Saturday, November 25, 2006

Gonzalez's Heart

We are home!!!

Thursday, a little bit before we were all going to go over to the RMH, Jaden's line blew out. It was such a horrible feeling. I knew we were going to need to try and put another one in. I was not looking forward to what we were going to have to go through again. Vascular Access came to make sure the line was no good. The guy that came up was going to try to put a line in and I said that I needed Ray to do it. He is one of the few that could do it in the past. So Ray came and we all prayed and he got it the first try. I was so relieved. So Jaden went down for a nap and we all went over to eat. There was a perfect spot for us all to eat and PLENTY of food.

After everyone left I called the hospital and they said Jaden was fine and playing in the hallway with all the nurses. So me and the kids went to bed.

Grandma came in the morning so I could go over to the hospital. When I got there, we found out that his line had blown out yet again. At this point he only had one more dose of antibiotics so we decided that he would just get a shot for the last one. The shots are not as effective but the Dr. thought for just one, it would be fine. Grandma and I packed up the RMH room and cleaned it. We then came over and packed up Jaden's room and left. Jaden loved his elevator ride down. It felt wonderful to bring him outside again.

We had a beautiful, sunny drive home. Jaden is still adjusting to being home and with the excitement of the kids. He gets a little overwhelmed and when ever I leave the room he freaks out. For now, the date for the next surgery is December 11th. I need to check on a few things before I agree to that date. I will let you know in the next couple of days if it remains.

Love to you all, Steph

Thursday, November 23, 2006

Happy Thanksgiving!

Hope you all have a blessed day and enjoy your family and all that you can give thanks for. God has been good to us and we are all able to be together today.

Jaden is doing well and happy. So far, we still should be able to go home tomorrow. I can not wait to be home and be in my bed and have a normal Gonzalez family life again.

Thank you all for your prayers. Love, the Gonzalez family

Tuesday, November 21, 2006

Gonzalez's Heart

Jaden has settled in really well here at this point. He is back on his schedule for naps that he was on at home. The last few nights he has done good as well and when he wakes up, he eats and then goes right back to sleep. Before, he would wake up and cry for along time because he did not know where he was at.

Yesterday we went all day and his line had not blown out. We were very excited. Then when I started to put him to bed last night, his arm was wet. So I thought he just bit through the cord with his new baby tooth that he has. So I called the nurse in and she changed the cord. She went to flush it and sure enough, it was not the cord but rather the site. The hole had gotten larger and the flush was leaking out the edges. It is good because we did not loose that vein but we had to put another line in. So Vascular Access came up to put one in with their doppler. Well, it took 3 times to get it in. I felt horrible for Jaden but after a lot of big hugs he was fine. Vascular Access felt awful. His face was all red and he apologized to me. He tried really hard and I knew he was really concerned about doing it the first time.

Our family will be having some gobble gobble at the RMH. They have a lot of volunteers who will be their cooking all day. Right now the community fridge is filled with lots of Turkeys. We will take turns coming to visit Jaden. Then hopefully we will get to go home Friday or Saturday.

Hope you all have a great day.

Sunday, November 19, 2006

Gonzalez's Heart

Where do you think that Jaden and I are? Where do you think Sal and the other two are? If you guessed that Jaden and I are still at the hospital and Sal and the other two are at home, then you guessed right.

After meeting with infectious disease and the cardiologist team, we were left with two options. The first is to have Jaden get a PIC line tomorrow. This option has some negatives. This would be much harder on Jaden as he would need to be sedated and put under anesthesia. He would also have more chance of getting infection from the line. We would however get to come home Tuesday. The second option is to keep the perifrial line he has and hope it lasts awhile. This option, the line will probably blow out so we will need to put another line in when this happens. Jaden has been an extremely hard baby to get lines in. This would be easier on Jaden but we would have to stay in the hospital until Friday or Saturday.

As of now, we have decided to stick it out in the hospital. This seems to be the easiest on Jaden. We will make that final decision tomorrow when everyone is back to work and we can get more information on our options. So we will most likely be spending Thanksgiving at the RMH. Our families will come here and join us. RMH is having a Thanksgiving meal and it is open to our extended families as well.

That is all for now.

Saturday, November 18, 2006

Gonzalez's Heart

I hope you are all doing well. The Dr's. had decided that we would most likely get to go home tomorrow. Late this afternoon they came in and said they had found a third bacteria. The antibiotics that Jaden is getting will not work with the bacteria they found. So tomorrow infectious disease will be coming in and they will figure out exactly what needs to be done and if we still can leave tomorrow. They are a little concerned because last night his sats were hanging low. Hopefully he has a great night and then tomorrow we can figure out a good solution so we can get home and have him recover there where he is comfortable.

Will update more tomorrow.

Friday, November 17, 2006

Gonzalez's Heart

Gonzalez's Heart

So here is the scoop. We had two lines in Jaden's arms to work with and hopefully make it through the weekend. Well last night one of the lines went bad and his arm got swollen. So we had to remove that one. So today in rounds they all put their heads together and decided that what we will do providing nothing happens from now until then, that Sunday in the morning we will give Jaden his last dose of antibiotics and then they will let us go home. No PIC line will be put in providing all goes as planned. We will then get his last 2 doses of antibiotics by shots. The clinic we go to or home care will give it. Not sure which one yet.

They are trying to get me a surgery date by the time we go home. They said in between Thanksgiving and Christmas sometime. I said I would like a date even if it is tenative. So we will be rolling home in just 2 days. I am so excited. I am nervous at the same time as the kids bring home many bugs from school and activities daily. I need strong prayers that he does not catch anything while we are back home. Obviously this will delay the surgery yet again.

He is doing well and we have been taking many walks on this level as we are not allowed to go anywhere else. He loves to be out of his room and especially loves to flirt with all the nurses. He has actually gotten back on his schedule for sleeping which is amazing.

Thank you all again for your great support and all of your prayers. It means so much to us. I was just telling Steph T. today that I can tell the difference between the families that do not have God in their lives and the ones that do. That ones that do not, walk around with a bad attitude, always seem upset and are always complaining. I was talking with one dad and I told him that God has chosen for his baby boy to have these complications to teach us something very important. He told me he does not believe in God or that way of thinking. I told him I was sorry and that I would tell him these things anyway. He said that was fine. What a way to be able to minister.

I am going to try to get a little nap in while Jaden is taking one but wanted to let you all know what was going on.

Thursday, November 16, 2006

Gonzalez's Heart

Jaden is doing well. He is not to crabby anymore and is able to eat much better. He still has some discomfort especially when eating, but overall is happy again. He does not have the Roto virus but we are still waiting on one lab to come back so they are keeping him in isolation. This is better anyways because he gets over stimulated very easily and having a roommate is to much for him.

He does have bacteria in his blood, urine and spit. It is through out his entire body and they are not sure how he got it. My guess is the OR and they just don't want to take blame for that. They are going to have to put a PIC line in him to finish off his antibiotics. This will go in the arm and attach at the heart. Depending on what they find today will depend on if they let us go home with this line until treatment is done or if we will stay here. They will probably be putting the PIC line in tomorrow. Because he is such a hard one to get lines in, they will come to his room first to do an ultra sound to make sure it will work. Our surgeon's nurse, Chirstie who is wonderful, has requested the best person to do this procedure so hopefully there will be no problems.

Monday and Tuesday I so rudely cancelled visitors because I was way over the top and could not handle the stress. I have now settled into our new situation and we are open for visitors again. Sorry to all who I turned away..

Hopefully by day end we will have an action plan and know what we do from here.

Love you all!!!

p.s. For those of you who are bright eyed and bushy tailed, KSTP will be broadcasting live tomorrow from 6-7am from the Ronald McDonald House. Ronald McDonald and Rusty Gatenby from KSTP will be here and they are making breakfast for everyone. I may go down but not sure if I want to be on TV :-) I am interested in the yummy breakfast though.

Tuesday, November 14, 2006

Gonzalez's Heart

I have posted a few times today so read below for a update.

We are now on "the floor" which is a area for just sick babies. Nothing extreme. We are still in isolation and they have started antibiotics to help get rid of the organism's in his blood. They are checking for a virus called "Roto" something which is why we are in iso. We still do not know how long we will be here for and if he has to stay through out his antibiotics which is 7-10 days. I will let you know as soon as we know more.

When we left picu, all the nurses were gathered around his bed in the hallway telling him how cute he was and they would miss him until he comes back in the next week or so. Then when we opened the doors to come to this wing "5A" three of the nurses instantly remembered us from when we were here the first time. They were all swooning over him. The funniest thing is, we are in the exact same room and even the exact same spot as before. Funny how things all work out.

Will update more when I know more.
Gonzalez's Heart

We are still waiting on a few labs but we have some results.

Surgery is now cancelled for the 3rd time. He has multiple organisms growing in his blood probably due to the arterial line. This could be a reason for the crabby pants, fever and so on. So they have started him on antibiotics. We will know later if the surgery is postponed for a week or 2. If it is a week, Jaden and I will stay at the RMH to hopefully help eliminate any other set backs. I will know later today but wanted to update you on the cancelled surgery.
Gonzalez's Heart

Sorry I forgot to tell you, his clot did clear up and that is good and ready to go.

Now we just need to get him healthy again. They moved us into an isolation room last night and are checking everything we can think of. I will let you know when all the results come back.

Monday, November 13, 2006

Gonzalez's Heart

Sorry for taking so long to update. We have had a busy couple of days. Jaden had a really good night last night but the past 2 days he has just not been himself.

Today he has started to show us signs of what we were trying to figure out for the last few days. He has had a rectum temp. from 100-102. He has had runny diapers, not eating well, threw up once and is EXTREMELY crabby. He is only taking cat naps so is falling behind on his sleep.

We checked his ears, nose and throat and found nothing wrong. They sent in his blood to check and see if they can find any infections. At this point they are not finding anything. His O2 level has been low so they have put him on some oxygen which has helped.

Overall, he his sats look good but it is very evident that there is something brewing. Please pray for this bug to work quickly through his system.

Saturday, November 11, 2006

Jaden wanted to say goodnight to everyone. We just took this picture and wanted to share it.

We will be staying in the PICU until the surgery because he has lines in him. Since it is so hard to put them in him and that is the reason we had to delay the surgery and now we are having some big issues, it is not worth taking them out to do it all over again.

Sorry for the very long and not correct sentence. I hope you all understand.

Good night to you all. Talk to everyone in the morning!
Gonzalez's Heart

Jaden had a pretty good night of sleep and then this morning he was very crabby and uncomfortable. He had not had a bowel movement for awhile and when he ate he looked very uncomfortable so I told the nurse I thought he needed a suppository. After getting that he filled his pants a whole lot and since he has been much happier.

They did another ultra sound on his leg and found the clot has not changed at all so they will now switch to a stronger medication called TPA which should help better. Because it is so strong they will switch after 12 hours back to Heparin. So Dr. Harrington (surgeon) came in this morning and said she put Jaden on her surgery schedule for Friday the 17th. Hopefully the TPA will kick into gear and help to get rid of the clot and then we can do our now 3rd scheduled surgery.

We will not have any new info. until after the next ultra sound which will be tomorrow.

Friday, November 10, 2006

Gonzalez's Heart

Today has just been a waiting day. We have been watching to see how Jaden's blood flow is in his right leg. It has seemed to improve but just a very little bit. We will be having another ultra sound on it tomorrow and then decide what we do next.

Since Jaden kicked out one of his lines last night they had to put in another one. So I made sure that whoever was going to do it brought their echo machine so we could get it in the first time. They came to do it and did get it in the first time. My hands were all sweaty by the time they were done because I was so nervous they would not get it. After they put the line back in, they turned his sedation drugs down and then waited for him to start coming to. Once he started coming to, he was ready to get off that bed. So we then quickly got him ready and extibated him. It felt so good to have him off the ventilator and breathing on his own.

He has been very crabby as I am sure his throat and who knows what else is really bothering him. We have been snuggling with him all afternoon. We will know tomorrow when the next surgery will hopefully be.

Thank you for all of your posts and all of you who are checking the site. It keeps us going and strong. Love to you all!
Gonzalez's Heart

Forgive me if I mumble through this but it is in the middle of the night and I had not been sleeping for more then 2 hours before they woke me up to update us.

Jaden's right foot and leg had not been getting good blood flow since after he was in the OR room. This could be from one or both (the heart cath. procedure and/or them getting in the artery instead of the vein yesterday). Our nurse Sally, had called the anesthesiologist who had been working on Jaden pre-op and he was not concerned. I however, had my motherly instincts kicking in strong. All evening I kept asking everyone, "are you sure this is ok?" I told them I was not comfortable with how it was not improving well enough. So a very thorough resident Dr. listened to me and decided to call for an altra-sound (which Sally thought unnecessary) just to make sure nothing was going on. Well there is something to be concerned about.

What we already knew was Jaden was occluded from the right femoral artery. Usually this is not a problem and it clears up on its own. The normal flow through the artery is about 60-80 cm and Jaden's is about 5 cm. At this point, 5 cm is enough so that his leg is not having big issues. However, it is to small that they want to clear it up before they do surgery. So the plan of action now is to wean him off his ventilator and extibate him as soon as they can. They will then give him a blood thinner at that point and wait for it to clear up which could be quick or take days. He will need to stay in PICU the entire time on this blood thinner. So the prayer we need is for Jaden's artery to get better flow so we can proceed.

So the nurse on tonight told me I did not look to surprised. I told him that Jaden was a little stinker and he does what HE wants to do. I also told him that God has planned for this and he is to wait for some reason or another.

Another tricky thing that Jaden did was he kicked one of his lines off of his foot. Now don't forget, he is being sedated with fentanlyl and versed. They had to increase the amounts even to even more because when it starts wearing off, Jaden is to strong. He also gets VERY mad and then his blood pressure rises very high. That just shows everyone who is truly in control and what a strong little boy Jaden is.

I will let you know if there is any new news and I will update after he is extabated.

Thursday, November 09, 2006

Gonzalez's Heart

As of 11:30 am Jaden went back up to the picu. The surgeon pulled him out of the operating room. The surgeon came out to talk to us and told us that she was not going to do the surgery today.

After about 4 and a half hours they still could not find the correct vein even after bringing in an interventional radiologist. They thought they had got the line in the vein and found that it was actually the artery which is not what they wanted. By this point his legs were totally blue and he was very cold so the surgeon said she would not proceed with the state he is in.

So tomorrow at 7am they are going to bring him to another OR where they have more specialized x-ray equiptment to hopefully get the line in the right location. The only other option if they can not get the line in the right spot is to put it in the neck which could cause a lot of problems with blood backing up so they don't want to do this. After they get the correct vein or take the alternative action (which we will pray it won't result in this), they will move him into the the cardialogist OR room to proceed with the heart surgery.

Thank you for your continued love. Jaden I know, is feeling the power of all your prayers!!!

Gonzalez's Heart

We got to the hospital at 5am and took Jaden to start getting ready for his surgery. They took him back and would not let Sal go this time to be with him when they put him under. That was hard for me to know that he would be awake, alone and in a strange room without one of us. So we then came to the waiting room and have been waiting for the operation to start. They will let us know when they are ready to start. So far mom, dad, Mattie, aunt Robyn, tia Kelly, great aunt Diane, tia Wendy and tata Jose have been here. The volunteer in the waiting room has already learned we are an exciting and fun family. She asked if it was safe to offer Sal any sugar.

The anesthesiologist just came out to update us and let us know that they have been working for 80 minutes now trying to get all of his lines hooked up. They need to put one in his groin area to put blood through in case of an emergency. Both his groin vessels are occluded (blocked) so they are not able to put a line through it. So this is taking a long time and they had a specialist come from the hospital to help with the x ray machine to help guide him with the line. He also said that worse case scenario would be that they would put the line through his neck. They prefer not to do it this way. So the surgery will not start for awhile longer until they are able to figure out how/where to put the line.

Wednesday, November 08, 2006

Gonzalez's Heart

We had a really good confident nurse last night so I was able to go to the RMH comfortably. They do not have a place for us to sleep in the PICU and the family lounge was so full that someone had to sleep on the floor. I came back really early this morning and they said the night went good but that Jaden was a very light sleeper and woke up at least 5 times. They all held him and he went right back to sleep. The nurses all love him and always talk about how cute he is and "who would not want to come to work when they get to play with a baby like Jaden." That makes Sal and I feel so good. I also know he will be taken really good care of because he is so loved and spoiled here.

He overall looks wonderful and is doing very well. However, his sats are still a little low and the cardiologist has been concerned so they did some lab work to see if anything was going on that they could not see. Sara, to answer your question, they did have him on O2 and they actually had it higher then they normally do and it did not seem to help.

One of the residents just came in and said since we are staying at the RMH and are so close to the hospital that they are going to let us leave. So they will work up the paperwork and we will get to go. YEAH!!! Jaden and I will take the long way back and enjoy the day together. After all of this though, I was reassured how hard it is going to be after his surgery. Jaden is so active and wants to play with and explore everything. He will not want to be help down and hold still. He will get very angry. I am already knowing that.

So that is the good news for today. Surgery tomorrow AM. Pray hard.

Love to you all, Steph

Tuesday, November 07, 2006

Gonzalez's Heart

So today ended up being pretty hard. The procedure/surgery for the heart cath. went pretty well. The Dr. said that his artery was so small they had to go over the shunt in order to see what they needed. This is not done too often so they sent him to PICU which he will stay overnight. The Dr. had said that he is definitely ready for his surgery and if we had waited another month he would be a very blue baby.

So we went to extabate (take out his breathing tube) him and his O2 was sitting around 50% which was not good. They got very nervous and there was a whole lot of staff standing around his bed for a long time. They started talking about intubating him again and I told them that talk was not aloud in this room. We all laughed at my great comment through tears. After getting a heart cath. they need to keep his leg still and straight so they had him on a board. Because his sats. were so low they decided to take him off a few hours before they normally allow so he could sit on my lap. Finally after calming him down and getting him to rest, his sats. shot up to mid 70's where they are supposed to be.

He is awake and very uncomfortable right now. We are giving him a bottle but then we have to leave the room for a little because they are doing a procedure on another little baby. So I will be done for now and let you know how the rest of our evening goes in the AM.

Monday, November 06, 2006

Gonzalez's Heart

Jaden's echo, EKG and physical went well today. His O2 level was a little low though. Tomorrow we go in early for his cath. The Dr. told me today all of the possible problems that can happen when getting a cath. done but explained the importance of having it done. He also said he likes to see his heart babies stay in the hospital overnight due to the many issues that can occur. We will know tomorrow afternoon if we are having to stay overnight.

The kids are on their way here right now and had a pretty bad morning this morning. When they left last night, Ethan started crying really hard and told me I had to go home with them. It is amazing how much they understand what is happening. We give them to little credit. Lana will play with the kids all day tomorrow here at RMH. Hopefully they will not be to difficult for her as they are very over stimulated and on a sugar high here when here.

Keep the prayers coming, we really need them. Thanks for all of your love...

Sunday, November 05, 2006

Gonzalez's Heart

We are here at the Ronald McDonald House. We got a call yesterday afternoon saying that they had a room for us. So we packed up last night, finished this morning and headed down here first thing. We have already played in all of the fun areas and are about to walk by the river. We are in room 138. It is a great relief to know we have a room and will not have to worry about that. I had called Friday and they had no rooms and no expected departures. God answered our prayers and took that burden away from us.

Tomorrow is Jaden's echo and I think they will be doing all of his lab work, x-rays and we will meet with the cardiologist here. Tuesday we have to be to the hospital by 6:30 am and Jaden will have a cath. done. We will be on the 5th floor in a room until they feel he is ok to leave. If he has any bleeding from it he may have to spend the night. Let's pray for no problems. I do not want to have to spend the night there just yet. If all is well, we will go in for surgery Thursday morning. I will start updating daily or as often as I can to continue to let you all know the status with him.

Sal, the kids and Lana (our nanny) will be coming back and forth this week and then will stay Wednesday night until Sunday night. The kids are already off the walls and being very naughty. They definitely are being affected by the stress we are all feeling. It is already difficult and Sal and I have had to stop for quite a few hugs today. We are trying very hard to be positive and calm. Outwardly we are but the kids can feel our inward emotions.

So we are off to enjoy the river. Hope you all had a great weekend.

Love, Us