Laryngomalacia & Tracheomalacia - All Discussions Combined Here!

Everyone: Well the good news is it wasnt whooping cough. They never did find the source of the fever. he had to have breathing treatments every 4 hours and prednesilone for 5 days. He seems to be doing much better tho. still has nasty cough.

Liz: I did take him to the er on tuesday then to the dr office on wednesday. The er dr thought it was pnemonia but xray was neg.

Everyone: oh and when we got home from the dr wed evening my 3 yr old boy was running down the driveway tripped fell and knocked out 2 front teeth. So we went back to the er.

Everyone: we just recently found out that my granddaughter has laryngomalacia. She had been wheezing since birth and her dr said it was nothing it happens sometimes. since i have had so much to deal with with buddy i demanded a referral to pulm. they did the bronchoscopy and discovered laryngomalacia. She is also developmently delayed due to not being able to lay on her tummy cause that makes her wheezing to bad. she is now 8 months old and still cannot roll over. however she can finally sit up by herself. oh and by the way i get the fun job of raising her since her mother, my daughter, decided that raising a kid was too hard so she moved out and left the baby behind. sad situation but true.

Merri- I am so sorry about the teeth. The mouth injuries are so bloody and upsetting to everyone. I hope he feels better.
Also, I am sorry your daughter left her daughter behind. I hope that now that they have found the cause of the wheezing she will be able to "catch up " a bit. Will she be able to get therapy?

Take care,
Ellen

Ellen: They have already begun therapy, 2 weeks now. My son that knocked his teeth out saw the dentist today to be fitted for a partial only to find out that two more teeth on the top that were damaged have to be extracted tomorrow and the four on the bottom are loose. if they dont tighten up then they might extract those to. when we left the dentist office my car got rearended!

To make things even more crazier my oldest son was admitted last night due to bike wreck. he has severe concusion and multiple abrasions and 12 stitches. looks like he can go home today.

Im ready to put my family in a padded bubble!!!!!

Buddy has had a 30 day trial of not using his gtube. however he has lost 4 pounds so it doesnt look like we will get rid of that anytime soon.

Merri

Buddy had to see ped surgery today. They have finally decided to do exploritory surgery to see why he keeps getting infections around the gtube. Worse case they will have to relocate the gtube. The 30 day trial off tubefeeds was not a success so we will have to continue feeds. He has had the gtube for 2 1/2 years now. they said he would probably only use it for 6=8 weeks. So much for that. I will keep you guys updated.

Merri

Ugh, I'm sorry he's having to go back for some more surgery! I hope they're able to figure out what is going on and that it's a simple fix! Hugs, keep us posted when you can!
Stacy

Merri,

I'm sorry that y'all are going back for more surgery! Also, sorry about the g-tube trial not going well

I know how that feels, my son has had his g-tube for almost 6 years now, and he is finally down to about 20% tube feeding.

Let us know how it goes!

Leigh

it turns out to be nothing major that was causing the abcess around buddys gtupe. there was a fistula that was caused by an injury to the site over a year ago and bacteria was trapped. they opened the area drained it cleaned it and now it is healed and looks sooooo much better.

Merri

That's great to hear, Merri!

-Jackie

Wow! So glad that it was just a simple fix and it's looking great now!!
Stacy

Such great news!
Laura

Hi-

I am the mom of a 3 boys, Connor, Nate and Jake. Jake is my newest little one born on 5/17/12 and has tracheomalacia, hypotonia, absence of the corpus callosum and overlapping fingers with contractures in both middle fingers. Jake just had a tracheostomy this week. We are hopeful that the tracheomalacia and hypotonia will get better over time, but are concerned that his neurological issue is related to the breathing and muscular issues. Has anyone had a similar experience with their little ones?

Hello and welcome to Share! I'm so sorry of the difficulties that Jake is facing since his birth. How has he been doing since his tracheostomy placement? I hope to hear more about your little guy!
Stacy

Sheel,
Hi and welcome to share! Hope everything works out for sweet Jake.

Can't wait to hear more updates!

Love and Light,
Liz

So far so good. Jake is really still recovering. He has been weaned off of the morphine and now he is weaning off of the atavan. They also just moved him off the ventilator today back over to just the straight CPAP of 8 with a little bit of additional pressure (not sure what that one is called). They say so far he is doing great. I'll be seeing him tomorrow as I took today off to go to a picnic with the other 2 boys. Hopefully he'll be a little more alert than he's been since the surgery. I still won't be able to hold him yet though can't wait till I can again.

Hi! It souds like Jake is doing great since his surgery. My son didn't have the neuro problems that Jake does but he did have a trach for 3 years when he was finally discharged from the hospital. I hope you are able to hold him again soon. Please let me knowif there is anything I can do to help!
Laura

Great news!! I'll be praying for a quick recovery and that you get to hold him soon.

Love and light,
Liz