A heart beat away
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Hello,
My name is Justin Davis and on September 11 2018 my wife Julia and I were expecting a healthy baby boy. She started labor pains early morning around 2 AM. After 18 hours of labor when Jaxon arrived into this world we were devastated by the news that our son had a critical heart defect Super Cardiac Obstructed Total anomalous pulmonary venous return (TAPVR) that had caused him to be rushed to AI Dupont children’s hospital. His blood wasn't getting oxygen which was slowly causing his entire body to shut down. Before we could even get to hold him the first time he was boxed up, intubated, sedated and being transported to AI Dupont .
After having to leave my wife at one hospital because of her C-section and rush to another I waited 5 hours to finally hear our son was alive but put on ECMO essentialy life support. The hardest part was he also had to get surgery to repair his heart and we were told it was 50/50. He was able to make it through this operation on 9-13-18. After such they were able to get him off of the Ecmo Machine. But he was and is far from out of the woods.
During the first week of recovery after surgery we were told that Jaxon suffered Multiple strokes due to clots that had reached his brain. The initial diagnosis was that he may be paralyzed on his right side and suffer many difficulties. He was already having seizures and due to the surgery his whole body started to swell up. He wasn't urinating and was retaining far too much fluid. His kidneys suffered major damage and they were having trouble keeping his vitals up. There were times we were told there is nothing else they can do but wait .
They tried to start feeding him with an NG tube down his nose to stomach. Since my wife Julia had been pumping wanting to help we started on breast milk. All was okay until day two of feeds developed pulmonary effusions. Essentially fluid buildup around the lungs causing him respiratory distress. So we had to stop all feeds as it was believed he had a chylothorax. So he remained on TPN
After a few weeks after surgery they finally closed up his chest. He still couldn't be held up to this point and we It wasn't until he was 6 weeks old that we finally got to hold Jaxon. He had been on the ventilator for over 5 weeks and was just extubated a few days before 6 weeks old. He had a PIC line put in and the RA lines taken out. He was awake and seemed so eager to be held. All was looking up for us as he was doing better on his way to recovery.
Early November we started to try feeding him again this time it was a special formula for children with chylothorax Its essentially absent of any fats which exasperates the chyle leak. It seemed okay for a bit then he developed more effusions. We held off on feeds and had to up his oxygen support and diuretics to help get the fluid off It helped and we were able to resume feeds. All was going well until to Monday before thanksgiving. We got a call at 3 AM stating jaxon was in distress and he developed a brain bleed. We are staying at the Ronald Mcdonald next door so we came right over. They brought in a Neurosurgeon to pull some blood off his brain. He was better for now and we are closely monitoring
It is now December and we are still in the CICU at Nemours AI Dupont. Jaxon hasn't been able to take any feeds by mouth. He is breathing on room air with no support. Hes nearly off all his sedatives. Hes currently on the following medications
List as of 12-6-18
Morphine - sedative
Ativan - sedative
Pulmicort - lung steroid
Diuril - diuretic
Lasix - diuretic
Enalapril - valve leak
Iron - nutrients
Vitamin d - nutrients
Prevacid - reflux
Keppra - seizures
Phenobarbital - seizures
Zantac - reflux
Aldactone - diuretic
As of 12-6-18 Jaxon ultra sound showed that more blood has developed and his brain is being pushed over more that before. We are on standby to act but are monitoring closely to see what if anything needs done. They will either wait and see or have to do something more invasive.
We have a long road ahead for the recovery of Jaxon. Please keep us in your thoughts and prayers. I will keep his story updated for anyone who wants to read up.
12-21-18
We moved to the Step Down Unit called 2B. This allowed us to start sleeping in the same room as him and start providing 24 hour care. We stayed there every night with him and finnally got to know him well . We got a window into his 24 hour day rather than the 12-16 hours we usually saw.
1-2-19
Jaxon got Surgery today to have a G-Tube placed. This allowed an easy way to get food into him. Allowing us to finnally get the tube out of his nose. He continues to not eat by mouth although we have been trying to work with him to get past it.
1-8-19
We got discharged from the hospital and finally made it home! It was a great day and feeling welcoming our son home. We made a slideshow about it via facebook and Youtube below.
https://www.youtube.com/watch?v=QNFXk8_hPLg
During the first 2 weeks things were going great. Jaxon was fitting in and we kept working to give him therapy and such to get him caught up.
1-11-19
Jaxon met his pediatrician so they know whats normal for him. Since he has many complications they wanted to see how he looks and such . This allows them to know when they see him in the future what isn't his normal.
1-21/22-19
Monday Night-Early Tuesday Morning our night Nurse on her 7th day had a little accident with Jaxon. Her Sweater got caught on his Gtube extension and pulled his entire gtube out of his stomach. Completely an accident and could have happened to anyone Since it was such a new surgery this required us to rush him to the ER. We ended up being admitted to the step down unit. He had to go into the OR to have a procedure placed with the IR team to place the gtube back in. All in all we spent 14 hours at the hospital and Jaxon was not in the best of moods. After this we held off on nursing care and have been handling this ourselves.
1-31-19
Jaxon had his first Out-Patient Checkup with his Cardiologist , Nutrition, and Surgical team from Gtube. He had an EKG and an Echo while there. They were very happy with his weight gain so far. Everything else continues to be stable .
2-6-19
Jaxon had an appointment with the nurse at his pediatrician. He was approved for the synagis vaccine through the rest of the flu season. He had a shot right before discharge at the hospital and will get one more shot in March.
2-11-19
We are scheduled to have an EEG and see our neurologist on Monday. Then Tuesday see our Neurosurgeon in relation to his brain bleed etc.
I am not asking for donations but many people have asked me why I haven’t done this or how they can help . All I am asking for as well as our family is to pray for our son Jaxon. But we do know that our son will need a lot of things to help him in the future. So if you feel or want to send any donations or gifts we would greatly appreciated. Anything given even if it’s a simple get well card is appreciated . But if nothing more we are asking for all to pray with us for our son Jaxon. If you would like to send any cards please send to my mothers address as we aren't sure how often we will be home during this time. 26 Radley Run Elkton MD 21921.
We thank you for all your prayers
https://www.facebook.com/justin.davis.161
https://www.youtube.com/watch?v=QNFXk8_hPLg
https://www.cincinnatichildrens.org/health/t/tapvr
My name is Justin Davis and on September 11 2018 my wife Julia and I were expecting a healthy baby boy. She started labor pains early morning around 2 AM. After 18 hours of labor when Jaxon arrived into this world we were devastated by the news that our son had a critical heart defect Super Cardiac Obstructed Total anomalous pulmonary venous return (TAPVR) that had caused him to be rushed to AI Dupont children’s hospital. His blood wasn't getting oxygen which was slowly causing his entire body to shut down. Before we could even get to hold him the first time he was boxed up, intubated, sedated and being transported to AI Dupont .
After having to leave my wife at one hospital because of her C-section and rush to another I waited 5 hours to finally hear our son was alive but put on ECMO essentialy life support. The hardest part was he also had to get surgery to repair his heart and we were told it was 50/50. He was able to make it through this operation on 9-13-18. After such they were able to get him off of the Ecmo Machine. But he was and is far from out of the woods.
During the first week of recovery after surgery we were told that Jaxon suffered Multiple strokes due to clots that had reached his brain. The initial diagnosis was that he may be paralyzed on his right side and suffer many difficulties. He was already having seizures and due to the surgery his whole body started to swell up. He wasn't urinating and was retaining far too much fluid. His kidneys suffered major damage and they were having trouble keeping his vitals up. There were times we were told there is nothing else they can do but wait .
They tried to start feeding him with an NG tube down his nose to stomach. Since my wife Julia had been pumping wanting to help we started on breast milk. All was okay until day two of feeds developed pulmonary effusions. Essentially fluid buildup around the lungs causing him respiratory distress. So we had to stop all feeds as it was believed he had a chylothorax. So he remained on TPN
After a few weeks after surgery they finally closed up his chest. He still couldn't be held up to this point and we It wasn't until he was 6 weeks old that we finally got to hold Jaxon. He had been on the ventilator for over 5 weeks and was just extubated a few days before 6 weeks old. He had a PIC line put in and the RA lines taken out. He was awake and seemed so eager to be held. All was looking up for us as he was doing better on his way to recovery.
Early November we started to try feeding him again this time it was a special formula for children with chylothorax Its essentially absent of any fats which exasperates the chyle leak. It seemed okay for a bit then he developed more effusions. We held off on feeds and had to up his oxygen support and diuretics to help get the fluid off It helped and we were able to resume feeds. All was going well until to Monday before thanksgiving. We got a call at 3 AM stating jaxon was in distress and he developed a brain bleed. We are staying at the Ronald Mcdonald next door so we came right over. They brought in a Neurosurgeon to pull some blood off his brain. He was better for now and we are closely monitoring
It is now December and we are still in the CICU at Nemours AI Dupont. Jaxon hasn't been able to take any feeds by mouth. He is breathing on room air with no support. Hes nearly off all his sedatives. Hes currently on the following medications
List as of 12-6-18
Morphine - sedative
Ativan - sedative
Pulmicort - lung steroid
Diuril - diuretic
Lasix - diuretic
Enalapril - valve leak
Iron - nutrients
Vitamin d - nutrients
Prevacid - reflux
Keppra - seizures
Phenobarbital - seizures
Zantac - reflux
Aldactone - diuretic
As of 12-6-18 Jaxon ultra sound showed that more blood has developed and his brain is being pushed over more that before. We are on standby to act but are monitoring closely to see what if anything needs done. They will either wait and see or have to do something more invasive.
We have a long road ahead for the recovery of Jaxon. Please keep us in your thoughts and prayers. I will keep his story updated for anyone who wants to read up.
12-21-18
We moved to the Step Down Unit called 2B. This allowed us to start sleeping in the same room as him and start providing 24 hour care. We stayed there every night with him and finnally got to know him well . We got a window into his 24 hour day rather than the 12-16 hours we usually saw.
1-2-19
Jaxon got Surgery today to have a G-Tube placed. This allowed an easy way to get food into him. Allowing us to finnally get the tube out of his nose. He continues to not eat by mouth although we have been trying to work with him to get past it.
1-8-19
We got discharged from the hospital and finally made it home! It was a great day and feeling welcoming our son home. We made a slideshow about it via facebook and Youtube below.
https://www.youtube.com/watch?v=QNFXk8_hPLg
During the first 2 weeks things were going great. Jaxon was fitting in and we kept working to give him therapy and such to get him caught up.
1-11-19
Jaxon met his pediatrician so they know whats normal for him. Since he has many complications they wanted to see how he looks and such . This allows them to know when they see him in the future what isn't his normal.
1-21/22-19
Monday Night-Early Tuesday Morning our night Nurse on her 7th day had a little accident with Jaxon. Her Sweater got caught on his Gtube extension and pulled his entire gtube out of his stomach. Completely an accident and could have happened to anyone Since it was such a new surgery this required us to rush him to the ER. We ended up being admitted to the step down unit. He had to go into the OR to have a procedure placed with the IR team to place the gtube back in. All in all we spent 14 hours at the hospital and Jaxon was not in the best of moods. After this we held off on nursing care and have been handling this ourselves.
1-31-19
Jaxon had his first Out-Patient Checkup with his Cardiologist , Nutrition, and Surgical team from Gtube. He had an EKG and an Echo while there. They were very happy with his weight gain so far. Everything else continues to be stable .
2-6-19
Jaxon had an appointment with the nurse at his pediatrician. He was approved for the synagis vaccine through the rest of the flu season. He had a shot right before discharge at the hospital and will get one more shot in March.
2-11-19
We are scheduled to have an EEG and see our neurologist on Monday. Then Tuesday see our Neurosurgeon in relation to his brain bleed etc.
I am not asking for donations but many people have asked me why I haven’t done this or how they can help . All I am asking for as well as our family is to pray for our son Jaxon. But we do know that our son will need a lot of things to help him in the future. So if you feel or want to send any donations or gifts we would greatly appreciated. Anything given even if it’s a simple get well card is appreciated . But if nothing more we are asking for all to pray with us for our son Jaxon. If you would like to send any cards please send to my mothers address as we aren't sure how often we will be home during this time. 26 Radley Run Elkton MD 21921.
We thank you for all your prayers
https://www.facebook.com/justin.davis.161
https://www.youtube.com/watch?v=QNFXk8_hPLg
https://www.cincinnatichildrens.org/health/t/tapvr
Organizer
Justin Davis
Organizer
Chesapeake City, MD
