Our 19th Post; Since we've been Home

His John Deer from Clark and Alisha. Loooves it.

I know its been a while since I posted. Since leaving the hospital we have been home trying to keep Ayden from running all over the play. Hard for a 4 year old. He needs to be on a very low activity schedule for now until his incisions heal and the rest of the fluid in his lung, that had the whole, heals. We saw our Cardiologist yesterday (Dr. Kao) and got a good report. Although Ayden is swelling again, his surgery was a success. Everything seems to be working fine and she couldn't see any problems from the Echo we took yesterday. The swelling she believes is from Ayden's body thinking there is still something wrong so it swells as a defence mechanism. Its just taking his body longer to get use to having half a heart and more fake parts. Other then that he is doing very well. Grumpy from being swollen and all the medication he is on. Plus making him sit around the house all day isn't his ideal day as a 4 year old.

Cookie Bouquet from his Aunt B and Uncle K

 He says he's going to share with sis

He's got deer season on his mind.

Cardiologist Appointment yesterday

 During his Echo



Our 18th Post, Heading Home

I cant believe this but we are going to be heading home today. This has never happened before. Ayden has done so well even his doctors and surgeons are surprised. Thank you everyone for everything you have done for our family. All the uplifting words help our spirits out so much. We are just finishing up breakfast and waiting for our discharge papers. Already got out final beads for our Beads of Courage necklace. YEAH!!!

I just love this smile. I hate when I dont see it for a long time but love when it come back.

Our 17th Post, Its been busy and exhausting.

MONDAY

Yesterday we started early with the traumatic experiences for the day.

6:00 AM Ayden had all his chest tubes out and we also got the Central line out as well. Ayden was even unhooked from the pace maker but just not the wires to it. He still has those in his chest. For all this he had to be drugged heavily.

Also on that day we had to have a Wound Care Specialist come and see us. Ayden's skin has decided to become allergic to the tape that they use for surgery and afterwards and he has broken out. He also has a huge sore where the pace maker box was taped down. So we had to take all the tape off and redress everything and get on some steroids.

TUESDAY

Tuesday morning Ayden's gas came back lower then they expected from his blood work taken earlier. Usually to get blood from Ayden they would just get it from his central line so he doesn’t have to get stuck. Well since he got his central lines out this means he had to get stuck. Not once but twice because his blood was clotting. UGG!!!!

But to reward him we took a trip off the Cardio Unit in a wagon. First stop was outside, maybe hoping he could escape. Then on to the caterpillar; next stop - of course - the cafeteria. He wanted to see all the food. Fun stuff! Then he went to the playroom and found the trains, tools (where’s the hard hat?) trucks and even bowled!

By the time we go back to our room they wanted us to pack up and move out of Cardio and up to recovery - so excited! This is a BIG step closer to leaving here.

All packed up and ready to go to recovery

To recovery floor we go. Our new room is 617D!!!

WEDNESDAY

This morning I have already talked to the nurse and she was going to be talking to Dr. M about getting these pacers out ASAP. If we get those out there is a good chance we could leave here TODAY.

I can’t believe it.

Our 16th Post, No Holding Him Down.

It's Saturday, I think and I am so sorry for the time between my last post. It has been a couple of eventful days with Ayden. He is still looking great, especially after his blood transfusion he had yesterday. It brought back his nice pinky color. He is also on no oxygen at all and breathing fine. He still has a hole in his lung that is causing it to fill with fluid so we keep trying to make him walk to work alot of that fluid out. He hates to walk yet he has been attempting to climb and sit up and get down from his bed. Which is not good since he's still hooked up to about 20 different things. So now Trav and I are on a shift schedule right now since someone, besides the nurses need to be in the room at all time for fear of Ayden breaking free. As soon as I get my laptop up here I am going to work on posting more pictures of him. Thank you everyone for all your prayers and thoughts and positive words.

Our 15th Post, recovery begins.

It's a new day and he is madder then he could ever be. Over the night he slept very well. They were able to take out one of his chest tubes that drain fluid from his lungs. This afternoon they are hoping to take out his RA line which is an IV that goes directly into his heart. As soon as they can get that out he can try to start drinking again. His blood pressure is up and down but we are able to manage that with medicine. He does still have some oxygen running through his nose and he seems to be breathing very easily with that. He still has a drain in for the other lung and a drain for his heart. Not sure when he will be getting that out because he is still drain quit a bit. All in all he looks good. We are just wanting him to rest as much as possible. It's hard for him to do that because his body is already so use to all those pain meds and sidation meds that they don't really work on his for very long. He usually goes thru those meds with in 5 to 10 minutes. I really hope to get pictures up here soon. That is my next thing to do, find a computer and upload pictures. Thank you again everyone for all the prayers and positive thoughts.
Also I was just informed that this blog only send out the updates over night and not everytime I post. Ugh sorry abou that.

Our 13th Post, HE'S OUT OF SURGERY.

He's out if surgery!! 8 hours later and the best part about it is he was able to breath in his own this time. He has never been able to come out of an open heart surgery without a breathing machine. So this is great news. He is getting situated in the PICU for the next hour or so with his nurses. We should be able to go back there to see him soon. He will be sleeping for the next day atleast.

Our Twelfth, still mopping up.

Well he is still doing great but Dr. M is still mopping up. Which means cleaning him up on the inside before they can close him up. He is having to do alot more mopping up then normal just because of his previous surgeries and plus this surgery being so long. We are going on the 7th hour now, but everyone here is still doing good.

Our Eleventh Post, heart is beating again!!

His heart is now beating again and he has been coming off the heart lung bypass. After that they will "mop" up and start the closing procedure. Maybe another hour or so.

Our Tenth Post, nurse came out for another update.

The nurse Cathy came out for another update. Ayden has now been on the heart lung bypass for about 40 minutes now and is doing great. They are now starting to sew close his tricuspid valve and after that they will place the long tube that bypasses the right side of the heart.

Our Ninth Post, Nurse came out

The head nurse Cathy came out to give us an update. They made their first insition at 8am and they are still going through scar tissue. It may be another 10 to 15 minutes before they can get all the way through and go onto the heart lung bypass. But other then that ayden is doing great they said.

Our Eighth Post, Surgery.

They took him early this morning then they had originally planned. He was given goofy juice and his Anastasiologist carried him back to the OR. Ayden didn't have a care in the world. We won't hear from anyone in the OR for about an hour and a half. Still expecting the surgery to take around 5 hours or less hopefully. So far Trav and I are doing good as well.

He had just gotten his "goofy" juice right here.

Our Seventh Post, Pre-ops at Medical City

Pro ops are done. Dr. M wants to start alittle earlier in the morning tomorrow. We are going to be getting to the hospital about 6am and Dr. M wants to get started about 7:30 this time. When we spoke to Dr. M he really seemed confident about this surgery. And it made Trav and I calmer just speaking with him again. We are as ready as we'll every be to get this done and on with our lives. Thank you again for all your prayer and positive thoughts. They really do help Travis and I.

P.S. As soon as I figure out how to post video I will post the videos from last nights Pickin for Preemies Concert where Ayden sang on stage twice. Rock Star Style with his favorite Bart Crow.

Our Sixth Post; Game Changer

I believe I am in a better place today. For all his surgeries I am usually calm, cool and collected but for this upcoming surgery, my mind has gotten the best of me. After finding out we were changing our original plan (removing the old pulmonary artery and valve for new ones) everything I was "okay" with, just kind of fell apart in my head. I wasn’t able to talk myself through the procedure and it make sense to me or to Travis.

So yesterday we had a meeting with Ayden's surgeon. My parents, Travis and I met with Dr. Mendeloff at 2pm and discussed in detail what he will be doing. I have included a picture that shows what will be done but I will also describe it too. I hope everyone will understand it - but I know it is very complicated.

First, Ayden will no longer need a pulmonary valve and conduit. Dr. M will be closing up that opening into the heart and removing the conduit and valve entirely.

Second, since the Tricuspid valve has never grown since Ayden was born and since there are not mechanical valves small enough to replace it with, Dr. M has decided it is best to go ahead and close up the valve for good. He will re-route the blood that comes in to the right atrium from the lower part of the body by using a long Gortex tube (a graft).  This will be attached to the Inferior Vena Cava below the heart – reach across the heart and be connected to the Pulmonary Artery – close to where the former pulmonary conduit was connected.  Once this Gortex Tube is in place the whole right side of Ayden's Heart will be shut off permanently. It will still be viable – blood vessels will feed it – but it will not control the blood-flow from his body into his lungs.

As for the muscle that separates the two bottom chambers, Ayden already has a small hole in the very bottom that lets to two different bloods mix. Once Dr. M stops all the blood from coming in to the right Ventricle he may open up another hole to keep blood from building up too much pressure. He will make that decision once he is already in surgery.

On a more positive note, if Ayden adjusts to this new way of blood flow and shows positive signs that his body likes all these changes - then there is a good possibility that Ayden not have to have another Open Heart Surgery. The Gortex tube will be large enough to last through adulthood. Of course he will have some routine maintenance as he gets older and will always have check-ups.

It is hard not to get our hopes up - but we have never heard that before so I am just keeping every piece of me crossed that Ayden does well through this surgery and recovery.

His surgery is still set for next Wednesday the 7th. Surgery will probably start around 8 am or 9 am but we will find out the exact time the day before during his Pre-Ops.

Please don’t forget to put your email down at the very bottom of the blog so you can get the update sent to your email instead of checking for updates.

Our Fifth Post, Pictures From the Beach

We are HOME!! Wish we were still there because it is one of the best places we as a family can go and have tons of fun all day every day. The kiddos saw Dolphins and snorkeled and we went out to dinners and played in the sand and HAD A BLAST. Here are some pictures from the week. (If your wondering who the other kiddos are in the pictures and other adults are too, we always meet up with some very close friends of the family and spend the whole week together. They all have kids around the same age as Makayla and Ayden so the kids really can get adventurous.



This is all of the kiddos that came with our group.

The Adults enjoying the afternoon

We rented some boats and headed out to Crab Island one day

Ayden stayed at the front of the boat the whole way there and back

All-in-all it was a great trip. Travis and I did hear back from our Cardiologist and our surgeon on the issue with his Tricuspid Valve last night. They are both agreeing that they need to completely get rid of the Tricuspid Valve by sewing over the whole valve so it is no longer functional. This valve will not grow and it's too small to be replaced with a mechanical valve. This means that Ayden will only be functioning with one side of his heart from now on. To keep the non functioning side from dieing, it is my understanding that they are going to be removing the patch they gave him during his first surgery that separated the two bottom chambers. This will allow the blood to flow freely back and forth in the bottom chamber to prevent the muscle from dieing. Here is a diagram.



Surery is still set for September the 7th but are still going to be doing tons of fun things till then. Ayden will be joining Bart Crow more of some Texas Country Signer at Billy Bob's Texas on Monday, September the 5th for Pickin for Preemies. Ayden is a huge Texas Country fan and plays his guitar all the time. Excpecially to Bart Crow, Joey Green, 1100 Springs and he has just found a new love for Max Stalling.

We are so thankful to be able to do this for him. I just love to catch every single smile he has on his to offer and this is going to bring a big smile to his face.

Our Fourth Post, The Beach

We have been having a great time here. Ayden and Mak are having a blast. I can't figure out how to post pictures from my phone in here but as soon as I do I'll post some.

Our Third Post (Doctor's Visit and Vacation)

We officially got the OK from Dr. Kao to go on vacation. She thought everything looked fine for now and she has no worry about him being gone. He is pumped!!

                                               

During the appointment the Echo showed that his leakage was worse. After his Echo, the Cardio, Dr. Kao told us, she did not like his Tricuspid Valve (always been a problem).  Dr. M. (Surgeon) has been waiting for the valve, his heart and Ayden to grow before he did anything.  And when we talked in Dr. M in May he was not wanting to do anything to the Tricuspid Valve.  He thought that with the new pulmonary artery and valve - between the two valves he would be okay.  But something might have changed - Dr. Kao said it is just too small and not working well at all.  Well, the problem is, Ayden's body does not like these artificial "tissue" parts and it has rejected them all.  So we will be just asking for more trouble (we think).  The alternative is a mechanical valve and they are HUGE. So we are waiting for Dr. Kao to talked to Dr. M and see what they decide.  My guess is they won't do anything this time.  The other alternative is the fontan procedure where all the blood is redirected from the right side of the heart permanently.  No one wants to see that happen - at least not yet!  I have added a picture of the two thing that might be happening during the surgery.

The long blue tube in the middle is what they are defiantly taking out and the Tricuspid Valve that I have circled is what is too small and not sure yet if they want to take it out or not tohut it off all together. We hall see. In the mean time....... WE'RE GOING BACK TO THE BEACH!!!

Our Second Post

Whats Been Happening since Ayden's Birth and First Surgery

After this first open heart surgery (OHS), Ayden had 5 minor surgeries; 2 sets of tubes in his ears, Digestive Scope because for his serious reflux from being intubated so many times at such a young age, and 2 heart catheters to explore any damage in his heart that was caused by surgery.

During the year of 2009 Ayden was increasingly sick. His immune system was very weak because his heart was in congestive heart failure. Ayden’s body creates calcium deposits and scar tissue in the places that stitches were done to hold his pulmonary conduit in place. The scar tissue was blocking his valves and not allowing the blood to flow through properly and there was a good chance the valves were too damaged to be fixed.

We were then again put under quarantine and not allowed to leave the house. Travis and Makayla would have to strip down every day at the back door and go straight to the shower. Clothes were washed immediately. His surgeon wanted to schedule another open heart surgery to fix the scar tissue but we just needed to stay healthy until surgery day.

During Ayden’s second OHS, Dr. M replaced the artificial tube from his very first OHS (pulmonary artery) with a cows jugular - AMAZING!!! (Or as the medical world likes to call it -Bovine valve).  Also, Ayden had some other issues with the tricuspid valve in the right Ventricle that he wanted to try to fix but was unable, so Dr. M did a Glenn Shunt procedure.  This means his blood was permanently rerouted and puts less pressure on the value and heart.  Estimated time of the surgery was 5 hours but it took 7. A lot better then 9.

Since Ayden’s last OHS he has done very well. It’s amazing that when you see him you would never know how sick he was or is. He has never let his condition slow him down.

But unfortunately just this past May we didn’t receive the best news at our routine cardio check up. Ayden's pulmonary valves are narrowing with scar tissue which is causing the tricuspid valve to work overtime. Also, the second artificial artery has failed-it seems like Ayden’s body seems to think of this as something foreign and attacks it.

Ayden’s cardiologist, Dr. Kao said Dr. M wants to do another OHS & replace the bovine conduit & valve that he put in, in January 2010 w/ a pig conduit or porcine valve, but this time using a Gortex conduit. Ayden seems to be rejecting these other types of conduit / valve by calcification or scarring.  After speaking to both Dr. Kao and Dr. M we are allowed to wait until Sept 7th to the do the surgery. Travis and I didn’t want Ayden in the hospital all summer and as of right now he is healthy enough to do anything he wants as long as he stays healthy. Dr. Kao has been keeping a close eye on him through frequent appointments and as of today he has still been doing very well. His blood pressure has increased some, and he is staring to swell in his face. We have raised a lot of his medication levels to keep everything under control.

Right now we are focusing on our vacation to Destin, Florida soon. It will be a nice family vacation to relax and have a blast. We are already starting to pack.