long for us as it will be 3-4 hours long. We will do an echo, chest xrays, blood work, meet with the Cardiologist and meet with the Surgeon. We have never met the Surgeon so I am very anxious to meet with him and ask him questions. Hopefully Sal and I feel very confident with him, his experience and his ability to do such a rare and difficult procedure.

We will then go down next Tuesday to check into the Ronald McDonald House for surgery on Wednesday. We will bring all of our pop tabs that everyone has helped collect on Tuesday and turn them into the office. Wait until you see the pictures we took with the pop tabs this past weekend. It was very fun. We will have access to them in a few days.

That is all the updates for now. Jaden is staying healthy. We just need prayers that he does not get any bugs in his system when we go to his Dr. appointment on Thursday. I am very nervous about that. We will try and have him wear a mask if he will cooperate. At least while we are in the public areas.

The weekend went really well in our house. Pretty much everyone is done with their colds. We even dared to go to the mall for a little bit to get the kids some winter gear (we found hand sanitizer in many locations around the mall and definitely used it each time we found it). Now we just have to keep the colds away for the next few weeks so that we don't have to reschedule surgery again.

There are only 38 days until Thanksgiving. There are 16 days until Jadens surgery. The average time of stay in the hospital after this surgery with no complications is 5-14 days. That leaves a window of 8-17 days leeway to not be stuck in the hospital for Thanksgiving. We spent Thanksgiving in the hospital 2 years ago. We also had a stay in the hospital 1 1/2 weeks before Christmas and then another time a few days after New Years. I think we have had enough holiday time in the hospital.

So we are working hard on keeping those pescky BUGS out of our house.

So Jaden's pre-op physical will be Octber 29th in the morning and then his surgery will be Nov. 4th. We will have to be to the hospital at 5am with a start time of 7am. So hopefully we can get him healthy and extra strong by that time.

I just want to say thank you again to everyone for your constant support and love. It has really helped keep us strong and looking forward not backward. We are very blessed by all of the support you all give to us each and every day.