new to vent & trach-going home

[liamsmom]

Hi-
My son, Liam, is three years old. He was on BiPap from age 4 months to this April. The short of it is: after a life threatening event and inability to go from intubation back to BiPap since medication suppressed breathing, he had a tracheostomy. He has been in the hospital since April 1 of this year and we have a discharge date for December 13!
He has central apnea, epilepsy, movement disorder, hypotonia, g-tube. We have no diagnosis for his symptoms.
I am a nervous about going home with the vent since it is relatively new. I would like to connect with other parents who have child on vents. We live in SW New Hampshire.
Tanya

[kctwinmommy]

Just take it one day at a time! And remember, you CAN do it! It seems overwhelming at first, but in time, it becomes second nature. Are you going to have help at home, any nursing??

[Momof2NC]

I'm there with Cindy! You can DO THIS! at first it will take a little settling to your new normal, but with time it will get easier! Please ask for help when things get tough, but we're all here for you !

[jamie]

Hi, Don't worry. I was in your same position this time last year. My son was in the hospital from May of 2009 until December of 2009, waiting for a home ventilator. I was so worried about taking him home, and one of the first things I did was come to these boards. there are some very wise parents and caregivers here who will be able to give you tons of guidance. Good Luck... best Wishes... and congratulations on bringing your child home.

[lynn]

As the others have said, it is really scary at first, but does become second nature. Congratulations on getting home. Please ask any question that comes to mind~ there is almost always someone who has had the same thing come up and can help guide you through the learning process.

[Niff]

It can be very scary, but you can do it!! Just try to soak in as much as you can. Ask questions, and even ask to do things yourself. We only had 48 hours with the vent before going home, and I wish we had longer. It would have made being home much less stressful!

[kadiera]

Welcome to the board. You'll find lots of great people here - many of us have or have had ventilators at home, and you'll figure out how to make it work.

[JWorthington]

Hi and welcome to the boards. you will find lots of support here. good luck with the homecoming, you will do fine

[alizesmom]

Fantastic to get your little one home for Christmas. The vent and trach will become second nature to you. Until that happens we are all here to given answers, support and a listening ear. :hug: Karen

[Kate]

Welcome!! You will find that these boards are your lifeline. :D Everyone here is very supportive. You can do it! Soon it will all be as easy as changing a diaper...yes scary though at first...you will get through it and become an expert! :hug:

[Billy'smom]

Hi-
My son, Liam, is three years old. He was on BiPap from age 4 months to this April. The short of it is: after a life threatening event and inability to go from intubation back to BiPap since medication suppressed breathing, he had a tracheostomy. He has been in the hospital since April 1 of this year and we have a discharge date for December 13!
He has central apnea, epilepsy, movement disorder, hypotonia, g-tube. We have no diagnosis for his symptoms.
I am a nervous about going home with the vent since it is relatively new. I would like to connect with other parents who have child on vents. We live in SW New Hampshire.
Tanya

Welcome! I am fairly new to the trach board but not to trach/vent. My Billy has had a trach/vent for years. I can relate to the life threatening event. My Billy "died" in front of my eyes and I had to recesitate. Very scary! Anyway, a trach/vent can be scary, but you will get used to it before you know it! :) Ask lots of questions!!!! Be sure to join the OUR-KIDS list as well for more support regarding disabilities in general. I can also relate to the no diagnosis. Neither of my boys have a firm diagnosis of anything!

[LeahMarie]

Hello! I'm new to the board as well but I've found this site to be very helpful. My son has been hospitalized since April 13th & hes coming home the day after Christmas. I'm just as scared as you are but I know we CAN do it. I'm in RI which is a few hours away but I'd love to do this together so message me anytime!

[Madeline and Molly's Mom]

Hi Tanya,

Welcome! (remember us?) So glad to hear Liam is going home! Yay!

[liamsmom]

Hi-
How have things been going at home? Busy I am sure. I am so glad to be going home. Lovely photo of the girls.
all my best, Tanya

[liamsmom]

Thank you all for your encouragement and support. It feels so much better going home and knowing there are others out there who have been where I will be starting next week.
Tanya

[liamsmom]

Just take it one day at a time! And remember, you CAN do it! It seems overwhelming at first, but in time, it becomes second nature. Are you going to have help at home, any nursing??

As of last week we had 40 hours filled so hopefully a bit more. It is hard to get overnights in our area so we will put a bed in his room for my husband or myself to watch at night.
We didn't sleep much with him on bipap I'm thinking we will sleep less while he is on the vent. I will find out next week.
One of my fears is not waking up for an alarm if I get too tired.

[Billy'smom]

As of last week we had 40 hours filled so hopefully a bit more. It is hard to get overnights in our area so we will put a bed in his room for my husband or myself to watch at night.
We didn't sleep much with him on bipap I'm thinking we will sleep less while he is on the vent. I will find out next week.
One of my fears is not waking up for an alarm if I get too tired.

You won't sleep through the alarm. My son is down the hall from us and I have a baby monitor (turned low because it picks up EVERY little noise) and I hear the alarm go off no problem. I have the alarm at the loudest. You learn to sleep light when you need to. I actually felt more relaxed with the vent because it has an alarm. The BiPAP didn't. One time I found Billy "drowning" because the humidifier tipped and there was no warning. I have the HP alarm set to go off after 1 breath.