Portable vents

#1 01-11-2004, 04:08 PM

Hi, I am new here, My son Devin is 17 months old and because of his SMA he is very small for his age. He weighs only 17lbs. When he was first trached I was told that his home vent would be portable. He has the Puritan-Bennett Acheiva PS vent. It is far from portable. It weighs about 50lbs. I asked about a more portable vent like the LTV's and was told that he would have to weigh 22lbs before he could get one. Does anyone have an LTV or more portable vent and have a child under 22lbs.? And if so, how do your little ones do on it?

Jacob's Mom · #2 01-11-2004, 04:21 PM

When Jacob started out on the LTV950, he was definitely less than 22lbs - probably around 17-18lbs. He has always done really well with it. And I know that many babies weighing much less than that go home with the LTV's. I suggest calling Devin's pulmonologist and asking him his opinion. If he says it is ok, then he should be able to put in an order for an LTV. When Jacob got this LTV, his pulmonologist actually wrote the order specifically for the LTV. Good luck!!

Shari · #3 01-11-2004, 04:23 PM

My Jacob was put on the LTV 950 at 9 mths of age, around 16 pounds. He did great on it. Check around - I bet there are a lot of kids who go on the LTV long before 22 pounds - I know of several.

-Shari

Ann · #4 01-11-2004, 05:23 PM

My son Jack was also on the Achieva at one point. Â*He got his LTV when he was 2 1/2 years old, but only because that's when it first came out. There are a lot of kids on this board that come home from the NICU on the LTV, so I don't think weight is an issue. Â*Who is telling you this? Â*I know that Apria Healthcare will no longer provide the LTV to "new" kids, but will continue to service those of us that have them already (some disagreement with Pulmonetics). Â*I'm fairly certain your son can be on the LTV. Â*Check with his pulmonologist and contact Pulmonetics directly, they should be able to help you. Â*

Good luck and welcome.

Ann

#5 01-11-2004, 06:38 PM

It was my son's pulmo that told me this, but also I was going to say that I think that it was because Devin's Dme is Apria and I thought that it was because of Apria's saying that their rule was that a child had to be 22lbs. When I talked to Dev's RT with Apria he told me about having issues with Pulmonetics. I don't know of any DME's in our area that even deal with vent's. Apria had to special order Dev's Acheiva and that took 2 1/2 weeks. I have been checking into this since Devin came home in March and haven't found out anything for certain. His 2 pulmo docs at East Tennessee Childrens Hospital won't even discuss the issue with me anymore.

christyw · #6 01-11-2004, 07:32 PM

I know that Gaithy wasn't quite 22 pounds...but she was probably close. I remember being told over and again that she needed to be about 10 kilo ----which I think is about 22 pounds, because to get the pounds you are supposed to multiply the kilograms by 2.2. Â* Gaithy was still in a baby carrier--a carseat for babies under 20-22 pounds when she finally came home at one year of age. We weren't able to put her in a forward-facing seat for awhile because she didn't weigh enough. The last recorded weight that I have for her was in July 2001...about a month and a half before she came home, and she was 12lb, 12 oz then. So, I know she didn't gain 10 pounds, or even close to that, in 1.5 month's time! I think she was about 15 pounds when she came home.

What the pulmonologists here usually do is try the child on the LTV (which is considered the "home vent" at our hospital, or at least it was back then) and if the child does well for awhile, they say the child is tolerating it and start getting ready for discharge.

I would say your baby weighs almost exactly what Gaithy weighed when she was put on the LTV, if not more. She only weighs 22-23 pounds now! And she is 3.5 years old!! :-)

It's a great vent...we had one (well, we actually had 2) for about 2 years, and now Gaithy is off the ventilator. I hope you are able to get that vent. They weigh around 15 pounds or less, so it is definitely very portable.

As for Apria, that company was and is our DME too...so that wasn't an issue, as far as the 22 pounds thing. However, around here, they aren't discharging babies on LTV's anymore. I can't remember if it is an Apria thing or an Arkansas Children's Hospital thing....Shari (above) knows more about that. The LTV's have had some kinks, and that's made a big problem. But we have LOVED those vents, they make life easier and better for vent patients, and I don't think anyone should be denied their use!

Good luck! Keep us posted.

christy

Ann · #7 01-11-2004, 07:41 PM

As I'm sure you've learned, you have to be persistent. Jack's pulmologist didn't want to have anything to do with the LTV either, but I insisted, so she gave in. Jack was probably the first, or one of the first, kids in St. Louis that was on the LTV, but I know of other families that since haven't been able to get their child on the LTV because Apria and/or the hospital won't "service" it. I know at one point, there were supposedly a lot of problems with getting supplies for the LTV and/or the LTV was recalled for one reason or another. But, I've never had a serious problem with either getting supplies or with the vent itself. My son will, most likely, be on the vent the rest of his life and if this is the case with your son, just keep insisting. There is no excuse for the medical professionals or the DME company not giving us what we want if there is no danger to our kids. The difference in having the LTV versus the Achieva is amazing. You can litererally carry the vent like a backpack. Don't give up until you get the LTV. If you have to, switch pulmologists until you find one that will support YOU!!!

Good luck!
Ann

Brandon & Angel · #8 01-11-2004, 08:44 PM

Hi....

Angel has the LTV 1000 here...She is 25 years Old but very Tiny.....*31 Pounds*......

Insurance would not cover a Vent for Home use where we Live....Nor did we have the Money for such an Item....

Friends of ours Looked into Easter Seals for us....They Paid for it...

If Easter Seals did not....We would still be Haning out at the Hospital more then we do....

B and *Sleeping Beauty*

Welcome to the Site!

Jacks Mum · #9 01-11-2004, 10:05 PM

Hi there,

My son has a HT50 Newport vent, It has a 10 hour internal battery, and weighs only 15lbs, so you only have to carry around 15lbs with 10 hours worth of power, for us is so convenient.
Tidal volumes : 100> 2200mls.

The LTV is a great vent as well, however if you want to travel without taking a large battery with you, A Newport is the vent for you.

Good luck
Jessica

TeraNicole · #10 01-14-2004, 10:49 AM

Hey! Zachary was put on the LTV900 when he was 2 months old at about 9 lbs. He's been on it since. Its very portable, about the size of a laptop computer and it has a backpack you can wear with it. I dont think you have to wait until 22 lbs, its just manufactueres thing. Good luck!