IsiahsMommy
TrachKid Profile
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Isiah was born on march 24th 2008 and took his first breath at 4:11 p.m.He is the youngest of 4 children.Isiah was born with Crouzon's syndrome which he inherited from me,his mommy.I have Crouzon's syndrome and of course I carry the gene. My whole Maternal side carries the crouzon's gene. We have 2 other children with crouzon's but with no medical "impairment". Iaish's labor and delivery was as normal as can be. He was bout 2 weeks old and we noticed a kinda "snort" when he would breath, he snored when he slept and it took him forever to finish a bottle. He was failing to thrive and his lips always had a purplish tint to them. I mentioned this to his pediatrician and she referred us to Dr. Digoy: a ENT Dr. in OKC. Dr. Digoy said he was having so many problems because his midface was "sunk in" and he did not have an adequate airway.Dr. Digoy wanted to perform an adnoidectomy. He thought that would help him with his breathing.eating and help him to rest.Surgery day came and while Isiah was still under anesthesia Dr. Digoy came out and told us the adnoidectomy really didnt help much and Isiah would still have lots of trouble breathing and worst case scenerio he could die. He gave us an option, TRACHEOSTOMY.My husband and I thought quickly ( I mean like 2 mins quickly) and we told the Dr. to go ahead what ever would be best for Isiah. The rest of the surgery took like an hour and a half and the next time we saw Isiah was in recovery and he had no voice, that was the hardest thing I think I have ever had to go through. Here we are with this 3 month old baby going in for a routine procedure and he came out of surgery with no voice. He was taken to his room in ICU, he was crying (no sound) blood and secretions were coming out of his trach and I just broke down. I was ready for the Dr. to take the trach out. I thank the lord my husband was strong.Isiah was in the hospital 7 days and I have to admit it was SO SCARY when he came home. Trach care,apnea monitors. How would I know when it was time to suction or change his trach. How would I fit this new schedule into our daily schedule with 3 other kids. What if his trach comes out while he is asleep,lord I don't know. It was not easy at first and very trying at times but 19 months later I think we have gotten the hang of it. Isiah has had a couple surgeries since he got his trach and has done excellent with his recovery, thank you lord. And yes, his trach accidently came out one time about 2 months ago,my husband and I did excellent putting it back in and I think we are going to be ok. We are very bleesed to have my mom who watches Isiah for us, and she does an excellent job. Of course I am looking forward to the day Isiah has his trach removed but I believe right now things are the way they are supposed to be.
History
- Blog
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- Member for
- 2 years 18 weeks
Location
- Country
- United States
- State/Province
- Oklahoma
