Support for Phoenix's Cardiac Recovery Journey CHD

Hello friends, family, everyone on the internet,

We have created this GoFundMe account to raise funds to get our family back on our feet and moving forward as we continue to support my son’s medical conditions. My wife and I were blessed with a happy smiley little boy, and we want to cherish every moment we have with him, as we have had to watch him overcome a myriad of medical complications since birth.

At 8 months of age, together we have spent 6 months of them at the Children’s Hospital in Los Angeles. Phoenix is a Heart Warrior, he is the toughest little bundle of joy. We still have many more doctors appointments and surgeries to go, but with your contributions to our family it would ease our financial burden and give us more time to be with our son every moment through his fight with CHD Tetralogy of Fallot (congenital heart defect).

Our story:

In 2022, Klelie and I fell in love with plans of marriage and having a happy home. From the beginning we had a common understanding that our fertility odds were low, and we were okay with the love between us being enough. We planned a small wedding with close friends, only to find out the week before our wedding that the love of my life was pregnant. Despite the odds, Phoenix began his journey.

At 22 weeks of pregnancy, doctors gave us the diagnosis: CHD Tetralogy of Fallot (congenital heart defect). My wife and I had to endure the fact that this was a High-Risk pregnancy, with increasing NST and Cardiac scans, approaching a planned C-Section at 39 weeks of pregnancy.

During this time period I had to let go of being a long haul truck driver. I knew I had to be there for my family. I began to work as a Rideshare driver to increase my flexibility with the increased amount of weekly doctor's appointments, and to be ready should any emergency arise. At that time our financial situation was stable, with zero to minimal debt, everything felt under control.

We made it to 39 weeks to our scheduled delivery October 3rd, 2023.

We were gowned and ready to enter the delivery room before our anesthesiologist realized that my wife would have to be put under for the delivery, due to the fact that she had metal rods from a prior scoliosis surgery, and I would not be able to be in the operating room.

As I sat in the waiting room, unable to be with my wife and child, the feeling of disbelief and unceasing helpness began. I wished that I could be there for both of them.

Not long after, I was notified that mom was okay and that Phoenix would be in the NICU, being evaluated, and that I would be able to meet him. From the moment I saw him and spoke his name, it was like he knew me, like he recognized my voice. Hearing his cry was both reassuring and concerning because he has now begun his recovery journey.

After his assessment, I spoke with his cardiologist and referred Phoenix for an immediate transfer to Children’s Hospital in LA. Just as the early diagnosis said, he was born with a hole in his heart (Tetralogy fallot) with an addition of a hiatal hernia, a vascular ring, narrowing in the esophagus, oxygen saturation low, and excess secretions. Within 45 minutes he was onboard his transport to CHLA.

My wife was coming out of sedation at that time and was unable to see Phoenix before getting transferred, she was not able to see her newborn son until she was discharged 5 days later. I immediately went to CHLA to oversee his transfer and admittance. Things began rocky from the start. I felt like my heart was going to explode but I was glad that he had all the care he needed; yet at the same time I was thinking how devastated my wife was not being able to be there for him.

Phoenix settled into the NICU and I was finally able to hold and comfort him. I would split my day between being at CHLA and spending the night with my wife at the delivery hospital while she recovered from her C-Section.

She needed assistance while she recovered, postpartum wasn’t easy considering the circumstances. At that time relationships with close family were mended and we were able to have some help while she was away from Phoenix.

During this time, Phoenix went through several scans and tests to assess his situation. We would meet daily with his team of cardio, pulmonology, endocrinology, genealogy, and pediatrics discussing any progress, concerns, and plans along with his list of challenges.

First round procedures were a BTT shunt placement in his heart, removal of a vascular ring, and a hiatal hernia surgery plus G-Tube. With a room full of various medical equipment, racks of IV’s and plasma bypass machine hooked up to help him pump blood, it was not easy to be at his bedside and not try not to shed a single tear.

It was difficult seeing him go through this, and just the thought of knowing he’s going to need another open heart surgery months later was too much to process. From his hiatal surgery he had a Gtube placed, to receive his food and medicines. At this time his secretion issue was delaying progress, the narrowing in his esophagus would impede his ability to pass any phlegm and would require suctioning around the clock.

Phoenix was able to heal from his recent surgeries, but the secretions continued to be a burden keeping his blood saturation up. In the process of getting his saturation levels back up Phoenix began convulsing. While the neurology team was placing nodes to monitor him every stimulation was triggering seizure activity. One of the scariest days he had to endure. The team was able to manage the situation and fortunately he hasn’t had any seizures since, but he will continue to be on anti-seizure medication. As a parent it was a traumatic experience to witness, to the point that any movement would make us uneasy.

Continuing onto the secretion mystery. At one point, Phoenix was administered botox to control the flow, but that did not work either. There is a patch that is intended to help with motion sickness, but it turned out the side effects were thickening his secretions. After continuous trials, he landed on a quarter patch dose of scopolamine, but the road to find the right dosage was not easy.

It came to the point that he needed to be re-intubated because he was not receiving enough oxygen, and with a full patch in effect it had made his phlegm extra thick. Thick enough to clog his breathing tube, leading him to go into cardiac arrest and to be resuscitated. That day alone was a peak and a valley.

With time Phoenix recovered and the team was able to manage his secretion issues, dodged a trachea. Phoenix remains on 1 liter of oxygen. By this time we had spent 5+ months in the hospital, spending our birthdays, Thanksgiving, Christmas, New Years, and our wedding anniversary in the hospital, but we were more than happy to be with our son. We were oriented on all of Phoenix’s needs and released from the hospital, happy to finally be going home with our son.

Going home with a medically complex baby is no walk in the park. Phoenix needs 24 hour round the clock care. He is hooked up to oxygen 24/7, feeding via G Tube every 4 hours, and currently a total of 20 syringes of medication administered daily. Through this learning curve we became his personal nurses, from drawing up one medication at a time to now being able to prepare a week's worth of syringes. After a lot of practice I have been able to cut my prep time down to 2 hours.

With Phoenix’s current needs, we had to reconfigure our room as a pediatric office, fit with white boards, measurements, schedules, and daily oxygen logs, in addition to usual baby routines. A lot of physical therapy to catch up on his growth goals since he had a late start, spending 5 months in a hospital bed covered with wires and tubes.

Being out of the hospital however doesn’t mean we’re out of the woods, every week we have 2-4 weekly follow up appointments with his cardiologist, pediatrician, endocrinologist, neurologist, and pulmonologist, making our schedule real tight.

The first time we were discharged we spent one month at home figuring out routines and made many changes to reduce preparation time. It took a lot of practice. In order to get him outside for his appointments was another learning curve, knowing how much oxygen supply to bring, prepping feed bags and pump for G-Tube feeding, preparing bags of medicines to keep his strict medication schedule, and THEN the typical baby essentials bag.

At about a month of being home Phoenix began having cold-like symptoms. Not taking any chances, we took him to the ER, he was discharged the same day. At that moment we didn’t know we had to mention his critical airway, so we returned only two days later and Phoenix was readmitted to the hospital.

Phoenix’s narrowing in his esophagus compromises his airways, so a simple cold for him is anything but simple. Anything that will cause swelling in his throat is critical. We spent 2 and half weeks admitted.

Discharge #2

Being home again, we started by preparing his weekly supply of medication and making sure everything was stocked. We continue with follow ups with his several specialists. By this time we felt confident in ourselves going outside our room, and going out together as a family - with all our supplies in tow.

Another month went by, time to revise meds and refills. We were missing 2 refills for GI meds. One of his specialist appointments was overlooked over the course of going in and out of the hospital. We had doctors appointments that week that we were able to discuss and that he may not need them after all if he’s holding up, forwards to a few days later and we felt that something was off. We had an appointment with his pediatrician to get refills on Monday, but we didn’t feel comfortable with his level of discomfort so we went straight to the ER. In the process Phoenix caught a cold again (RhinoVirus).

By the end of week Phoenix’s cold had escalated his oxygen support to 15 liters and was still struggling to maintain proper blood saturation. Once that wasn’t enough, the team had no choice to intubate before he codes and really needs it. He was intubated for a week and a half. Under heavy sedation, seeing your baby covered in cables, when his eyes opened, empty. Reliving past traumas of what has happened to him from previous intubations (cardiac arrest/Seizures) the fear of it happening again is always in the back of your head.

It took several days for Phoenix to lean towards needing less oxygen support. It was several days of good/bad days to the point that the team began talking about the possibility of needing a trachea put in. Once Phoenix was able to be stabilized, the team were relieved that he didn’t need one. We understand it can be a “fast,” solution to open up the airway, but we needed to give him time to recover from the constant need to be suctioned nasal/oral, which can also induce trauma to the airway. It took a while to find a good strategy with the Respiratory team to balance his needs along with a recovery plan. Once back onto a nasal cannula and weaning of sedation drugs, withdrawals. For a week it is a battle between fevers, discomfort, delirium, and the need of a lot of comforting.

Once things were under control and Phoenix was stable, the team was comfortable with proceeding with a CT scan to plan his next heart surgery. We have a consultation June 20th to see if Phoenix is ready or needs a bit more time to grow. Because Phoenix has spent a lot of his life in a hospital bed and immobile for long periods of time he is about 2 months behind a healthy baby's progress at his age, so we make sure to spend time giving him physical therapy and all the support he needs to catch up with his growth goals.

Fortunately we were able to receive help from Ronald McDonald House LA to help us have a place to stay during his hospital stay and we will be back there again for his next heart surgery. Our family has been a big emotional support, even taking care of our dog these last few months when we had to be away from home when Phoenix is in the hospital.

It has now been 8 months, originally we were hoping it would only be a couple months and we’ll be able to resume a “normal” life, but every case is different and in Phoenix's case, he had a list to tackle. We are now getting close to his next procedure and we couldn’t be happier to see Phoenix’s progress, but we are drowning in debt now because of our current situation.

I am currently trying to work as much as possible to get our finances back on track. I am glad I was able to be there for my family when they needed me the most, because if I were out on the road hundreds of miles away, I don’t know how we would have handled it.

I am thankful to everyone who has reached out, asked how me/wife/son are doing, listened to me cry, cried with me, and offered any help to reach out. I am hard headed to try to do this on my own, but at what cost? Over time it has become increasingly difficult to keep up with rent, car note, and ever increasing minimum payments. Our GoFundMe goal would get us back on track financially to continue supporting Phoenix journey through this difficult time.

On behalf of my family and I, thank you for your support/share, we will be posting updates on Phoenix’s progress through this journey.