Saturday, November 28, 2009

We hope you all had a wonderful Thanksgiving and got lots to eat. We all went to moms house and then played a games after eating our feast. It was a great time and much to be thankful for. Everyone had a good time. It was a little much for Jaden. When we got home and later tried to put him to bed it was a struggle. He woke up on and off most of the night just crying. I am guessing he is just having a lot of nightmares and trying to cope with it all mentally.

His appointment with Chip went well. We did not do any blood work or an Echo. I was quite surprised by that. Chip said he sounded and looked good and that we didn't need to see him again until Jaden turns 4. Thats far out especially not having an echo but I guess it should be fine. We are watching all other areas with Jaden to see if anything else comes up.

Today we all went with mom, Jose and Candise to the Christmas tree farm we go to every year and cut down a tree. It was a lot of fun and we had perfect weather. i will try to get some pictures up.

Well better go and finish dinner.

Love to all!

Wednesday, November 18, 2009

How the days fly by. We will have been home for a week tomorrow already. We are all trying to regroup and get back to a more normal life. Ethan is still having some issues with lots of whining and break downs. Getting into a little trouble in school as well. But we are trying to remain patient with him and work through it. Ashley is having a lot of fun with Jaden and they are always hanging out together. Sal is trying to get caught up from all of the work he missed and he is exhausted. I have a very loud to do list that I am slowly catching up with.

Jaden has had lots going on. Home Care came Monday and today. Speech-Jessie & OT-Janelle from the school district came together bearing gifts for Jaden on Tuesday. Lana a family friend came on Tuesday after Jessie & Janelle left. Jaden had his Pediatrician check up Tuesday afternoon. Everything looked good as far as Cardiac was concerned. But Dr. Kulus felt Jadens stomach because he had been saying his tummy hurt and I told Dr. Kulus he has been complaining about that since a few weeks before the surgery. She thought his Liver felt enlarged. So we are having an ultrasound tomorrow morning to check it out. Then next week when we go and see Chip, the Cardiologist, he is going to do extra blood work to check on that. So hopefully nothing bad comes of this as he has gone through so much already.

I am still working on making time to upload pictures onto my computer from the camera and then on to the blog. That will come soon I hope.

Friday, November 13, 2009

We got home right after the kids got home from school yesterday and we surprised them. The second we walked in the door Ethan broke down and sobbed. I had to hold him on my lap for a long time. It was as if he was holding it all in until the second we were home and safe. He then continued to hug me all night long. He went to touch one of Jadens "war wounds" and Jaden said no and started crying so then Ethan started crying because he felt so bad for Jaden. He told me he loved me about 10 times last night and said I was the best mom in the world a few times as well. Ashley just sat by Jaden very quietly through out the night. Sal had surprised us all with some gifts to open. So we had a very good time with each other last night and we look forward to this weekend to just hang out.

Today Jaden has been very mellow and quiet. A Home Care nurse came this morning and Jaden was very scared of her coming near him. We worked through it very slowly and he did just fine. His oxygen was at 91. Awesome. Then at naptime he was crying and scared to go to bed. So I had to hold him, then lay beside him touching him the whole time. Then once he was asleep I could leave the room.

He does not want to change clothes at all and wants to keep his zip up short zipped up all of the way. It is so sad how he is so worried about his chest. It will take time I know but it is just sad to see him have to go through all of this.

Thursday, November 12, 2009

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 ;-)

Wednesday, November 11, 2009

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.

Monday, November 09, 2009

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.

Sunday, November 08, 2009

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.

Saturday, November 07, 2009

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.

Friday, November 06, 2009

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.

Thursday, November 05, 2009

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.

Wednesday, November 04, 2009

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.

Tuesday, November 03, 2009

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.