help granulomas Riley Childrens

annabellasmimi · #1 10-10-2009, 10:46 AM

Hello Everyone! I am a new member! My 2 1/2 month old grand-daughter Bella has had a trach for 6 weeks and has been home frome Riley Childrens Hospital for about 4 weeks. Last Saturday my daughter was doing trach care and noticed a granuloma. They saw the pediatrician on Monday and he advised them to see the surgeon at Riley. The first avail appt is October 22. Just this morning my daughter found another one that wasn't there yesterday. We are concerned that these are appearing so quickly! And is the surgeon the right doc to see for this? She has appointments with pulm and dev. peds. on the 23rd. Being so new to this we are scared that they won't be able to get the new trach in when they do the weekly change! And does anyone have any experience with RIley? Any help or advise would be greatly appreciated! Lisa

ericnrosesmom · #2 10-10-2009, 08:39 PM

We go to Riley too. At one point my son was inpatient a week short of a year! He's never had issues with granulomas so I can't help you there, but Dr Ackerman (pulmo) is great. However, I HATE HATE HATE HATE HATE the developmental team. They always seemed very negative, told me he'd probably never sit up on his own, much less walk. Now he runs everywhere he goes! Try not to pay too much attention to them if they get negative on you. Where in Indiana are you? We live in La Porte, between Michigan City and South Bend, so Indy is about a 3 hour drive for us. If you have any more questions about Riley lmk.

Ann · #3 10-10-2009, 09:24 PM

I would get in touch with whoever placed the trach (ENT?) and let them know what's going on and that you have concerns and demand to be seen asap. I think your concerns are legitimate and I'd want to be seen sooner than later. You almost have to sound more desperate than you truly are when you call to get an appoint in order to get in asap. Good luck.

annabellasmimi · #4 10-10-2009, 10:02 PM

Quote:

Originally Posted by ericnrosesmom

We go to Riley too. At one point my son was inpatient a week short of a year! He's never had issues with granulomas so I can't help you there, but Dr Ackerman (pulmo) is great. However, I HATE HATE HATE HATE HATE the developmental team. They always seemed very negative, told me he'd probably never sit up on his own, much less walk. Now he runs everywhere he goes! Try not to pay too much attention to them if they get negative on you. Where in Indiana are you? We live in La Porte, between Michigan City and South Bend, so Indy is about a 3 hour drive for us. If you have any more questions about Riley lmk.

I can't imagine being there for a year. They told my daughter that after the trach was placed that they would be there 4-6 months. She came off the vent 2 days later and home in 2 weeks. We are in Lowell, about 2 hours north of Indy and about an hour southwest of you. To me it seemed EVERYONE at Riley was very negative with the exception of a few great nurses. Thanks for the heads up about the developmental team. My daughter is already worried about that appt. Bella has multiple congenital anomalies and no diagnosis. Dandy Walker variant has been mentioned and she does have arthrogryposis as well as the inability to handle her secretions because she can't swallow regularly. Both hips are dislocated and both femurs were fractured. The ortho at Riley is pretty straight forward and tho we aren't sure we want to hear what he has to say he doesn't beat around the bush. We have been hoping to find some local docs but haven't had much luck with the exception of the ped. The drive in the winter worries me. I could go on and on!! Thank you so much for your advise!

annabellasmimi · #5 10-10-2009, 10:20 PM

Quote:

Originally Posted by Ann

I would get in touch with whoever placed the trach (ENT?) and let them know what's going on and that you have concerns and demand to be seen asap. I think your concerns are legitimate and I'd want to be seen sooner than later. You almost have to sound more desperate than you truly are when you call to get an appoint in order to get in asap. Good luck.

Thank you Ann. We will be calling again on Monday with the hopes that they are in the office. They seem to have very few office hours. As a last resort we can drive to the Riley Emergency room where hopefully someone can take a look at these and do something about them. We are learning quickly that very few local doctors or hosptals want to deal with an infant with a trach. We are getting very good at sounding desperate because we are most of the time. Thank you again!

Gretchen(Celia's mom) · #6 10-10-2009, 10:37 PM

Celia had alot of gran tissue around her trach for the first few years. Sometimes it popped up out of no where and other time grew slowly. Our ENT always handled the gran tissue for us.
My daughter has Dandy-Walker Syndrome. She can not handle her secretions and does not swallow either. I am here if you need anything!~!

suzanne2545 · #7 10-11-2009, 10:28 AM

Definitely call whomever placed the trach.

On the negativity. Better to be prepared for the worst and get a ray of sunshine! In my opinion, at least.

I grew up in Lafayette . . . no experiece with Riley though . . . we don't live in Indiana any more.

Good luck.

Suzanne

bryantem · #8 10-11-2009, 11:24 AM

Addisyn has had some issues with granulomas as well. Hers have only been on the outside, so they haven't caused any major problems. Her ENT removed them all during a bronch. If they are small enough, they can freeze them off with a little silver nitrate. I would call his office and leave a message for him or whoever returns his calls. For us, we can leave a VM for his medical assistant and she always promptly calls back. I usually don't have a lot of luck with their office staff.

nadiasparents · #9 10-11-2009, 12:19 PM

Nadia has had both outter and inner. with the inner they have to be lasered off or you'll be freaked when you suction blood.
outter ones always went away on their own.
just be sure they arent blocking entry way

Kaylie · #10 10-11-2009, 02:25 PM

Quote:

Originally Posted by annabellasmimi

Hello Everyone! I am a new member! My 2 1/2 month old grand-daughter Bella has had a trach for 6 weeks and has been home frome Riley Childrens Hospital for about 4 weeks. Last Saturday my daughter was doing trach care and noticed a granuloma. They saw the pediatrician on Monday and he advised them to see the surgeon at Riley. The first avail appt is October 22. Just this morning my daughter found another one that wasn't there yesterday. We are concerned that these are appearing so quickly! And is the surgeon the right doc to see for this? She has appointments with pulm and dev. peds. on the 23rd. Being so new to this we are scared that they won't be able to get the new trach in when they do the weekly change! And does anyone have any experience with RIley? Any help or advise would be greatly appreciated! Lisa

Hi Lisa,
I too am a grammy to a 5 and half year old, who we call the granuloma queen. i hear your concern and its very valid, yes its true that granulomas are sometimes not a risk, but its also true that they could be as well. they can occlude the trach from going in, ( i hope this dont upset you) i am only trying to be honest. we have had many here , and the risk for some children are greater than others. i too would asap a appointment with the surgeon, or someone within his team and be demanding if you must. we had a incident ( this too is not to scare you but to show you that it can happen) were the home health nurse was changing the trach and the new one wouldnt go in and there was no air exchange and of course Kaylie could not breath, it was imminent that she needed intervention. We had inside and outside granulomas one inside went from 85 % occluding to 100% in 4 days. I hope u can get in real soon, and if u must go to the er, and if u have to lie do that too, just to get in to see someone. we have other things with granulomas as well, that is just one incident that stands out. please know we are all here to help you guys. if you want or need anymore info just pm me. please let us know what happens..sometimes the Docs and or the nurses dont always relay everything that can happen. i hope this helps.