Dear Mr. Sparks,
Our son Jacob is a one-year-old who has been ventilator-dependent since birth. He was born with a congenital diaphragmatic hernia at St. Luke's Hospital in Houston, TX and immediately taken next door to Texas Children's Hospital. Jacob's condition had been diagnosed during an ultrasound when I was 18 weeks pregnant. Jacob was placed on nitric oxide, which prevented his needing ECMO. His diaphragm was repaired when he was two weeks old. It was discovered at this time that Jacob had no left lung due to the abdominal organs being in his chest and suppressing it's growth while he was in utero.
Jacob had many ups and downs, but the doctors and nurses never gave up doing everything possible to help him recover. At 3 ½ months, Jacob had a tracheotomy because it was evident he was not going to come off of the ventilator anytime soon. He was having to be restrained prior to this surgery due to extubating himself repeatedly. The trach was a blessing because Jacob was able to begin physical and occupational therapy and had so much more freedom to move around. Jacob had a G-tube placed while he was in surgery.
Over the next few months, many attempts were made to get Jacob onto a portable ventilator so he could come home. He did not respond well at first but eventually, the settings he liked were discovered, and Jacob was on the home vent. He was still unable to come home because reflux caused Jacob to turn blue many times. His airway would collapse onto itself during these episodes, and it would be very difficult to bag him. Jacob had a fundoplication done in April, which helped significantly. He came home on May 14, 2001, after eight months in the NICU and had an episode that very night which resulted in his return to the hospital. Lucky for us, he was readmitted to the NICU since he was gone for less than 24 hours. We were comforted by this because he knew the doctors and nurses there and vice versa.
Jacob was released again on June 13, 2001 and has had one trip back to the hospital due to his fundo slipping and reflux causing him to begin turning blue again. He stayed in the PCU for 2 ½ weeks, where his feeds and meds were adjusted, and he has been fine since.
On October 4, 2001, Jacob was able to come off oxygen for the first time in his life! We are so excited and hope that his next visit to the pulmonologist will result in some of his ventilator support being weaned. We know this will be a long process because he is working to build up enough reserve to survive on his one lung. He is growing very well, and we are encouraged with his progress.
Jacob does not eat by mouth and does not like the taste of food. He will go to the Feeding Disorders Clinic this month and hopefully will learn to eat by mouth. He receives physical and occupational therapy due to developmental delays. Jacob has severe hearing loss and wears hearing aids. He does not like wearing the hearing aids so we are working on that. A speech therapist recently began teaching us sign language and is helping Jacob learn to communicate. His speech is very delayed, but we are confident that he will catch up quickly with the help of the therapist. Jacob is doing great and is the light of our lives! He is a happy little boy and enjoys going places. We take Jacob for walks around the neighborhood, at the mall and anywhere else we can go that is safe for him. We are very fortunate and thank God everyday for Jacob.
Sincerely,
Jacob's mom, Donna Crowley (Texas)
Our son Jacob is a one-year-old who has been ventilator-dependent since birth. He was born with a congenital diaphragmatic hernia at St. Luke's Hospital in Houston, TX and immediately taken next door to Texas Children's Hospital. Jacob's condition had been diagnosed during an ultrasound when I was 18 weeks pregnant. Jacob was placed on nitric oxide, which prevented his needing ECMO. His diaphragm was repaired when he was two weeks old. It was discovered at this time that Jacob had no left lung due to the abdominal organs being in his chest and suppressing it's growth while he was in utero.
Jacob had many ups and downs, but the doctors and nurses never gave up doing everything possible to help him recover. At 3 ½ months, Jacob had a tracheotomy because it was evident he was not going to come off of the ventilator anytime soon. He was having to be restrained prior to this surgery due to extubating himself repeatedly. The trach was a blessing because Jacob was able to begin physical and occupational therapy and had so much more freedom to move around. Jacob had a G-tube placed while he was in surgery.
Over the next few months, many attempts were made to get Jacob onto a portable ventilator so he could come home. He did not respond well at first but eventually, the settings he liked were discovered, and Jacob was on the home vent. He was still unable to come home because reflux caused Jacob to turn blue many times. His airway would collapse onto itself during these episodes, and it would be very difficult to bag him. Jacob had a fundoplication done in April, which helped significantly. He came home on May 14, 2001, after eight months in the NICU and had an episode that very night which resulted in his return to the hospital. Lucky for us, he was readmitted to the NICU since he was gone for less than 24 hours. We were comforted by this because he knew the doctors and nurses there and vice versa.
Jacob was released again on June 13, 2001 and has had one trip back to the hospital due to his fundo slipping and reflux causing him to begin turning blue again. He stayed in the PCU for 2 ½ weeks, where his feeds and meds were adjusted, and he has been fine since.
On October 4, 2001, Jacob was able to come off oxygen for the first time in his life! We are so excited and hope that his next visit to the pulmonologist will result in some of his ventilator support being weaned. We know this will be a long process because he is working to build up enough reserve to survive on his one lung. He is growing very well, and we are encouraged with his progress.
Jacob does not eat by mouth and does not like the taste of food. He will go to the Feeding Disorders Clinic this month and hopefully will learn to eat by mouth. He receives physical and occupational therapy due to developmental delays. Jacob has severe hearing loss and wears hearing aids. He does not like wearing the hearing aids so we are working on that. A speech therapist recently began teaching us sign language and is helping Jacob learn to communicate. His speech is very delayed, but we are confident that he will catch up quickly with the help of the therapist. Jacob is doing great and is the light of our lives! He is a happy little boy and enjoys going places. We take Jacob for walks around the neighborhood, at the mall and anywhere else we can go that is safe for him. We are very fortunate and thank God everyday for Jacob.
Sincerely,
Jacob's mom, Donna Crowley (Texas)
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