It's been a while since I have updated but better late than never!
On February 21, at an appointment with Dr. Dhunnoo it was decided Ryker needed to be readmitted due to heart failure. While I had knew this was coming it was still upsetting to have to go back to hospital. He hadn't been acting like himself so it was almost a relief to get the problem sorted out.
We had to go through emergency around 1130am and it wasn't until 8pm that we finally got a bed in peds cardiology.
The next few days consisted of tweaking Ryker's medication to get everything at a good level for him. He did desat a couple of times each night when he slept but nothing too alarming.
Finally they decided that his medication was just right, and on February 24 we got to go home. I was so excited! Just in time for grandmas baby shower the next day!
We had a great time at the baby shower, it was so nice to show Ryker off to people that haven't met him.. he sure is loved!
The next day Ryker slept ALL day which wasn't like him. I even had to wake him for feeds which NEVER happens. I knew this was a sign of heart failure. We played it by ear and kept a close eye on him. When Monday evening rolled around and I noticed his nose starting flaring again (another heart failure symptom) I decided to call the cardiologist on call and see what he thought we should do. He told us it sounded like Ryker was maybe getting a cold, so to keep an eye on him and if he got worse, or not better to bring him to emergency.
After that Ryker perked right up so we thought it would be fine to keep him home for the night and see what homecare had to say the next morning when they came to visit.
TUESDAY MORNING:
After a checkup and a long talk with Lois, Rykers homecare nurse, we decided the best thing to do would be to bring Ryker to the hospital. I am so glad I did because everytime he would fall asleep he desatted to the 40s-50s and required oxygen.
A few weeks beforehand his cardiologist told us that they wanted him to go for his surgery way sooner than we had thought because his heart failure was getting worse, so after two trips to the hospital in one week it was decided that Rykers name would go on the surgery list, and he would stay in hospital until his surgery.
Within the next few days we learned that Ryker was to have surgery on Monday March. 5. As the date grew closer, I grew more anxious. I was so excited that he was getting surgery finally, but so worried because he was still so little and the risks were higher.
Monday morning rolled around and we found out the surgeon had to take an urgent case first thing so we were bumped to the afternoon. Then 2 oclock rolled around and we found out the surgery was cancelled. I was heart broken and frustrated. I felt like they didn't think he was important.. but I know that was not the case. The surgery was now to be on wednesday.
Wednesday morning rolls around and we found out the surgeon had to take a quick urgent case first thing so we were bumped up AGAIN. I was so frustrated. I thought we would be cancelled again, but to my surprise at 10am they told us it was time to go.
There was lots of tears, kisses and cuddles. I got to ride with Ryker in my arms on a stretcher down to the pre-op holding room with Nana, Brad, Ashley, And Cara following close behind. We met the nurses and each gave Ryker one last kiss before they whisked him away.
Walking towards to PICU waiting room I felt good. I just knew his surgery would go amazing. There was no doubt in my mind.
The next few hours seemed to fly by surprisingly! Dr. Rebeyka came out and motioned for me and Brad to go talk to him. I was so worried because I thought the surgery was going to take way longer.. but I didnt have to worry because he told us the surgery went as well as he could have hoped. I started crying, thanking him over and over again. He told us not to jump for joy just yet because the first 24 hours after surgery are crucial and anything can happen... but he really didn`t think there would be complications.
We were all so excited. Hugging and crying happy tears. I couldn't wait to see Ryker!
We were anxiously waiting for them to wheel his bed past, and when they finally did I jumped straight in the air and headed towards him. He looked so good!
For the next hour they needed to do some post op tests and we had to wait in the waiting room. Finally a nurse and called for us. We stood up and rushed in the unit to his bedside.
There were lots of doctors around him, deciding what the medication levels should be at, and just generally watching over him. Just then a doctor noticed a bad heart rhythm on the monitor, so they quickly hooked Ryker up to a pacemaker. I knew ahead of time that some children require a pacemaker for a little while after heart surgery so I wasn't worried.
Suddenly Ryker's blood pressure started to drop. The doctors spent the next five minutes tweaking his medication and the pacemaker. My guy fought, and he fought hard.
Unforunately he couldn't fight anymore and the doctor said "okay, this is real. grab the crash cart"
I jumped out of my chair and ran to the corner of the room and collapsed. I looked up to see doctors swarming around Ryker, and one woman giving him CPR. My whole world was crashing around me. I started having an anxiety attack.
A nurse came, grabbed me by the hands and said
"He is very sick, and we're doing everything we can to help him. You need to take deep breaths and I'll take you to the quiet room and call whoever you want me to"
I managed to choke out "I need my mom and my best friend".
The door was open when we were walking to the quiet room and my mom and Cara saw the nurse holding my hands as I struggled to breath through the tears. They both jumped up and ran to me. In the room the nurse explained to them what had happened and then left us to go see how Ryker was doing. I sat staring at the wall, not wanting to believe this is true but no matter how hard I tried to forget it, the words "you're going to lose him" would not leave my brain.
We called Brad's mom, Lori, and his sister and told them they needed to come back to the hospital as soon as they could. When they got there we all just sat in silence, waiting to hear news.. any news.
After what seemed like forever the doctor came in and told us they did CPR for 6 minutes and gave him one shock before he came back spontaneously on his own. I know the angels told him it wasn't his time.. he needed to stay with us. He explained to us that Dr. Rebeyka was on his way back to the hospital and they were going to open his chest to relieve the pressure on his heart.
We got to see him one last time before we left.. and he looked good.
We later found out that a coronary was compressed restricting bloodflow to his heart. We were told he would probably have a rough night but at least he was stable!
The next day we got up bright and early and headed back to the hospital. Ryker looked so amazing! They told us he had a great night and that to look at him now, they would never think he went into cardiac arrest the night before.
We were so happy to hear that! I could not stop smiling, my little fighter wouldn't give up.. he cheated death and he made it through.
Today is day 3 of his recovery and he is doing amazing! They have already closed his chest and have plans to extubate him tomorrow. He is completely off Epinephrine and there are weening him off his other drugs too.
Ryker is my hero, from now until forever. I have never known someone so strong in my life. We cherish every moment we have with him because we never know what tomorrow will bring, but after witnessing him fight for his life there is no doubt in my mind he will get over these hurdles and we'll be able to go on with the rest of our lives.
"Live every moment like its your last"
It is now 8 days since Ryker's surgery and he is recovering beautifully! He is off his pacemaker, and most medications. His heart is still showing a bit of blood surrounding it on his chest xray, but he is on lasix to try and get rid of that extra fluid.
