He's Off ECMO!!

Well we are trying it ONE more time. We are really really hoping today is the day because we are running out of options, and unfortunately my sweet baby can't live forever on a heart/lung machine. His brain is bleeding due to ECMO is which causing more and more brain damage by the minute. We did a trial before taking him to the OR to make sure he was pretty certain to come off. I kept everything in my body and held my breath throughout the whole trial praying & hoping he'd tolerate it which he did, so that mean my baby boy would wheel down to the OR for one more time.
We wheeled our baby down, said goodbye, and walked back to his room. These last 3 times have been harder than ever because there are very high chances our surgeon could be coming back to report, "Your baby is gone" I'm scared to death. I hate those words & I don't ever want to hear them. Our surgeon is such a stud. We REALLY like him. He came and chatted with us before he went in to start. He just talked to us about the same things and told us how likely DEATH was at this point. He was hopeful we'd get him off.
They let us stay in Tytan's ICU room this time instead of going back to the surgery room. The surgery room is hard especially in a time like this. Most of the people in there are having simple surgeries. Not many are in there wondering if their child's heart is still beating. I think they all knew the chances of our little guy not surviving, so they wanted to keep us in a secluded area in case of they had to give us "that talk".
About 2 or so hours after sending our baby off, our life savor Rusty, our surgeon, came back with good news. They were successfully able to get Tytan off Life Support. What a relief! My baby boy's heart was now keeping him going without a machine. We were still nowhere safe but it was an absolute HUGE step in the right direction. Our little man was soon wheeled back to his room with one less machine.
I am so grateful for a loving Heavenly Father who is answering our prayers and allowing us to see miracles in our sons life.

He's off ECMO!

Look at all those machines keeping our tiny little guy going! So grateful for Modern Medicine!

BAD NEWS

I'm so sick of hearing bad news that I could puke. It seems to be never ending around here for Tytan. Just when we feel like we can take a breath someone else comes and drowns up with bad news. When you are on ECMO there is always a chance a bleeding on the brain due to the blood thinning products you are on to keep the circuit from clogging. Tytan had a head ultrasound every day Friday-Monday and it showed there was no bleeding on the brain. Well that good news was short lived. We found out today that Tytan is bleeding on the brain which means more brain injury/damage. They will do another head ultrasound tonight and if the bleed has increased he will have to come off of ECMO immediately. If it is at a standstill they feel safe enough to leave him on for a bit longer and try to get him off tomorrow.

As far as Jordan and I go, we are absolutely exhausted. We haven't slept in days. We feel helpless. We have prayed more in the past 6 days than we have in our entire lives. I have fasted for what feels like 40 days straight. I am drained emotionally, physically, and mentally. Every inch of our boy is practically covered, so we can't even touch him. His blood pressure rises when I talk to him, so they even told me I have to limit talking to him so his body can rest. We miss our boy. We miss the boy we handed over to the surgeons. We know he will never be the same and that thought alone kills us, but we are willing to do whatever it takes to keep him here with us. He continues to fight, so we will too!!

Little Miracles

Even though we feel as our whole entire world has fell apart the past few days, we are witnessing little miracle and tender mercies from our loving Heavenly Father. I know he is there and he is listening. We have so many prayers answered in our behalf over the past few days. Today was a wonderful day for us. We got to see our sweet little boys baby blues. Our sweet lil' boy continues to amaze us!! Last night he woke up & open his eyes for quite awhile when I was talking to him.... It made my entire week He also started some movements in his legs and fingers, actually so much movement that they had to give him more sedation meds. (he can't move much with the life support cannulas in his neck). Today we were scheduled to go back in the OR to get off support but we have hit another bump in the road. His left lung is collapsed AGAIN, worse than it was last night:[ Please pray we can get this lung back up & our sweet boy off life support!! Please keep praying for our lil' man! He is defeating many odds right now because of all the fast & prays in his behalf!

2nd Attempt = Unsuccessful

Today he took a trip down to the Cath Lab. They were unable to get him off ECMO... He's not giving up & either are we! He is out of surgery and things went smoothly. They cleaned out his sano shunt in his heart and his heart functioning is excellent again BUT they were unable to get him off ECMO (life support) today because now his left lung is collapsed. They think his lung collapsed when they unplugged the ventilator to take him downstairs. They're going to work extremely hard to get that lung back up in the next 24 hours and is scheduled to go back in the OR tomorrow morning to try to decanulate from ECMO!! Please pray that his lung will recover so we can get him off!! Please please keep the prayers coming ......Heavenly Father is listening & miracles are happening!! We are so overwhelmed with the love & support we have recieved!! Thanks everyone & keep it up!! Tytan is fighting for us all:))

First Attempt = Unsuccessful

Our Lil' Miracle Boy is still holding on & fighting with all he has! Everyday he amazes us more with his strength! Saturday was an extremely rough day... His left lung & partially his right collapsed on him. He has fluid around both lung, so they put him on a new ventilator and inserted chest tubes. He also started having really bad seizures according to the EEG which means there may be Neurological damage from CPR, but we will not know until he is off life support & stable enough to go down for a MRI. Sunday was a better day for all of us, including Tytan. They were finally able to get his seizures under control with meds and his lungs are started to look a little better. Today is a BIG DAY for our sweet boy! He will be going to the OR later today and try to be weaned down on the ECMO machine (life support). Again, we appreciate all the love, support, and prayers from all of you!! The power of prayer is real, and we are seeing it more than ever before. Please continue to pray for Lil' Tytan & especially a special little prayer today as he goes in for yet another operation!! We are far from being out of the woods and it's a constant rollercoaster for us. No matter what the outcome will be we are in for a long journey but we do know miracles are happening, both big & little!! We love you all and have the best families and friends in the world!! And one last thing for me... Rock those babies just a little longer, hold them a little tighter, and give them another kiss! Time is such a precious things & tomorrow is never promised!! Nothing matters more than your children! I can't wait for the day I get to rock my lil' man again & he isn't hooked to a million machines!

Tytan is back in the OR and the surgeon Dr. Eckhauser just come met with us. To be honest, it was really hard. He doesn't sugar coat anything and doesn't have much hope for Tytan. We appreciate his honesty but it makes reality that much harder hearing the truth. He told us all the risks of getting Tytan off and the chances of him dying in the OR is very real. They won't take Tytan off ECMO unless they are for sure he can thrive because Tytan and his complex anatomy only has once chance on ECMO. Cross your fingers it works so we can start moving in the right direction.


We just spoke with Rusty (the surgeon) and it was unsuccessful. They said within minutes of clamping him off his oxygen saturation dropped down into the 60's. That low wouldn't sustain him, so we will try again tomorrow. He will be going to the Cath Lab to check his conduit and make sure he's receiving sufficient blood flow. If that doesn't work we are running out of options. Please please pray for our boy!

September 14th

We are still very unsure of his outcome, but we are seeing little miracles!! For having CPR for over an hour most of the doctors didn't think he would make it through the first night and he did! He is still on life support but fighting like crazy to improve! He's making baby steps all the time! Today his blood pressure has improved. He has both a diastolic and systolic. He hasn't had one of those since Thursday. They would like to get him off ECMO tomorrow if they can get his heart to recover enough to be without it. We are so proud of our Lil Tytan and feel honored to be the parents of such a strong sweet lil guy! His will to live is beyond words! He NEVER gives up! Even though we feel our whole world has came crashing down we are still so blessed! Thank you all! We love you all!! Please continue to pray like crazy! Tytan has a long hard road ahead and needs everyone to continue to cheer him on!! Thanks again for praying for "our miracle baby"!

We met with the Cardiac team today and Tytan will be listed for a new heart by Sunday. I always dreaded of the day when we heard the words he heart is wore out and never imagined it would be so soon, but I pray that their is a little heart out there waiting for him. We are desperate and will do anything at this point to keep our little man here with us.

9.12.13

9.12.13 has taken the cake for the absolute worst day in the history of my life. I never thought I would ever in my life experience the things that have taken place today. It has been a horrible, horrible, nightmare that I am praying I wake up at of. As you all know Tytan went in for surgery today. He was scheduled first case, so we walked down our starving baby to hand him over once again. I cried and it was hard, but not as hard as it was last week. I even mentioned to Jordan it wasn't as hard this week. I told him I'm not as worried and can't wait to hold him in just a few hours. I never in a million years expected our day to end the way it did. We handed our little man over at 7 AM and was told it would take 3-4 hours. They told us they would give us updates periodically and well they didn't. We heard from them for the first time at 11:00 and they told us things were going good, but it would be a few more hours. My parents came up and brought Az, so we played with her to try and keep our minds busy. We stayed in the room with her, took her to the play room, had lunch, and walked the halls. At about 2:30 the nurse came in and said they needed to clean Tytan's room upstairs and we needed to get our stuff out because after surgery he would be monitored in the CICU. I asked them if they would please call down and see how Tytan's surgery was going. At this point he had been in surgery for 7 1/2 hours. They said they were about done, Tytan was tolerating things well, and they should be finishing up in the next hour. As you can imagine at this point we were dying. My heart was skipping a beat and I COULDN'T wait to hold my sweet little man. We waited in the surgery waiting room until we FINALLY got the call to go speak with the surgeon.
At about 4-4:30 we met with Dr. Sarrel. She said things went really well, but the surgery was unsuccessful. They found out Tytan has multiple extra pathways and they were unable to ablate all of them because of where they were located. They did slow a few of the paths down though. She said how unique Tytan's heart was and that they only see a heart like his once in every 20-25 years. She said it was very interesting and showed us some pictures of his heart. She said Tytan tolerated it great, and they were just getting ready to take him upstairs to the Cardiac ICU. She said we would spend 1-2 nights there and go from there. It was such a relief and I was SOOOO excited to see my little man. We actually raced up the stair running through the hallway to meet our little man. We probably looked like 2 little kids running through the halls. Little did we know as we walked through those doors our lives would change FOREVER. We would never again laugh and be truly happy like we just were walking down those halls.
As I walked through the doors I had over the intercom, "CODE BLUE" I looked at one of the nurses and said, "Greg, that isn't my baby boy is it?" All he said is "I don't know but I would run down and see what is going on." I ran downstairs faster than I ran up them, but this time their was absolute fear in my heart instead of happiness. I ran in the Cath area and Dr. Adam Ware (formerly from Nephi) met me at the doors. He didn't have to say a word. I knew it was my baby. I knew he was gone. I said to him, "He's not gone yet is he?" He simply said, "Not yet. They are doing CPR now and doing all they can to bring him back." I instantly fell to my knees and pleaded with the Lord out loud.... NO, NO, NO Please don't take him yet. Please let me keep him longer. Doctors, Nurses, RT, and millions of other medical staff flooded the room trying to help. When I finally came to and back to reality I couldn't stop shaking. I asked Dr. Ware if he would please get in there and give my baby a blessing. I just knew that he needed a blessing. After waiting about 10-15 minutes I asked Adam if I could see my baby. I knew I couldn't touch him but I just wanted to see him. I wanted to know he was there. I wanted to make sure they were doing all they could to help him. Adam was very good to give us updates every few minutes. He got permission for me to come in and it was not what I was expecting. It was awful. It is like a scene from a bad movie that is constantly on repeat in my head. There were more people than I even imagined. My sweet little boy's limp body was laying on a large OR table limp & lifeless. Three men were taking turns doing CPR and with each compression blood would squirt from his incision. I kept thinking how can I hand over such a perfect happy smiling baby and return to this. After about 5 minutes I couldn't take anymore. I couldn't watch them torture my baby any longer. As I was walking out the ECMO circuit (life support) was entering. They would be hooking MY BABY up to a heart and lung machine. How could this really be happening?
 As I went back in the imaging room I see my poor 23 old husband with his head in his lap and eyes filled with tears. He said to me, "Babe he's taking our little boy home. We need to call and tell our families to get up here, so they can come say goodbye." I will never forget the fear and heartache in his eyes. My husband is tough, so tough, and very seldom cries. When he does I know things aren't good. We made calls to our family and continued to wait. Dr. Ware was so awesome and constantly updated us. Finally after 55 minutes Tytan was hooked up to ECMO and they would be transferring him to the CICU.
An hour later we finally got to see our little man, but it wasn't the little man we handed over and NOTHING could have prepared us for what he was going to look like. Another Nightmare. To be honest I didn't know babies looked this bad ever in their life. He was purple, cold, and covered in cords, blood, and IV's. It was pure chaos around him. He earned himself 3 nurses and a doctor in his room at all times. They were constantly drawing blood and chasing labs trying to get his vitals up. They were transfusing blood bag after blood bag into him. My heart was broken. My body was in shock. My mind was scared. It was happening. The thing I worried and worried and worried about since the day he was born was really happening.
Finally Adam came into the room with a Echo Tech and was able to give Tytan a blessing. It was the most beautiful blessing I have ever heard. I don't remember the exact words, but I will never forget the spirit in the room after that blessing. My body was overcome with such peace and I just knew that he was going to be okay. It wasn't his time yet and the Lord was aware of our needs. Even though I felt some peace it didn't make me any less scared. It was the longest night of my life. We got no sleep and received bad news after bad news. Jordan and I found ourselves in constant prayer pleading with our Heavenly Father to spare our baby boy's life.
Here are some pictures of Tytan. Beware they are hard, very hard!

E.P Mapping & Ablasion

Our sweet baby boy is still in the hospital! They have decided they need to intervene with all this arrhythmia stuff. If he had a healthy heart this wouldn't be a big deal because he could tolerate it, but a single ventricle heart can't tolerate these things at all. They are very dangerous. He will be going in for another surgery tomorrow morning to fix his newest heart issue so the SVT episodes will stop hopefully! A normal heart only has one conduction pathway for a beat to pass through, but Tytan's is different. Tytan's heart developed an extra pathway (nerve) for the electricity to flow through that cause these SVT episodes and his heart to beat at a racing 270 bpm which can throw him into Cardiac Arrest & his heart to stop:(( So tomorrow an Cardiac Electrophysiologist Surgeon will be going in and mapping his extra pathway and do a cardiac ablation if the extra nerve is not too close to the original pathway. Tytan has been a trooper through this all & continues to meet & greet every doctor, nurse, surgeon, etc. with a smile. He attitude amazes me and gives me strength to find joy in all this whether its fun or not just like he does! He's my hero! He is a special little guy with a very special little heart. Please say a special prayer for Tytan and the wonderful people who will be working on him tomorrow during surgery. Thanks for all the love, support, and prayers that have been said in behalf of "our miracle boy"!! He will also be having his big open heart surgery with they will do his Glenn procedure and a valve repair on September 30th, so please keep praying for him often!!




Also here is a little more on the procedure he is having done tomorrow:

More than likely, your doctor has recommended that you undergo cardiac ablation(also called catheter or radiofrequency ablation) because other treatments for your arrhythmia have not given you the relief you want. In cardiac ablation, the electrode delivers a low-voltage, high-frequency current that removes the heart tissue responsible for the arrhythmia. Most people who have a cardiac ablation experience either:

*A long-term reduction in the number of episodes of arrhythmia and the severity of symptoms, or

*A return to normal heart rhythm

This means that, after successful cardiac ablation, you may be able to stop taking medication for controlling heart rate or rhythm, or you may be able to reduce the amount you take. Do not modify your medications without consulting your doctor. Cardiac ablation is considered safe and is not associated with a significant risk, so the chance of experiencing complications is very low. The electrophysiologist (EP) will discuss any particular risks with you before the procedure. The procedure always begins with an electrophysiology study.






Mapping

Catheters (thin bendable tubes) are introduced into the heart via the circulatory system. One such catheter is special and is referred to as a 'mapping catheter'. This mapping catheter has a tiny electromagnetic sensor in its tip. This sensor communicates with the 3-D Electroanatomical Mapping and Ablation System in an EP lab and then by moving the catheter around the heart, the electrophysiologist creates a 3-D picture of the heart. The 3-D picture, or 'map', tells the EP detailed information about how the heart looks and where the electrical circuit is broken. The technology used is almost identical to the GPS technology used in navigation systems that we use every day in our cars.








Ablation

Once the EP has created a 3-D map of the heart, he or she can maneuver the catheter to certain areas where the electrical circuit is broken. The EP then uses an electrical impulse and neutralizes these small areas of the heart tissue that generate and conduct abnormal electrical activity, giving rise to the irregular heart rhythm.




The whole procedure (including the EP study and mapping) may take several hours.

Life in the Hospital

Well our sweet little man is always full of surprises. He did so good all day and night Saturday. On Sunday they decided to let us go home. We decided to go to church at Primary's first, and we were greeted by a nurse at the end saying our little guy had went into SVT again, and we would be staying there a few more days. So once again I walk into my baby's heart rate 2 times what it should be reaching 260. They try the Adenisene, the bigger dose, and luckily it worked. After a few hours Tytan was back to his normal happy self.

They discussed Tytan and decided it was too risky to send him home where we live 2 hours away, so we will be staying here until surgery which is September 30th. They are trying to move that up though! On Monday they did move us out of the ICU to the CSU, so we have a little more space and freedom on this floor. Tytan is such a trooper and happy as ever. The two of us just hang out all day every day then big sister and Grandma come up once a day. Daddy is back to work and only here on the weekends. We are so grateful for his good job and hard work.

I love this boy!!

Even on these hard days when I am asking why I still have so much to be grateful for.... I'm extremely grateful for this sweet little boy and the lessons he has taught me in 5 short months. I am even more grateful Heavenly Father has trusted us with such a sweet little perfect prince!! I'm not sure what the future holds but I pray this little man will be around to teach us for many years!

Another Bump in the Road

Seriously, anytime I feel like Life is too good to be true the Lord has a way of humbling me and bringing me to my knees real fast. We have never had any major problems with Tytan since we brought him home, but today we experienced one of the scariest things ever. Tytan earned himself a helicopter ride and another sleepover here in the ICU.
Tytan didn't sleep very good from about 4:00 on he was fussy, and I was tired and just praying he'd sleep. Finally at about 6 I decided I'd give up and go sleep with him in the recliner. He was still super restless and fussy. Around 7-730 my mom was burping him and he began to projectile vomit then suddenly turned blue. My heart stopped and I knew I needed to get him hooked up to monitors and oxygen. I hooked him up and couldn't believe what I saw. He o2 sats were in the 60's and his heart rate said 235. I looked at Jordan and said that can't be right. We got oxygen on him and grabbed the stethoscope for Jordan to count his beats. His eyes got big and he said ,"It's right-- It's beating so fast I can't count them" I called PCH and they said to call 911 and get him there ASAP. I called 911 and told them we needed an ambulance right away and life flight waiting so we could get to Primary's. I explained Tytan's condition and told them he could be in failure and it was crucial to get there asap. I will never forget walking back and forth from our room to the front porch. Jord was holding our poor sweet lifeless little boy with fear in his eyes. Tytan was breathing but he wasn't moving much and was blue in color. It took what seemed like forever to get an ambulance here. They finally came and did nothing more but grab him, the car seat, and told me to get in the car. We left and was going 95-100 mph the entire way to Nephi. I was in the front seat and kept pleading with Heavenly Father to not take my baby yet. They didn't say much and I could tell they were scared as well. When we got to Nephi I lost it as I seen Life Flight waiting. I feel to the ground sobbing and again pleaded with the Lord. They let me ride life flight with Tytan and it was the LONGEST 25 minutes of my life. I could tell it was serious when they put the pads on to shock him. I was dreading the moment his heart stopped. At that moment, all the questions flooded my brain, "Will I ever take him home?" "Will his sister ever hold him again?" "Will he ever smile at me again?"
Security met us at the pad and took us directly to ICU instead of ER. What a relief it was to have our team of doctors waiting for us and to throw their arms around a young mother dressed in her jammies scared to death as she watches her little man fight for his life. They immediately swarmed him and started diagnosis. They ran an EKG and realized he was in SVT. They decided to sedate him and try a medicine called Adenisene. This med actually stops the heart for 1-2 seconds and then the heart restarts. So the prep and put in an IV. They do the first dose of Adenisene and NOTHING. So they double the dose and try it again. It works, thankfully. His rate is back to normal and he is in Sinus rhythm.
After life calmed down, they informed us that Tytan not only had an anatomical defect but also an electrical defect called Wolfe- Parkinson- White. It is where he has extra electrical pathways in his heart, so his heart can go into these scary arrhythmia. They will treat him with meds and hopefully we won't have this happen again.
We will be staying in the ICU again until they tell us otherwise. Please keep this little man in your prayers. He is needing them right now. After a few hours of recovery Tyt started to act more like himself. He was starving and gulped it down then threw it all up. So now we are trying it again just a little slower. So grateful this boy is back in my arms.

Pre-Glenn Cath

Tytan had his pre-glenn Cath on Friday. Things went relatively well with only a few minor hiccups. We got up bright at early and had to leave the house by 5:30. We had to check into surgery by 7 and the procedure was at 8. Our poor little man was absolutely starving because he couldn't eat after 4 AM. He cried and cried and cried. Finally he cried himself to sleep with a warm blanket until we handed him over. Our cath surgeon is Dr. Mary Martin. She seems awesome and did a really great job. The hardest part is handing over the little man. I cry every time and even though I have to do it a million more times in his lifetime I have a feeling it won't get any easier.
We waited about 4 hours for him to get done. Between the Ronald McDonald Family room and the Surgical waiting room we kept ourselves entertained. Finally we got the call he was done and to come to the Cath lab to talk to Dr. Martin. She said things went pretty well. They weren't able to go through his leg so they had to go down through his neck. The good news is he is a perfect candidate for the Glenn. The downer is he has a blood clot in his leg and no pulse in the right side leg, so we earned us a few days in the ICU again.
Our sweet boy had a hard time waking up from Anesthesia. He was grumpy and hungry. They finally let me feed him and cuddle him and he was all better. His hemocrit count was low so they decided to give him a blood transfusion to help with his blood count and oxygen saturation. The blood clot wasn't getting better, so they started him on Lovinox. What does that mean? Lovinox is a blood liner in a shot form, so my sweet boy has to have a shot in the belly every 12 hours :( And who has to give them? This momma. If you ever told me I would be giving my baby shots I would laugh at you. I hate needles. I hate to hurt my baby. But this little boy is teaching his momma that life is tough and we can do hard things. So I guess that means I will put on my big girl panties and give him his shots because after all it is what is best for him, and I want nothing but the very best for him.
We spent 2 days in the ICU and had awesome nurses. They let me sleep with him at night because that is what he is used to doing. We are now home and Tyt is back to his happy little self. And big sister is SOOOO glad to have him home! Thank you for all the prayers and your concern!

Our Family Pictures 2013

I know we just had pictures taken with my family, but I wanted some of our own before Tytan's 2nd surgery. Jord thinks I am crazy and just wasting money, but I know there are risks with Open Heart Surgery and I would regret it forever if we never had the chance to have family pictures with Tytan. Once again weather didn't cooperate with us. It was windy as heck but we managed to get some. I love them. Thank you Jammie for capturing these sweet photos. O and Tytan...Isn't that the cutest smile ever hands down?