View Full Version : First time posting, but I've been lurking for a while (I know, sounds creepy!)
01-10-2010, 12:30 PM
Hello to all you wonderful people. My name is Monica and I live in central Canada. I am a single mom of five boys, 2 live on their own now and three at home - the youngest are 12 year old twins, Robin and Logan (term, unremarkable pregnancy). At 7 months of age, both babies were diagnosed with bronchiolitis and put on abx. Logan did get better within days, although he was a sick baby all that winter with pneumonia, probably had RVS etc. He is now a healthy pre-teen; lots of environmental allergies, and going through the "non-compliant" phase of asthma management. Robin just got sicker and sicker and was hospitalized with bi-lateral pneumonia - he was hospitalized until 25 months of age -it took a long time to diagnose that he had adenovirus which had seriously scarred his lungs. It is also highly likely that damage was caused by RSV, which the pediatrician refused to test for because he was "over 6 moths of age". Robin was kept sedated and intubated with ETT until about 11 months when a CAT scan was done which showed the massive scarring of lung tissue- decision was made to trach, although the first surgery nearly killed him (they couldn't ventilate with a Shiley or Portex and had to custom order a Bivona - he had an unusually large trachea for a tiny baby). It took a very long time for him to stabilize on the hospital vent, then the home vent but we finally made it home. That's all the background stuff, sorry it's so long! He is now in grade 7 - had the vent at school until halfway through grade 5, now only at night. He is very oxygen dependent - ambulatory, verbal (pmv or with leak), small for age, has a wheelchair for transportation and distance (i.e. he walks at school and parks the wheelchair, does stairs, but w/c for outside). I took a long time to post on here because I see that most members have younger children and I wondered if it would depress people to see a 12 year old still trached, when decan. seems to be the goal for most with the little ones. I hope I am able to contribute here.
01-10-2010, 02:32 PM
Hello Monica and welcome - your son sounds very similar to my son, though Sam, although Sam is much younger. Sam was trached at 19 months of age following airway surgery, while he was still in hospital he caught adenovirus followed by pneumonia and influenza all in a 3 month period. He was discharged on continous oxygen. A CT scan revealed scarring to the lungs caused the the adenovirus and he now has a diagnosis of bronchiolitis obliterans, which is a permanent lung condition. On the plus side, Sam came off daytime oxygen in July 2008 and off at night also 12 months ago. He was decannulated in May last year. he started school on oxygen and with his trach and has done amazingly well. Like Robin, he has a wheelchair for longer distances, but can walk around school and manage the stairs. Sam will be 7 next month.
Sorry for the essay :o Looking forward to getting to know you and your family, so sorry that you are having to cope with this alone, but it sounds like you are doing a great job!
Welcome!! AH-don't worry about the age here! :) Sounds like you've been through a lot!! I actually thought that someone JUST posted about a teen w/a trach. I actually think it is nice to see older kids as if my son is to keep his for life (we don't know yet) I guess I'd like to see how parents of older kids do things. :) I'm sure you will be a big help to many. Welcome to the boards-I'm sure you will make many friends here!
01-10-2010, 06:10 PM
HI Monica! Welcome :) You probably have a lot of good advice for us. No more lurking!
01-10-2010, 07:28 PM
hi monica my name is jamie and my son is 13.
he is trached due to nerve damage during brain surgery.
he is smart and funny and also very shy, it is hard for him to adjust to this it being new, and we are praying he will get his trach out one day. i guess we all want that for our children, but take it day by day and hope for the best always. i am trying to get evan to make friends with other tens with trachs, but like i said he is shy . but i am here for any advice i can get.
01-10-2010, 10:47 PM
Hi Monica, welcome! I also lurked for a while too, Ithink alot of us do. lol
Hello Monica.. glad you decided to quit lurking and decided to join in ..
As a parent of a child who is not "expected" to be decanned (and if by chance he is it wont be anytime soon) it is nice to see how parents and older children cope with having the trach.
looking forward to getting to know you.
01-11-2010, 07:49 PM
Hi Monica! My daughter has been decanned already, but I can't stay away! Definitely I made it through with the support I got on this board - so no more lurking, ok? Nice to meet you!
Hi Monica ~ My son, Jonathan, is 12 and just had his trach placed in August. His trach is permanent -- unless the Lord chooses to miraculously heal him. I have found a lot of helpful information here. I have even searched through the archives on here to find answers to questions I have because I believe the best information you can get is from someone who has "been there".
01-12-2010, 01:07 PM
I'm so glad you have come forward. Welcome. I would guess that you, like many of us, focused on decannulation in the beginning. I think that is how we cope, hoping it's temporary. And many of us are at that process in the journey. A good number of us will probably reach that goal at an early age but some of us won't (we are probably in that category). I think it's valuable to have families at all stages of this journey participate on the trach forum. And it reminds us to enjoy life along the way because none of us know for sure that the trach won't be long term. That is important to remember. And it makes those with older kids feel better that they are not alone. (I do think that as parents learn to cope and accept they aren't as likely to need the support and be active on the forum so there can be a mistaken sense that there are few older kids. I don't think that's the case.) So don't worry that we don't want you here. We do. I'm sure you have a lot to share.
01-13-2010, 07:56 PM
:) Thanks for all the welcoming messages! I guess I didn't mention that I'm a full time university student (I know, what was I thinking!) also, and can be a bit slow on the uptake here! It's my last term of a 5 year program so I need to get organized, and I think that will include checking in regularly. I'm looking forward to getting to know all of you.:)
01-13-2010, 09:19 PM
Hello and Welcome Monica, we are just west of you approximately twelve hours away. It sounds as though you have been through an awful lot and are very busy.
Nice to meet you!
01-15-2010, 10:14 PM
A late welcome from me. Age really doesn't matter here and we all love a new perspective so glad you came aboard. Karen
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