Why Did or Do Our Children Have Feeding Tubes?

Monday, February 6^th

Topic: Why did Zach have a tube, what medical conditions have resolved?

Post a highlight of the medical conditions that required feedings.

Zach had an ng-tube in the NICU. Then when Zach was 6 weeks he had surgery for his feeding tube. He got his feeding tube for several reasons, he had a very high metabolism and we were looking at potential open heart surgery to correct a VSD in his heart. What is a VSD? VSD stands for ventricular septal defect or means a hole in the heart. Due to the severity of his VSD we were looking at a four step open heart surgery to correct this defect. So they placed the g-tube to help him get the needed high calorie formula to help with healing.

In a healthy heart the blood low in oxygen returns to the right atrium (side of the heart) travels to the lungs then get the needed oxygen, then return to the left atrium (side of the heart) then is pumped through the aorta out to the body into the smaller vessels of the body. Children with a VSD have a hold in the in the right and left sided pumping chambers or the ventricular septum. This hole allows the blood with and without oxygen to get mixed up causing extra noise. This extra noise is heard in this sound is what doctors call a heart murmur.

Due to this his body required extra calories. When the doctors did surgery for his nissen wrap and g-tube placement they discovered he had a hernia that needed immediate repair as well. Within six weeks of his nissen and g-tube surgery he was back in surgery once again to have his hernia repaired. Due to being a preemie this hernia repair I guess is quite common.

Luckily for him at three months of age the next round of heart scans and tests showed the heart murmur was shrinking so we held off on heart surgery for three more months to see of his heart would heal itself. We did not want three major surgeries in less than three months if this was not needed. By six months he was back in the OR this time for tubes in this ears due to severe reoccurring ear infections, and his heart continued to improve so that surgery was held off…

By the time Zach was four he had eight surgeries and none on his heart. The final one was for a granuloma that had attached itself to the main artery just over his heart and he was getting his feeding tube removed around this time as well.

He had been diagnosed with a VSD, GERD, granuloma, FTT, and today is completely an oral feeder. He has minimal issues in school. He struggles with reading and writing yet does the best he and is determined to read at the same level of everyone else in his class.

Why does Ellie have the tube now?

Post a highlight of the medical conditions that required feedings.

Ellie had an NG-tube while in the NICU then again at a couple months old for a short while. Her NG-tube was short lived as she refused to keep the NG-tube in and went to a g-tube really quickly.

She spent most of her two years in the hospital as the doctors struggled to pinpoint what exactly what was going on with her. When she was just a few weeks old her first re-admission to the hospital we dealt with her coding due to severe apnea and reflux episodes. That first stay she remained back in the hospital for an additional three weeks. She came back home for a couple weeks then returned back to the hospital. This pattern repeated for the next 2 ½ years. By the time she was 2 ½ she had spent at least 16-18 months in the hospital.

Diagnosis list:

Laryngeal malcia, severe GERD, FTT, protein allergies requiring special formula, developmental delays requiring OT/PT/ST, feeding therapy, sensory integration disorder severe, idiopathic chronic lung disease, fully oxygen dependent

She has had a nissen fundoplication to correct her GERD and g-tube for feeding

Daily use of pulse oximeter to monitor heart rate and oxygen levels, apnea monitor, 24/7 use of oxygen, g-tube, no oral feeds,

At 1 year of age this is what we had to do for her:

Track all feeds, O2 levels, all apnea/bradycardia spells, all meds, all alarms, awake/sleeping periods, skin colors, cyanotic episodes, striders/rhonchi episodes

At nearly 2 yrs of age her diagnosis list was:

laryngealmalacia, (possibly still bronchialmalacia and trachealmalacia) Severe GERD, FTT, protein allergies requiring a special formula, developmental delays requiring ST/Ft, oral aversion, sensory integration dysfunction, chronic ear and sinus infections, chronic lung disease, small stomach, subglottic stenosis, aspiration issues, small ear canals, small ear drums, small optic nerves, cranial stenosis, mild microcephly and seizures

spontaneous desaturation episodes without apeanic episodes, and is still 75% feeding tube fed and oxygen dependent

Daily use of pulse oximeter to monitor heart rate and oxygen levels, apnea monitor, 24/7 use of oxygen, g-tube, no oral feeds,

Track all feeds, O2 levels, all apnea/bradycardia spells, all meds, all alarms, awake/sleeping periods, skin colors, cyanotic episodes, striders/rhonchi episodes

Surgeries and procedures added include: Tonsil and Adenoid removal, Bilateral PE tubes, broken wrist, several bronchoscopies

At 4 years of age her diagnosis list was:

laryngealmalacia, laryngeal cleft, Severe GERD, FTT, severe protein allergies  causing autonomic shutdown, oral aversion, sensory integration dysfunction, chronic ear and sinus infections, chronic lung disease, asthma, small stomach, subglottic stenosis, aspiration issues, small ear canals, small ear drums, small optic nerves, mild microcephly

Bronchoscopies, both hard and soft, lung and sinus biopsies,

By age 5:

temporary laryngeal cleft repair, daily use of green acopala lung vibrator

Near daily use of feeding tube and pump

At 6 years of age her diagnosis list is:

laryngealmalacia, laryngeal cleft, GERD, FTT, severe protein allergies  causing autonomic shutdown, sensory integration dysfunction, chronic ear and sinus infections, chronic lung disease, asthma, small stomach, aspiration issues, small ear canals, small ear drums, small optic nerves, mild microcephly

Currently she has had 10 surgeries, to many hard and soft bronchoscopies to count, 2 or 3 lung biopsies, 1 sinus biopsy, monthly button changes, 1 temporary laryngeal cleft repair, is back to daily feeding pump usage, most liquids via feeding pump, minimal oral liquids if thickened to nectar thickness.