ThE WaRnEr's: CODE.......

On May 20th at 6am after a LONG night of Ryker being beyond upset & holding his breath. The nurse & I were finally able to talk the Doctors into letting him get extubated. I knew that the reason for him getting so upset was because he was awake enough for him to realize that he had the same tube that he HATED before shoved back down his nose. And I can't say I blame him, I would be just as mad!

For the majority of that day he did AMAZING!!! He was finally able to sleep comfortably for long periods of time. I was so happy to see him so happy & comfy!

At about 5pm Jason got to the hospital to trade me (me go with the girls & him stay here with Ryker) I knew that I wasn't ready to leave Ryker, but I NEVER am ready to leave any of my kids no matter which end I am coming from!

My girls, Joan & Myself decided that we would go to a close by park so we could spend sometime outdoors before it got dark & as we were there having a great time riding bikes, playing at the playground & waiting in line for face paint, when Jason called me & said that things weren't going very good & I should probably head back to the hospital. I asked why, what was going on? & he said "Ryker just held his breath really bad, so bad that the nurse had to push the code button- Babe, it scared me so bad!" My heart went into a panic, I shouldn't have left! Why hadn't I been there?!!

By the time I got back to the hospital Ryker looked like his normal self & seemed fine. But my poor Husband did not! He was so shaken up by it all my heart was breaking for him! He said to me "I honestly thought that was the end, I thought he was gone....I was so scared!!" Hearing all that had happened made my stomach tie in knots....I wish so badly that I hadn't left, that I had been there for my sweet boy & that Jason hadn't had to go through that alone! But I know that I have to & want to spend time with my girls too, its just so hard! I have never felt so torn in all my life!

A little later after Jason had stepped out for a moment, Ryker's nurse came up to me & said "I feel horrible that your husband was here for that incident! It was so scary for me, I just cannot even imagine what he was going through at that moment! I am so sorry that he had to see that!" I don't know all that happened during this incident, Jason & I have talked a lot about it but I don't know that I would be able to handle knowing all the details! I have seen my sweet baby go through so much in this process, I don't know how much more I can take! That night Jason & I decided to have us both stay at the hospital with Ryker & Joan stayed at the hotel with my girls.

The next day we had two more of the scary "code" incidents..... It is the most horrifying & helpless feeling to be watching your sweet baby sleeping peacefully then suddenly out of nowhere he starts crying with his eyes still closed, then his cry instantly goes from soft to screaming, then within a matter of seconds the sounds of his cries fade away & his face turns from a soft pink to a dark shade of purple...then his whole body goes limp....and during this whole process I am holding up his head, patting his back & crying out his name begging him to please take a breath! Then before I know it everyone from the emergency team is running in the room pushing Jason & I aside so they can save our babies life once again. It is beyond words the feelings of helplessness & fear that runs through your body in this circumstance!! Just like so many other things that have happened through this process- I NEVER want to experience that ever again, especially so many times & so close together!

The next day Tuesday May 22nd Ryker had a pretty good night & I had just left his room for maybe 15 minutes to go pump. While I was away I posted on Facebook-

Ryker had a much better night last night. No more "code" spells (praying it stays that way!!) As long as he gets consoled instantly when he is upset he doesn't get into those not breathing spells. He still seems to be pretty uneasy & uncomfortable at times so I am trying my hardest to get them to allow him to eat today in hopes that hunger pains is part of the reason why he gets so sad at times :( He is also still on High Flow to help him breath, but this forces a lot of air down into his belly that we think is causing extreme gas....So between the no food & lots of gas he gets really upset where he cries so hard he forgets to breath. (because he is still getting used to the breathing on his own part) Please pray that he will have a better day today & that he will be able to get more comfortable so he can rest!

As soon as I got done posting this I walked back to Ryker's room only to see 10+ people gathered in his room. As soon as I saw this I ran down the hall to his room & asked what was going on. The EP (Electro Physiologists- aka Pacemaker experts) Team was in Ryker's room & they pulled me aside & told me that they were there doing a routine interrogation on Ryker's pacer when the interrogator sent Ryker's heart into something called "A-Flutter" Basically A-Flutter is when the Atria of a heart is in an arrhythmia of 300+ beats & the Ventricle is being paced normally. The scary part was that Ryker's Atria was beating at 400 beats per minute & they had tried all the normal things to stop it & it wouldn't stop. Obviously someones heart cannot beat at 400+ for very long so they had to do everything possible to try to get it to stop. So after many more tries failing the Attending Dr. came up to me & said "I am really sorry to tell you this, but the only way we are going to be able to get Ryker's heart out of flutter is to use defibrillator paddles on him." I had no idea what those were at the time & I wish I still didn't! They are the electric paddles that you see on the movies when someone goes into cardiac arrest & they have to jolt the person's chest with the paddles...life saving but horrible!

When I found this out I was a mess!! How could they use something like that on a tiny baby without it hurting them?? The Doctor told me the only way they could use the defibrillator paddles on him was to heavily sedate, paralyze & reintubate him. I didn't even know what to say, I knew that they had to do it but...NO!!! He just got extubated & off the heavy sedation drugs & now he has to go back? PLUS use electric paddles on his tiny little chest?? I was shaking...it was just too much! He doesn't need anything more! No more setbacks! I wished so bad that Jason could be there with me, I was so scared!

In a panic, faster than I ever thought possible, they got Ryker all sedated, paralyzed, & intubated. He literally had as many nurses and doctors around his bed as there possibly could be. It was such a surreal time with so much panic & people everywhere, I just stood there in shock watching helplessly.
The Nurse Practitioner (her name is Caroline & she is AMAZING!) saw that I was just standing there in total shock (I cannot even imagine the look on my face) & she came over to me, put her arm around me & walked me through every single second of everything that was going on. It helped me so much & she was so sweet about it, just letting me know how much she truly cares!

When they brought in the defibrillator my heart sunk in my chest...I never thought I would have to see them in person, let alone what I was about to see. And just the fact that they have tiny little paddles to use on babies just makes so so sad! Babies shouldn't have to go through all this!

One of the nurses came up to me as they were getting the defibrillator ready & said "Mom, you don't have to be here if you don't want to you know" & I said "I know, but I couldn't leave Thank you though" & she said "He is going to be fine, it's you that I'm worried about! We have given him versaid which will make him forget any of this ever happened, but your memory we can't wash clean after you see what your going to see & I just don't want you to have to go through that." I said "I know, & I appreciate your concern, but I am not going anywhere, I would feel 10x worse being away from him."

I stayed & I am glad that I did....but I do wish that I could wash away the images from my memory! It is just like they show in movies (not as big of an electric pulse on the babies as the adults) they charge the defibrillator & yell "CHARGE" then once its all charged they ask if the EP if he is ready & then they yell "CLEAR"........It's HORRIBLE!!!! It was the first time in my life that I honestly felt my heart come to a complete stop for a split second...I don't know if it was all out of fear, but as soon as the jolt went through my sweet baby's body- I felt it! It shocked my whole soul & I ached for him! Another unexplainable moment that I will never forget (although I would love to) in all my life!

It took about 20 minutes of tests to find out weather or not the defibrillator had worked, and Thank you God, it did! I don't know if I could have handled seeing that again!! After that they did a thorough sedated echo to get a good look at his heart & its function since the last operation.

Later Jason & I met with Dr. Marx after he had gone over the echo & his exact words were "Ryker's heart looks extraordinary!! His heart is functioning as good as it possibly can be with his anatomy!" YAY-YAY-YAY!!! It was the best news we had heard in a while! He also said that the AV valve that used to be considered "mild-moderate" leak is now "little to no" leak :) & that the PA band tightness is perfect! Thank you Dr. Marx & especially Thank you Dr. DelNido for being such an amazing surgeon!!!

After lots of tests & much needed rest for Ryker, he got extubated a few days later on the 24th. Since then he has been doing amazing! Today (May 29th) He is almost up to full feeds & tolerating it very well through his NJ tube. Just in the last two days he has been able to get his arterial line, his RA line & the IV in his arm all removed! Also, the majority of his meds have now been moved from IV to NJ :) I am so proud of this amazing baby boy! He continues to inspire & amaze me ever single day!! I love you more than words can say sweet Ryker!!