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Posted 2019-01-08T02:36:19Z

Update

Just one day shy of an 8 week hospital stay, we hav been cleared for discharge. To God be the Glory!

This experience has been so frightening but Chris Jr. beat all the odds. We’ve had an amazing care team despite our difficulties. I’m so ready to bring my baby home. He’s been through so much. Sadly, his journey isn’t over. We are already preparing for his next heart surgery. Our life for the next couple months will be extremely different but it will be worth it. Chris Jr. is going home on 12 meds, a g-tube, and a crazy feeding schedule. Thankfully, we have some resources to assist us with this transition. I have my baby home. My baby’s going home. We’ve literally lived in the hospital for the last 8 weeks.[...]

Posted 2018-12-31T04:32:51Z

Update

We haven't posted in a very long time.  It's been almost a month since our last post.  We have now been in the hospital for almsost 7weeks.  Honestly, we've all been traumatized from this entire experience.  It's hard seeing myson suffer and feel pain each and every day.  Every day there is a new test or procedure that needs to be done to him that causes him pain.  It also sucks that this will be his new norm when we go home. So here's an update:[...]

Posted 2018-12-02T04:23:51Z

Daddy-ness

Today is day 18. Deuce is doing a little better and we are thankful to all of his doctors and nurses.  However,  I think we need a break from the hospital, the staff, and pretty much eveyone. We just need a break. Somedays it seems as if we are going through CABIN FEVER especially with us being in the hospital. When Deuce is out of the hospital we will definitely be taking a vacation, a long vacation, maybe to a remote island just to get away. These nurses are driving me to my wits end for things that they are not taking seriously. it frustrates me to my core but I really have to leave in it God hands and rest in him.  It's really hard to focus on anything else besides him right now.  Even though it's hard to get sleep because I feel like we can't depend on the nurses we are assigned, we just have to trust God and rest.   [...]

Posted 2018-11-30T22:20:08Z

Mommy-ness

Today is Day 17 of our hospital stay.   Every day, Chris Jr. progresses. Yet, there is a new issue every day.  I love our hospital.  We've been with his medical team since I was pregnant.  However, this stay has become a nightmare.  Several times, I was told to look at Chris Jr. as a parent and not a medical professional.  Now, I feel like I have to monitor and oversee every single thing that's done to him.  I've dreaded writing this post but this has become unbearable.  Ever since Chris Jr's failed extubation, I've been concerned about his care.  I haven't had a good night of sleep in days because I feel like I have to constantly watch my son. Not only do I have to watch his health but I have to watch the nurses that interact with him.  I am truly uncomfortable and I've voiced my concerns several times. [...]

Posted 2018-11-28T07:05:00Z

Dad : Focus on the finish line

It has been so much going on these last couple of days from getting the MRI done and waiting for the results dealing with Doctors, Nurses and everyone in between, then getting the results that NO parent wants to hear: that their Baby had a stroke. That literally broke my heart once again knowing the damage that a stroke can cause.  After we got the news, we both held each other and realized this might be a long road ahead but this is what we signed up for:  loving a child through it all, ups and downs, and everything in between. I imedately called my parents and my father picked up the phone. The interesting thing about this is that my Dad had a stroke when he was 19 years old, in the prime of his life, and it was back in the early 70's way before a lot of the modern medcine of today.  The first thing he said was it's going to be okay and reminded me that God has this. So one thing that helps me is focusing on the finish line. We are going to have tough days. We are going to have trials and set backs but if I can just focus on the finish line-him one day running and playing and talking my ear off . If I can focus on how he'll ask me for advice about life and his first girl crush. Focus on the graduations, the accomplishments, and most importantly the future. We never know what our true finish line is but we do know that if we live our life accordingly-by being kind to people, loving on the loveless and enjoy the adventure along the way-you will reach the finish. When you reach your finish line, you will fill accomplished, fulfilled and daggone satified that you made it-made across the finish line.      [...]

Posted 2018-11-28T05:34:53Z

Update

The last few days have been very chaotic and emotionally draining.  Chris Jr. had an MRI and it took over 24 hours for us to get his results.  Meanwhile, he was started on 3 new medications and his fever refused to break. There was still no cause for the fever.  Every day, we did everything we could to keep him calm so that he wouldn't be continuously sedated.  Then it was time.  His medical team decided to extubate him.  This time I was ready.  I had my questions. I made sure they determined that he was alert.  I made sure that I spoke with the respiratory therapist before hand and made sure she knew what she was doing.  I asked about the equipment, the steps that were being taken to prevent any injury, and what would happen if they were not successful.  Chris Jr. was successfully extubated at 1pm on Nov 26.  He is not on any sedatives and he is fully alert/responsive.  We have a longggg way to go as far as recovery but we are hopeful.  His MRI shows that he had a stroke and has brain damage to two areas of his brain. It's called a watershed stroke and it was likely caused by his cardiac arrest. The areas of damage are near his occipital lobe so we are seeing that he has some visual issues.  Right now, his neuro team can not tell us if the damage will be long lasting but he was enrolled in the Cardiac Neurodevelopment Program at the hospital.  From a parent standpoint, it's still hard to see my baby struggling.  He's lost some of the voluntary movement of his eyes and he has a hard time focusing his eyes in specific directions.  He's unable to hold up his head due to loss of muscle mass.  He has also lost the ability to suck/latch so he's using a feeding tube.  Right now, we're going through a period of continued suctioning since he has built up alot of secretions due to his long intubation.  It's hard to see my baby who was trying to crawl, laughing, smiling, sitting up, and full of life now struggling to even turn his head. We know that he will get better.  We know that he will get stronger.  He's one tough kiddo. [...]

Posted 2018-11-24T21:32:48Z

Update

It's been 2 days since I've posted an update.  Every day is getting harder.  We've had so many setbacks since the day they tried to extubate Chris Jr.  My heart keeps breaking every day and I'm slowly losing hope.  Seeing my son struggle is the hardest thing I've ever had to experience.  Seeing him reach out to me and not being able to pick him up hurts.  Seeing the tears roll down his eyes because he's uncomfortable or in pain breaks my heart.  In the last 2 days, he's had his chest tubes and heart pacing wires removed.  They have decreased his sedatives because they want him to be a little more conscious.  This means that he is aware that he has a breathing tube down his throat and he constantly gags and even vomits.  It's such a whirlwind of chaos still and it is extremely frustrating.  They want him more conscious so that he can be better prepared for extubation.  However, when he is conscious, he tries to yank the breathing tube out, his vitals go haywire, and he ends up being sedated again.  That's his daily cycle.  He can't successfully complete his extubation trials because he is continuously sedated after moving too much. On top of this, because he was so heavily sedated and has been on opioids for almost 2 weeks now, he now suffers from opioid withdrawals.  Seeing his body shake and not being able to calm him was so difficult.  He is now being given methadone for his withdrawals.  Methadone.  My 6 month old son is on methadone.  That sounds so crazy to me.  We were told they had a set protocol in place to prevent opioid dependence smh.  He has also been battling a fever for the last couple days.  Today, his fever was as high as 103* F.  All of his blood and urine cultures have came back negative for infection.  He's been on antibiotics for 4 days now.  I know by now the doctors are annoyed with my questions but I really had to ask them- You're treating him for a fever but you have no idea what is causing it? The answer is yes.  It seems like we have less answers every day.  At this point, I can't even tell you what they're treating.  I know the focus is on his respiratory function and getting him off the ventilator.  So far, we've been told that they will try and extubate him again within the next 48 hours.   [...]

Posted 2018-11-22T21:56:27Z

Update and Mommy-ness

Last night was something out of a nightmare.  It constantly flashes through my head.  Everything that day went well.  Chris Jr. was awake and moving.  He was following us with his eyes. He was consistently being restrained because he was moving way more than they wanted.  Things were good.  My baby was responding to my voice, my touch, everything.  He successfully completed another extubation trial and the team was given the green light to extubate him.  He kept falling in and out of sleep so they wanted to make sure he was a bit more alert before extubating.  They said that they would discuss the process during night rounds.  For the first time, Chris and I left the hospital to get some food.  The food was delicious and it felt great to get some air.  When we returned to the hospital, we missed rounds but were told that the extubation was still on track.  I was filled with excitement that I would be able to finally hold my son again. Because they wanted him alert as much as possible, we played his favorite song, "Baby Shark".  We sang and danced.  Yet, he still kept falling asleep every couple of minutes.  In the back of my mind, I wondered if this was the right time to extubate him but the excitement of holding him overshadowed my doubts. [...]

Posted 2018-11-21T19:59:08Z

A Husband, A Dad, and A Servant's Heart

 *Dad's Heart*

My heart is overfilled will joy from the love and support of Deuce's village; we are forever grateful to you all. Through this trial my heart has raced, slowed down, and at one point it felt like it stopped all together. It stoped when I thought I lost him. It slowed when I thought he was out of the woods and then the Doctors saw something else. It raced when Deuce started moving for the first time in a while. All these emotions and feelings are wrapped inside me. I wanted to scream, shout ,and even sob. Yet through all theses emotions, God is still faithful and we are still standing.   [...]