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Posted 2018-11-21T06:35:14Z

Update

First and foremost, thank you.  Thank you for taking time to follow Chris Jr.'s journey.  Thank you for keeping us in your prayers.  Thank you for your donations.  We are overfilled with love and appreciation.  This has truly been a humbling experience and we can't wait to tell Chris Jr. about his village.  [...]

Posted 2018-11-20T03:37:18Z

Update

Baby boy is making progress!

Today is our first day of "Recovery".  Chris Jr. is done with his surgeries and procedures.  It is now time for him to just rest and heal. We are over 24 hours of being seizure-free. Last night and today have been relatively calm. He's off his paralytics, insulin, blood pressure medications, and one seizure medication. He will have a NG tube (feeding tube) placed tomorrow and will start receiving breast milk.  In the last 6 days that we've been here, I've managed to run out of space in our hospital freezer from pumping so much. My mom had to take a cooler home to store my over supply.  I am definitely happy that I am still able to supply my little guy with breast milk.[...]

Posted 2018-11-19T05:24:40Z

Mommy-ness

We received a lot of good news today.  Yet, in the back of my mind, my fear remains.  Yesterday, I shut down completely.  I wasn't able to interact with his medical team and it was so hard to even look at my baby.  I felt like giving up.  I felt like I had no more fight left.  I knew that I wasn't in the right state of mind so I decided to take a break from the hospital.  Neither Chris nor I have left the hospital since we checked in for the surgery.  My mother told me that our mailbox was full and that no more mail could be delivered.  I decided that it was a good time to leave since Chris' parents were coming to the hospital to visit.  The baby would still be surrounded by family and it would give me a little bit of time to clear my head.  As I drove home, I listened to Tye Tribbett and sang as loud as I could.  I'm sure I received so many stares especially since I was in standstill traffic for 90 minutes.  As I opened my front door, a wave of silence filled our house.  This was the first time I was in the house without Chris Jr. since we brought him home from the hospital.  [...]

Posted 2018-11-19T04:28:00Z

Update

It is now more difficult to decide when to post updates.  His health and status are always changing.  My last update I posted said that his CT scan showed that there was no bleeding on his brain.  The doctor who told us this information was incorrect. BTW, this is the SAME doctor who tried to tell me that I didn't know how to read the EEG smh.  The neurology team informed us that Chris Jr.'s CT scan showed that there was swelling and bleeding on his brain; a result of a traumatic injury.  He's had several traumatic injuries: the surgery, being put on bypass for a long time, cardiac arrest, CPR, and ECMO.  This morning, we had a consult with neurosurgery.  I felt like the life was sucked out of me as soon as they introduced themselves and I waited to hear even more devastating news.  Right now, they do not feel like they need to operate on his brain.  Their hope is that the blood will be reabsorbed and that the swelling will go down, a process that can take a long time to happen.  After they gave this information to me, they asked me if I had any questions.  They were puzzled when I said no so I had to tell them that I had my bachelors in Neuroscience.  The neurosurgeon's face lit up and he said he was glad that I knew what he was talking about.  The bedside nurse jokingly said that she wanted me to wear a badge with my credentials since I have alot more medical knowledge than most of the parents in the ICU.  She catches me from time to time doing my own assessments on Chris Jr. and she says that I ask questions way beyond the scope of a typical "parent". She repeatedly has to remind me that Chris Jr. needs me as a mother and not as his medic lol.[...]

Posted 2018-11-17T18:55:58Z

Update

This morning, we received some good and not so good news.  Deuce's team "round" twice a day: reporting any findings, new treatments, and goals.  We learned that throughout the night, his seizures worsened, happening more frequently.  Status Epilectus is when seizures occur frequently without any pause or time for recovery.  During the night, I notified the nurse that I was seeing weird readings on the EEG.  The attending doctor of the ICU said that I would drive myself crazy staring at the monitors because even he couldn't read the EEG.  I described in detail what I saw. The doctors didn't know about my medical/education background but it made me upset that he told me that I wouldn't be able to read the EEG correctly.  After hearing my background, he told me that I needed to look at Chris Jr as my son and not my patient.  I know that he was saying this to reassure me but it was difficult to hear.  I decided to take a nap. Lo and behold, when I woke up, it turns out that Chris Jr was having seizures during the exact time period I mentioned to the doctors.  He continued having seizures during the night.  It's a constant struggle hearing about my son's seizures.  In the Cardiac ICU, the team doesn't include a neurologist.  They are located on a separate floor.  Chris Jr's EEG readings are recorded but the process has so many holes.  The recordings are read on a separate floor by a separate team.  According to them, they are understaffed and aren't able to continuously watch his readings.  They check on his readings every 30-60 minutes.  If there is anything abnormal, they call Chris Jr's bedside nurse.  The bedside nurse has to relay this information to the attending doctor and come up with a plan for treatment.  When a treatment is decided upon, the order for the medication has to be put in the system, the pharmacy has to process it, and then they have to bring it up to his room.  It seems like such a long, excruciating process for an issue that may have long-lasting complications.  If it wasn't for me asking the bedside nurse to call the Neuro team when I saw the EEG readings, it would have been another hour before they looked at his readings again.  [...]

Posted 2018-11-17T10:04:17Z

Note From Dad

It's hard seeing your son lying on a table motionless: no crying, no laughing and no cooing. no attempts to try and roll over or sit up. Nothing. it's hard to watch my son who was progressing so well paralyzed by medication. My once happy baby lays on the hospital bed motionless with tubes and wires attached to his body and I wonder when will he get better; when will this nightmare finally end. Then I realize it's not our timing but God. If I am honest, I wish God could hurry and heal my son so that he could bring his laughter back, his cooing and even his crying back. I miss my Bubba, my Deuce, my partner in crime when we're getting on mommy's nerves. Until God heals him I will continue to wait and continue to pray. As my Grandfather use to say "if your going to pray don't worry but if your going to worry don't pray".  In other words , we have to have total faith that God is in control.     [...]

Posted 2018-11-17T00:16:15Z

Update 11/16

6 minutes.  That was the time given to us.  6 minutes.  Christopher had a seizure that lasted for 6 minutes. In the last 5 hours, he has had 3 seizures.  Our son is steady fighting for his life and all we can do is wait. When asked about the cause of the seizures, the only thing we received are speculations.  It COULD be the aftermath of his CPR.  It COULD be an injury his brain received while being taken off life support.  We do not have any concrete answers.  Because he is under heavy sedatives and paralytics, an EEG is the only thing that gives us information about his seizures.  We were told that a head ultrasound showed a "dark spot" in the right side of the brain.  Sometimes I want to yell at the doctors about having a degree in Neuroscience and wanting them to fully explain things to me.  A "dark spot"- that's not the scientifc term to describe what they are seeing.  But I know they are looking at me as a mother. I know that I am here as a mother and I have to trust Deuce's doctors.  It feels like a whirlwind of chaos sometimes.  We get good news but always brace ourselves for hearing the bad news later.  He is still here.  He is still fighting.  We are still waiting for answers.  [...]

Posted 2018-11-16T19:11:36Z

Update

Our son is the strongest person we know.  During the night, from 10pm-5am, they slowly weaned him off ECMO to see if his body would be able to tolerate it.  At around 9am, he was prepped to be completely taken off life support.  Although he is still intubated, he is now completely off life support. Our little boy is so strong and he is fighting.  Please keep us in your prayers.[...]

Posted 2018-11-16T06:26:55Z

God Doesn't Change: From Daddy

One of the hardest things to do is watch your son lying on the table motionless, watching Doctors, Nurses and other staff trying to revive him. his heart stops, his breathing stops and no one knew why. Watching this, I was in the same state; I couldn't breath but it felt like my heart was about to jump out of my chest. Because at that point, I thought I have or was about to lose a giant piece of my life: my son, my Deuce, my Heir. This process reminded me of a story that I really couldn't connect myself to but on Wednesday the 14th at 4:53 am I connected with that story on a whole new level. The story goes a man lost his son and he went from person to person asking, "Where was your God when my son died?" He went to another person and asked the same question, "Sir, where was your God when my son died?" Finally he came up to an elderly man and asked, "Sir, where was you God when my son died?" That man looked at the father as gently as he could and said with a voice of compassion... "probably the same place he was when his son died." What I got from that story is that God doesn't change when our situation changes. Relationships might change or even friendships might change but God wont change. He will always stick closer than a brother, Love us unconditionally, be a friend to the friendless and father to the fatherless. So no matter what was going to happen on that night, I had to remember: God won't change, God is here, God is with us and God is with Deuce. No matter what, God's got us.[...]

Posted 2018-11-16T05:10:00Z

Surgery #2: From Mommy

I am writing as a form of self-care.  For the last 6 months, I have been with my baby every step of the way.  Every doctor's appointment.  Every feeding.  Every nap. Every medication.  Everything.  I am now in a place where I have to wait and pray.  I have to let go and let God. I have to trust God that he will restore my child. [...]