for parents of babies/kids with trachs (warning long)?
By admin on Jan 20, 2009 in Toddler & Preschooler
ericnrosesmom asked:
My son was born in Sept 2006 with asd’s and vsd’s (holes in the heart) and a coarcation (narrrow aorta). He had surgery at 10 days old to fix the aorta and was placed on a feeding tube because he was aspirating (inhaling) his formula. He went back to the hospital with pneumonia in early January 2007. At that time his next heart surgery was scheduled for June. In mid-February they were almost ready to send him home until he got an infection and went into respiratory failure and was placed on a vent. This happened several more times throughout spring 2007 until they finally did the second heart surgery in July. By then he’d been on the vent so long he’d become dependent on it and they had to put a trach in his throat. All in all he was in the hospital 1 week short of a year. The hospital was in Indianapolis, 3 hours from home, so I lived at the Ronald Mcdonald House the whole time. He’s 2 now and still has the trach, but now needs the vent only while asleep. He crawls very well and very fast, and can walk short distances with help. Dosen’t speak at all other than just making noises with his mouth. We hope he’ll walk on his own within the next few months. Also still has the feeding tube. He eats some stage 2 baby food but we have to be very careful that he dosent aspirate again. Anyone have a kid in a similar situation? How old were they when they got rid of their trach and/or feeding tube?
My son was born in Sept 2006 with asd’s and vsd’s (holes in the heart) and a coarcation (narrrow aorta). He had surgery at 10 days old to fix the aorta and was placed on a feeding tube because he was aspirating (inhaling) his formula. He went back to the hospital with pneumonia in early January 2007. At that time his next heart surgery was scheduled for June. In mid-February they were almost ready to send him home until he got an infection and went into respiratory failure and was placed on a vent. This happened several more times throughout spring 2007 until they finally did the second heart surgery in July. By then he’d been on the vent so long he’d become dependent on it and they had to put a trach in his throat. All in all he was in the hospital 1 week short of a year. The hospital was in Indianapolis, 3 hours from home, so I lived at the Ronald Mcdonald House the whole time. He’s 2 now and still has the trach, but now needs the vent only while asleep. He crawls very well and very fast, and can walk short distances with help. Dosen’t speak at all other than just making noises with his mouth. We hope he’ll walk on his own within the next few months. Also still has the feeding tube. He eats some stage 2 baby food but we have to be very careful that he dosent aspirate again. Anyone have a kid in a similar situation? How old were they when they got rid of their trach and/or feeding tube?
On Jan 21, 2009, Almost due with # 2! said:
I don’t have any experience with this, but I did find this site that might be helpful where you may be able to talk to other parents and find the info you are looking for. Good Luck!