Quetion

[Esties mom]

I have a quetion , I have a little girl I took in a year ago, she has charge syndrome she is 2 years old. She had a vascular ring repair when she was a infant, and has sever trachamalasia-not sure of spelling. She has horrable nights coughs all night which wakes her up then she does not sleep. She uses o2 at night . She spits up blood at night the brown stuff, the ent doc says that when her airway collapses the tissue sticks together then breaks open and bleeds. During the day she is fine when she is awake. Have any of you had a situation like this and what was done?. My doctor said he did not want to trach her unless she could not come out of a crisis. I called him and told him she seems worse at night we are getting blood about 5 out of 7 days. She desated to the 60s yesterday and she was on 02.I would feel so bad traching her because she is just fine in the daytime, what do you guys think?

[LKN]

I would talk to the ent again. I can't imagine she is getting a good night's sleep coughing up blood so much. I don't have any experience with this, but I certainly think a trach would let her heal.

[liz]

I would maybe get a 2nd opinion. This sounds like a lot for a 2 year old to handle. A lot for you to handle, too. Is there another ENT in your area? Maybe associated with a good medical center. Good luck - Estie is adorable!

Liz

[willsmom]

I think I would get a second opinion or really try to press the ENT for some answers. That just can't be any fun for a two year old, or anyone for that matter. Scary too, I would freak out if Will had blood and coughed every night!!

[Livi's_mama]

OMGoodness, poor little one! Second opinion for sure!!!

Actually sounds like to me that she needs pressure support while she's sleeping. Nothing should be closing down and reopening while she's sleeping. That's just not right.

Good luck!! Keep us posted! http://www.tracheostomy.com/iB_html/non-cgi/emoticons/luck.gif

[sassyangel4u2nv]

That is scary and the first time it happened I would have has a second opinion.. My suggestion is to get another one!!! ASAP!!! She will be in my prayers and also you will be

[Dinker]

Lori,

I would go back and really be firm about your concerns or go to another ENT.... If she really doesn't need trached then perhaps some C-Pap while sleeping will help. Jamie just went on it a few weeks ago for obstuctive sleep apnea, he is doing well with it.

I need to call you! Are you teaching the class with Becky and I at the conference???

Karin

[Kaylie]

I definetly would get another opinion forsure!

[Esties mom]

we went to Ent today with Diamond our 2 year old , he ordered a sleep study asap. He is concerned that a trach would not really help because her floppy airway goes further down then a trach will reach. He does agree she probably needs bipap but not sure she will leave a mask on. So we will see what happens after the study. Not sure about the conference Karin, office will only pay for 3 of us. I told Becky i am willing but if someone else really wanted to go thats fine.

[Kate]

Mitchell has the same thing tracheamalacia-but no blood, however he is trached. His was bad all over-very low as well so they put him on CPAP as well as the trach. The CPAP was to "hold open" the part of the trachea that the trach didn't cover. They also put in a very big trach-the biggest they could get in without doing damage. I hope they figure out something at the sleep study--good luck http://www.tracheostomy.com/iB_html/non-cgi/emoticons/luck.gif

[Esties mom]

Do you ever have trouble the airway collapsing during trach change? that is what i am worried about. Estie is a very easy trach change just slides right in.