Severe bpd/trach/vent

#1 07-11-2005, 04:55 PM

My son has 4-8 spells a day, brought on by agitation, in which he must be bagged within 30 seconds in order to get him back to baseline without a code situation. Any other parents with similar situations?

Melisande · #2 07-11-2005, 08:05 PM

Welcome! I think you will find that there are more people (with and without vents) who hang out on the pediatric trach board. You might post there.

Been there, done that with the spells. Sounds like your child has airway issues, which mine does not, which has made figuring out the "spells" even more interesting (but that's another story). I know of others who've had similar symptoms, however. My son had high CO2 levels and they think that the spells are related to that. He had 7-12 a day when we left the hospital at 3 mo. of age. They were much shorter with the trach and we could actually sort of bag him. He's better now that he's 2, but still has about one a week. Makes for a fun bathtime with a trached kid having a spell while you're trying to rinse his hair! He recovers very quickly now and we don't bag him unless they go too long.

Good luck and welcome. You've found a neat group of very informed, caring parents here. You've come to the right place.

#3 09-02-2005, 08:14 PM

Are you sure his blueness is brought on by aggitation and that he is not aggitated because he feels a problem coming on before anyone can visualize it or vitals indicate a problem?

Johnny2005 · #4 09-30-2005, 01:20 PM

I just happened to come into this forum and read your post. My son John is famous for his blue spells! The nurses know when it is coming. Here is a little of the history.

John is a very happy baby. He is 6 months old and still in the NICU. Every time John needed to poop he would get really mad and turn blue. Every time John just was mad from everyone poking him or whatever the case may be, he turned blue. Well, they started him on Narcan for his stomach. That helped with the pooping issues. However, he still turned really blue and needed to be bagged. They had been doing ECHO's on his heart every month because he had right sided heart failure due to the pulmunary hypertension. The ECHO's always showed a narrow vien in the SVC. They said the vien was not pumping the blood from the top of the body to the bottom properly. They placed a stent into his vien a couple of weeks ago. Ever since than his blue spells have stopped.

Some of the nurses feel the stent did it. Others have said that John is learning how to calm himself down as well. They explained that babys are born with the ability to calm themselves. John never learned how to do that because he has been in the NICU since birth.

It could be many things depending on your childs condition. Good luck.

Barb

Kaylie · #5 10-14-2005, 04:54 PM

Hi,
When we first brought my grandbaby home more than a year ago,she use to do the same thing as well.She had many episodes a day now mopre than a year later we barely see any of them.She had a PDA and also a heart murmur as well as othe medical conditions along with her trach. Although i am not a doctor i would look into the heart issues, because that seems to play so much of a factor.Something else my grandaughter use to do and still does sometimes is get very sweaty especially when eating whether tube feeding or bottle feeding, it didnt matter. I know too tho that trach kids sweat more than others but this was different.hope this helps.
Kathy

#6 11-10-2005, 01:10 PM

Greetings!

I know the situation you describe well. Asa would require rescitation about nine times a day when he first came home. That is bagging him just to get him where he could maintain on the vent. I feel for you. That's about all I can offer. Sorry. Hang in there and pray for some decent nurses to help you.

~Velvet