Gonzalez's Heart

Thank you Steph T. for updating for us. We have been SO tired and it has been hard to even turn the computer on.

We just got back a little while ago from our appointment. We were there for about 2 1/2 hours. Dad and Mattie watched Ashley and Ethan and then after the appointment we went back and had dinner with them. The kids will be staying overnight with them tonight and then Kelly will pick them up in the morning and is coming to visit for the weekend. That will be nice.

The appointment went well but the "mystery" is UNSOLVED. Jaden had an echo done and then we met with Dr. Bass. We was very thorough and very pensive. He said the echo looked pretty good. He did not like it completely because he likes things "perfect" he said. Jaden's heart was not functioning as perfectly as he would hope and expect it to after the surgery. However, it was not bad and nothing to be alarmed or overly worried about. He was very concerned though with the symptoms that Jaden is having and the fact that it is 2 1/2 weeks since his surgery and he is just as miserable since the day he had it. He had suggested that we check Jaden into the hospital today. With much hesitation, I asked why. He said, "I think we will need to have the Neurologists check him out and start looking at areas that are less obvious to us." He said not much of anything will happen over the holiday weekend with tests. So I asked him if we could just come back Tuesday. He said that would be fine because he did not believe Jaden to be in any danger that would truly need him to stay in the hospital at this time.

He mentioned that Chip was in the hospital and that he was going to maybe make his way up to see us. I asked Dr. Bass if he could call Chip and tell him we wanted him to come talk to us. So he called Chip and Chip came up with in 10 minutes. Chip did his own evaluation and then the 2 Dr's, Sal, Jaden and I talked for about 15 minutes. It was nice because we were getting 2 Cardiologists for the price of 1 ;-) So together we all came up with it would be safe to take Jaden home and then to come back at 9am Tuesday morning and admit him. We have an appointment to admit him then for Tuesday. Dr. Bass will be talking with the Neurologist Tuesday morning and they will determine our next step. We will for sure be getting an MRI and/or a CT Scan done. We will definitely be doing many things to ensure something simple was not overlooked.

When we were about to leave Dr. Bass said, "you definitely have a lot of people scratchy their heads now." It is so weird how Jaden is having some major complication going on in his body, yet no one can figure it out. All of his tests come out good, yet he is MISERABLE!

This will be very hard on all of us since we thought we would not be back in the hospital for along time. The kids will have a really hard time knowing that Jaden and I will be leaving again. Hopefully this will be a very short stay and someone will have had God hit them over the head with the solution. God is definitely challenging us all here and is making us work to our maximum capacity. Jaden could have a very simple problem, a very major problem or it could just be growing pains and all of the sudden he is fine. Only God knows at this point. I am sure anxious though for the moment when God decides to share it with someone else.

Thank you for the continued prayers. Love to you all and hope you all have a great holiday weekend as we bring in the new year.

Gonzalez's Heart

Hey there! Steph T here posting an update for our little superstar. =) (Steph G told me I could).

Yesterday I called Steph to see how she has been feeling. A little bird told me that they had a bug. Not to mention that 3 doctors appointments in 1 week has them run a little ragged, they are also quite sleep deprived. I offered to bring her a meal, coffee, or run to Target for her. Surprisingly, she opted for some Chicken Noodle Soup (and later sent Sal for the coffee, of course). I took the soup over last night and was tickled pink to get a chance to chat with my friends plus get a look at Jaden.

Their Wednesday appointment with the doctor was a little more helpful than the others had been. Through the appointment Jaden was in a good mood, smiling, etc, but when they laid him down to get him dressed, he started crying. The doctor then realized that this is what Steph & Sal had been talking about. She agreed with them that "this is no bug." She looked him over again, trying to see if there was anything obvious. They decided that Jaden needs to go in to see Chip and got an appointment scheduled for next week. Since he has woken up from surgery, Jaden insists on laying only on his side to sleep. So he sleeps with his head elevated and on his side, with his knees drawn up to his chest. He does not tolerate being on his back at all.

Yesterday (Thursday), the home care nurse came by to check on Jaden. She was not at all pleased with how he looked. (Don't we love her for sticking up for Steph?!) She insisted that he needed to see the cardiologist now, not next week. So began the phone calls to work something out. Of course, Chip is not available today (he is working down in the cities), so he actually referred them to a different cardiologist. He said they would have all of Jaden's records sent over, and that Chip himself would put his work aside and come over if needed during the meeting (how is that for a change?). That appointment is this afternoon. Please pray that God would give the doctors wisdom as they look at Jaden, and possibly be able to solve the mystery that is going on.

Now for how Jaden looked to me. :) When I got there, he was sleeping. Eventually he woke up (yeah, I stayed a while). The first thing I asked was if he had a fever. Steph said, "No, he's just actually pink!" That was so wonderful to see--pink cheeks on our superstar. He was fussing pretty hard, but once Steph made a bottle and took him in her arms he snuggled right into her and calmed down. Wow, does he love his mama! He dozed in her arms and when he woke up again, he seemed more content, but it wasn't the Jaden that I'm used to seeing! With every breath he took, he seemed to have a little grunt as well, as if in pain but tolerating it. He also had his knees curled up almost the whole time he was awake--totally not the "bouncing baby boy" that wears your arms out. He did smile and play for a few minutes, and then it was off to bed again. I am a stranger to him, and he kept eyeing me down to make sure I wouldn't poke him and I did get a smile from him as Sal said goodnight and carried him off to bed--yay! I sure can't wait until he's feeling better!

Finally, another rave for Fifth Gear and Sal and his dad! Our car has needed the catalytic converter replaced for some time (due to a hole in the pipe). Their speedy service had my car done in only one day. It is so much quieter now and no more stinky exhaust in the car! Yay! :)

Hope everyone has a great day!

Gonzalez's Heart

We wanted to wish you all a very MERRY CHRISTMAS!!! We are all doing well and were very glad to get to be home during this time of year.

Jaden is doing so so. He is not sleeping well and has been still having some sort of pains. We think it is something abdominally. He has not been eating well and has not had enough wet/soiled diapers. We took him to his Dr. appointment Friday and they did not like how he was doing so they made us come back Saturday. They were a little more pleased with how he was doing. They want us to come back Wednesday for another check up. Hopefully he starts doing better. They did say if he would not improve that we may have to go back to the hospital.

We will not be going down that road. So we need a lot of prayers to get him to a more stable place.

Thank you again for all of your support and prayers. We will continue to keep you posted with how he is doing.

Love to you all, Steph

Gonzalez's Heart

A really quick note to let you all know we are at home. We have spent all afternoon settling in trying to unpack and work on laundry. Jaden has not been feeling well at all and is still in a lot of pain. We have obviously not kept up with the pain meds like the hospital.

We will let you know tomorrow how the rest of our night goes. Ethan is turning 5 tomorrow and has a Christmas pre-school program and then we are having a little b-day praty for him afterwards. Hopefully Jaden will not be having too much pain.

Talk to you all tomorrow.

Gonzalez's Heart

So far so good. Jaden has not had another fever yet and they did pull his last RA wire. So if he does not get another fever or if nothing else happens from now until tomorrow morning, we will get to go home. Sal is coming tonight and Lana is staying at home with the kids. Hopefully all goes as planned and we will be rolling home in the afternoon tomorrow.

If we leave tomorrow, I will not be posting until later tomorrow. So as many of you have said before, "no news WILL mean good news."

Love you all so much and thank you from all of us!! Sal, Steph, Ash, Ethan and our fighter Jaden.

Gonzalez's Heart

Jaden has been doing pretty good. Yesterday he spiked another temp. in the late morning. After that he took a nap. When waking from his nap, he was content and looked pretty comfortable. For the remainder of the day he did well which was a huge accomplishment for him. We took another abdominal x-ray last night because he looked bloated and still was pulling his legs in. They saw a lot of gas so we put him on some gas drops last night and he looks quite a bit better today.

He has been hanging out this morning playing a little. He seems to be getting over this mess. Let's hope he continues to improve and does not get another temp. So far we have gotten nothing back from his labs that would keep him here. If we keep getting nothing back and he gets no more temps. then hopefully we will be on our way closer to the door out.

Jaden is watching Sesame Street right now and seems pretty interested in it.

Hope you are all getting your Christmas shopping and preparations done. Enjoy this time of year.

Gonzalez's Heart

The plans have changed many times with in the last 2 days. At one point we were going to go home today and then at another point we were going to go home tomorrow. Now we are not sure when we will get to go home.

Friday night Jaden's eyes were a little glazed like, and one had a little discharge. I pointed it out to everyone and we were watching it. Then Saturday morning both his eyes were like that as well and his ear had a rashy look to it. Since Friday afternoon until now Jaden only wants to lay on his left side and when he lays on his back he cries really hard. Then yesterday afternoon we did a rectal temp. to try and help stimulate him to poop. We then discovered he had a temp of 101.7. He had also been sleeping all day Saturday so we knew something was not right with him. We sent in blood work and saw that his CRP's were elevated which is to help with inflammation. This can be common after surgery so we were not overly worried. By the end of the day yesterday he was pretty miserable.

So today he has been very uncomfortable all day long. He has had a hard time sleeping because he is not comfortable. We have checked his ears, did a nose scrape, urine check and all has come up good. We did an echo yesterday, a chest x-ray this morning and an abdominal x-ray today. All looks well. We are hoping this is just a little bug that will work itself out. Well, just a little while ago we took another rectal temp. and that came up with 103.6. With a temp that high, obviously Jaden is feeling horrible. After that temp. we sent in more blood to be checked again.

Now obviously we will not be leaving tomorrow due to his temp. shooting so high. We will wait to see what his blood work comes back with and determine what we do from there. So we need strong prayers that nothing comes back and his temp. works it way through. We were here in November for 3 weeks and 10 of those days were just working through the antibiotic treatment. My goal is to just get home by Christmas Eve. So we have a few days to get this out of his system. I will update you all tomorrow with what we find in his blood work.

Love you all!

Yesterday they took out all of Jaden's chest tubes, his pacer wires and one of his RA lines. It took a little while to get all of that out and Jaden was not happy. One of the chest tubes was extra difficult as the skin had grown over the stitch that held it the skin. We had to cut the skin a little bit in order to get at the stitch.

Now we are watching his fluid out put and his eating. (No Sara, he does not have a feeding tube). He still is retaining fluids and his face is still somewhat swollen. He is much happier now that the chest tubes are out and he has eaten a little better and played a little bit.

I bought him an elmo balloon yesterday and he keeps giggling at it and wants to put it in his mouth which of course is impossible. He has been licking it some which is second best to getting it in the mouth.

They have mentioned we can leave with in the next day depending on his fluid, eating and how chest x-rays look. I am of course anxious to go home but am nervous as this has gone so quick. He just had surgery on Monday and they already are ready to have him go home. When he is ready to go home I will know.

Below is a slide show from his pre op x-ray from last Friday, the pre op waiting room and the family waiting room on Monday to yesterday. Some of the pictures may be hard to look at.

Jaden's 2nd surgery.

Gonzalez's Heart

Jaden had a pretty good night last night. This morning Kelly and I got here and he woke up and gave us a little smile. He was up for about an hour just kind of hanging out. I even held him for about 5 minutes and then he was way to uncomfortable so I put him back in his bed.

He just went back to sleep. He is doing a lot better with his pain and being a little more happy. He did not eat much last night but this morning has already taken 4 oz. Hopefully today can be a really good day for him and maybe they can take out at least one chest tube.

I just wanted to say again how wonderful the RMH is. Two days ago I had come back there late from a long day at the hospital. I walked in my room and found a little gift from them. There was a cute poem talking about "On the 12th day of Christmas the RMH gave to me..." It was really cool to find after my day. Then yesterday there was another gift. They will be doing a gift everyday I am sure...

There were also plates of home make Christmas cookies in big ziploc bags sitting on the counter for us to help ourselves to. This morning there were breakfast bags that different groups always make and drop off there. This time, there were little keychains that stated things like love, family, etc. This place just makes life so much easier when staying at the hospital. It is wonderfully decorated with Christmas decorations and many different Christmas trees. It is a place you could be happy at if you can't be at your own home especially for Christmas. They have a little gift shop and Sal and I went there and got the kids t-shirts that have a huge pop tab on with a very little person holding it above their head. On the back it says, "support the RMH which supports the families which supports the children." It is so cool. All of those proceeds go directly toward the house. If you ever want to give, I would definitely give to this place!

I know they have a wonderful Christmas planned for the families with a ton of wonderful gifts for the children. I was telling Sal the other day that if we lived in the cities and I were to get a job, it would definitely be with this organization.

Thanks for the prayers. Love you all!

Gonzalez's Heart

We moved to the floor yesterday afternoon. It was a good transition. All of the nurses were happy to see Jaden again but this time with his surgery behind us. Jaden had a paparatzzi following him all the way to his room. Then they all kept coming back to look at him. One of the nurses said she had never seen him so quite and still.

We are still trying to control his pain and find the happy medium. His 3 chest tubes are all still in and this mornings x-rays showed he still had quite a bit of air in his lungs. They checked the tubes and the connections were a little loose which would be why the air was not being pulled out. They tightened the tubes and increased the pressure of the chest tube box thing which is what helps to suck out the air and fluids. We will do another x-ray later today to check on the air in the lung area.

He has not been eating much for the last day and a half. Hopefully he will start to feel better today and start eating again. I still have not held him yet as he is in so much pain. The aide was just doing his vitals and she got his first smile since surgery. I told her she was fired. He was supposed to smile at me first. But I guess he is a flirt and when a pretty girl comes along he has to put on his charm ;-) It looks like Jaden is coming around...

Gonzalez's Heart

Jaden is doing really well. He slept most of the day yesterday and last night. When he wakes up, he is very uncomfortable. They are still having a hard time getting his pain meds to the right place and that is hard for us to see him totally out of it or in complete pain.

He is very stable and looks really good this morning. His face is still pretty swollen and when he wakes, he rubs his face because it is so uncomfortable for him. He can only open his eyes a little bit.

They talked about moving us to the floor today. That is always a hard transition because you don't have the one on one care. It will be good though as he will be bothered less and it will be much quieter. I will let you know if anything changes and when we move over to the floor.

Thank you all for your continued support.

Gonzalez's Heart

We had an eventful night. Since Jaden is SO strong, the morphine was not helping him. So they had decided to put him on a constant morphine drip. This ended up being too much and his sats kept dropping. So they had to use a drug called narcan which reverses the morphine some. He was very angry and agitated so they also gave him a drug called chlorohydrate which takes the edge off. This has helped a little but he did not get much sound sleep. Right now he is sleeping really well and has been for a good hour or two.

He is pretty swollen today which is pretty common. He has not been out putting enough urine so they started his lasix back up to help him. His hemoglobin and potassium are both low so they are giving him a blood transfusion and some potassium which helps the heart contractions better.

Now for the lines. During surgery they had to put the line in his neck because that was the only option we had left. They pulled that out right when they were done with surgery. They also got one periphial line in his hand for a "just in case," and a line in his groin. The main lines which he is supposed to be able to keep his whole stay are attached directly to his heart. They are called right atrium lines (RA). So the RA line has fallen out of the area they need it to be. They should be able to just move it around a little to get it back where it needs to be. It could have fallen a little also because he has so much extra fluid in him at this point. We will have to watch that and work on fixing that. Right now the nurses are switching the antibiotics to the other RA line to hope that this one is still in the right spot.

So nothing to major at this point but not completely stable or where we want him to be.

Gonzalez's Heart

Jaden is stable and looks really good. He is asleep and they will extibate him as soon as he comes to a little more.

Sal and I were about to go in to see him and the nurse stopped us and said we had to wait a little longer. She had said one of his lungs had collapsed a little and they needed to put in another chest tube to help release the pressure from the air that had collected around his lung. They said this should not be a problem and the chest tube will solve the problem. Having to go in after the surgery to add a chest tube does not make it any easier on any of us.

He is a trooper and is super duper CUTE!!!

Gonzalez's Heart

Dr. Harrington came out to talk to us at 2pm and said everything went well. She said they got the lines in fine and they would bring him up for us to see him in about a half hour. Sal and I just went to go see him and they kicked us out for about 30 more minutes. The anestesiologist came into the lounge and told us very confidently that things went well and he was very pleased with it all. He thanked me for the prayers and said I should be here all of the time to pray for his other patients. It was really cute.

So far so good. Tonight is the critical recovery time so we will stay here in the lounge overnight to be very close.

Thank you all for your wonderful prayers. Love, Sal, Steph and the kiddo's

Gonzalez's Heart

Jaden is now off of bi-pass. He was taken off around 12:35pm. Dr. Harrington will be out to talk to us in a few minutes. Then after that they will be rolling him up to PICU and we will be able to see him. I just got a phone call and my dear friend said, "you will feel much better after you see him." After hearing that, my hands got all sweaty and I was nervous and anxious to see him.

I have a cold so I will have to wear a mask when seeing him. Hopefully it goes away really fast so when Jaden is extibated and wakes up, that he can see my face sooner then later.

Gonzalez's Heart

Just an update, Jaden is now on the bi-pass machine while they are working on his heart. We want him to get off this as soon as possible to help ensure no complications. Everything else is going well so far.

Gonzalez's Heart

So far so good, 8:40am they made the incision. So Raj got it done and got the lines in that were needed. Thank you Raj. So now, the prayers need to be directed to Dr. Harrington and the rest of the team.

It is a very bitter sweet moment. They got the lines in but now his chest is open and they will be working on his heart.

Gonzalez's Heart

Good morning to you all.

Jaden had his special (pre-surgery) bath last night and then Lana and I made an ornament one with his hand and another with his foot. We had a good night with him.

He slept wonderfully and slept through our walk to the hospital. We got here at 5:30am and then we went back to the room to start the check in process. Jaden was really happy and then took a nap through all of our paperwork. The anesthesiologist came in and I told him of the problem we had the last time around. He was very friendly and I felt very comfortable with him. His name is Raj. So started praying hard for him. Without him getting the lines in, we won't be able to move on with the surgery. He came back in after talking with Dr. Harrington our surgeon and I told him I was already praying for him and he said that is good to know.

We will let you know more...

Gonzalez's Heart

Well, tomorrow is the big day. Jaden has made it through the weekend without getting sick. Thank you to all for those prayers as God has clearly answered them. We will have a very short night tonight as I am sure we will not get much sleep and then we have to be to the hospital by 5:30am. The surgery is supposed to start at 7am. We will need lots of prayer for the surgeon's wisdom and calmness, as well as her team. On top of that, we REALLY need prayer for them to be able to get the lines in that they need and for there to be no problems with them. The team met on Friday to discuss Jaden and the complications he has had with all of his lines. They have discussed alternatives and have a plan that they will be taking. Hopefully with all of this discussion before hand, everything will be smooth sailing.

We will be updating multiple times through out the day so when you check, you may want to check previous posts.

Thank you again to all as your support has helped us through this so much eaiser.

Love you all, Steph

Gonzalez's Heart

Jaden and I came down to the RMH today. I had called yesterday in the morning and they had a waiting list of 6 families. They did not think we would get a room for awhile. By the end of the night, they called with a room. God was definitely watching over us. So Jaden had his pre-op physical today at 1:30.

They checked O2, EKG, blood pressure and of course they had to do lab work. I had warned the lab tech that he is a very hard stick and she assured me that she could get it. I gave her one try. She tried, and as I knew would, she failed. So we called the nurse practitioner, one who works in the heart cath. a lot. She tried and got it the first time but then it started to spasm so she had to pock again because she could not get enough out of the spot she was in. The next time, it did not work at all. So we then calmed him down a bit and tried for the fourth time. That time it worked.

It was very hard for me as it was starting already. Complications and set backs. The appointment was supposed to be a short one and ended up taking 3 1/2 hours. But how I see it, it took 4 times to get his lab and then it was fine. This is his 4th scheduled operation this time around, so it should all be fine. Right?

Well, we thank you all for your continued support and prayers. It means so much to us to know we have so many prayers coming our way. We just need to keep him healthy through the weekend. Sal and the kids will be coming tomorrow and the surgery is still scheduled for Monday morning. We have to get there at 5:30 a.m. and it is scheduled to start at 7 a.m. We will keep you posted if anything changes, otherwise we will let you know Monday as things unfold.

Thank you again and pray hard!!!

Our Christmas tree cutting.