New to Trachkids
Hello everyone my name is Melinda and I have ababy who was born premature her is named Esme she was born at 25 weeks and is now about to be 5 months old, she had a trach place 4 weeks ago and it was honestly a blessing in disguise. I am now trying to see if we can bring her home, she is still on life support and we are trying to see just how that will work in the mean time I am trying to learn as much as I can until we have a family meeting to discuss just what will happen. I have been trying to find a website just like this one were there are other parents who have children with trach's I do need advice, did anyone take their child home on life support with the trach? what is it like? how long did your child stay on the vent until they were able to get off?
Or any other information some can give me would be great please!
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My son is also on a ventalater
Hi, my name is Nellie,
My son is Alexander, he now is 1 year old. He has had in his trach for about 8 months now, and has been on a vent ever since. He had bronchulites at the age of 2 weeks and had stopped breathing. he was intubated for a week, then we were discharged from the hosp. then later he had trouble swallowing, he took more than an hour to drink 2 oz. well it turned out he had scar tissue blocking his airway, so that was his first sugery. Then in March 16,2009 He tested + for RSV he collaped in the hospitals ER so he was intubated from that date till april 4,2009 the ENT had told me in jen. when he got his scar tissue removed , that alex had tracholbroncolmalacia, meaning floppy airways, and subglottic stenosis, but if it did'nt cost any problems it was gona be OK , But I guess not he now has a trach, when ever the drs, woild try to extubate he would collaps . So the drs said that his trachea was to swollen fom been intubated so many times that he was not going to be able to make. So then we decided to put in the trach, IT was'nt a hard disition because it was my sons life that we had a chance to keep if we would put the trach, But it was hard just to think about it. Well alex went it to surgery and he was on the hosp. vent he was doing great then the drs said that he was doing so good that they were going to change to the trach coller, thats only oxygen and humidified air.. Well alexs heart rate went up as soon as they put it on and his sats would drop. the ENT came and took a look in his trachea and saw that is trachemalacia and bronchol malacia were to bad for him just to be on o2 and humidified air. so we were put back on the vent . So as of today alex is on the vent but just on CPAP. I have a friend that also has a child with a trach but hers is in need of the vent , the vent is breathing for her. She lives 5 min away from us and its really awesome that someone like you is near by if you have any quiestions. Well alex gets taken of the vent sometimes. You know he is 1 so he likes playing alot. On chiestmas eve he pulled out his trach, you can imagine I was screaming!!! But everything is going to be alright thats why we are here to support each other. If you have any questions you can email me at any time. I check my email everyday. If you get to come home soon , ask if they have gotten a home health nursing comp. We have VANDERBILT HOME CARE, AND THEY ARE AWESOME we have them 12 hours a day 5 days a week, and it really helps. I also have a 2 year old and its hard but we can get threw this each day. WE also had to do what's called ROOMING-IN In the hosp. we had to show that we were going to be able to give the care alex needed before we came home. So please let me know if there is something I can help you in . Happy New Year!!
Nellie
rafael.reyes12@yahoo.com
Welcome, Melinda, Esme and
Welcome, Melinda, Esme and family. I brought my 24 wk, 1 lb 2 oz daughter w/trach home at 14 months. I adopted her so did not go through the early agony that all you birth parents did. Jasmine was on and off the vent for much of that first year. Once she was trached at 5 months she did so much better, came off the vent, etc. She had many long term problems, some due to being a preemie and many due to her birth defects. This was in 1984! Sadly she passed away in 2001, still trached.
I am a nurse who worked in pediatric "hi-tech" home care and was privileged to be part of one family's life for 5 years. Their little one was trached and vented at about 7 months, She is still on the vent at 20 (!!) because she has a rare form of Muscular Dystrophy. She has a "normal" sibling and had very involved grandparents. They all learned the care of the child - to their own comfort level - so that the child could have a fairly normal relationship with each person. When she first came home from the PICU they had 24 hour nursing. That quickly became 16 hours. At about 2 and 1/2 years they stopped night nursing (as a parent you get to know the sounds your child makes normally and wake easily when she needs suctioning - before any alarms go off).
Anyway, the trach, vent, monitors, etc. quickly become just "part" of your child's daily care. You need to ask questions of the nurses, doctors, respiratory therapists, and the home care coordinator or discharge planner. It will fall into place.
If you have specific questions about something a parent could answer please e-mail me or post on this site.
Nancy
Hi Melicolon27
I brought my daughter, Alaya home on the Vent and with a Trach. It was quite scary and overwhelming. Long story short, It's been 10 months since she's come home, she is now 14 months old and only on the Vent at night when asleep. The weening process had begun while she was in the hospital, and we continued it when she came home. I would say for the first 3 months she was on off the Vent for up to 4 hours daily, until we went to being off completely during the days. she is doing well, and I am not as I was when she first came home. I never thought I'd be able to handle it, but I have and am continuing to do so. She is truly a blessing, and such a fighter. She has taught me the true meaning of STRONG. GOD BLESS!!