A couple of general questions from a newbie...

[Bodie's Dad]

I have a few questions as a newbie for some of the more experienced parents here:

1. We do trach changes once a week, and are re-using Bodie's trachs. I clean them by boiling them for 5min in distilled water in a stainless steel pot just for this purpose only. After, I use sterile gloves to put them back in a sterile bag. Should I throw them away at some point? What is the useful life of a trach? We do trach changes once a week.

2. Bodie is resistant to sitting up & I really think it would help his breathing since he is laying down most of the time. In your experience, is laying down where he is most comfortable detrimental?

3. My Insurance just cancelled Bodie's policy citing that he's maxed out his lifetime benefits. He's now on Medicaid only until July when he goes back on my Insurance due to the new Health care law. I'm very worried that he will be denied medicines, or Doctor visits, etc.. now. Has anyone else been through this & how did you adapt?

Thanks in advance.

[destinyandmiracles]

Not sure what kind of trachs you use, but we were told to never boil the trachs.

I wash my sons in soap in water really well, then rinse. I then place in 50/50 water and vinegar for 15 minutes, rinse again, dry and then put in a plastic bag.

Ashton didn't really like sitting either as he was in the NICU for 9 months, so pretty much was laying in his bed. I however made sure that he sat up as much as I could get him to as time went on. So yes, I would work on getting him to spend some time sitting and wanting to.

As for insurance I can't help you there. We are in Canada and things are very different here.

[Lifeisgood]

We do trach changes once a week, too. But we get four a month from our DME, so we don't reuse.

We struggled with sitting up as well. We used a bumbo seat a lot. I had no idea that a small baby could use them, too. It looks too big. But, it really helped. It takes a lot of work for them to sit up. So, start with small amounts of time in the seat with breaks. Harlie was just over a year old when she could sit up on her own. He will like it better when he builds some strength. And yes, I think laying down all the time can cause a lot of problems - respiratory and developmentally. Does he get physical therapy?

Harlie has private insurance and then Medicaid secondary. We've never had a problem getting anything she needs. Even when our private doesn't cover something.

Take care,
Christy

[jamie]

i wash Evan's trachs in hot soapy water and air dry. i was told they are good until the turn yellow. but i only wash them three times before throwing them out. i am afraid boiling them would bend the plastic.

my son got pneumonia from laying in bed too long. i would suggest trying to bet one of those bumbo seats.

[Bodie's Dad]

Thanks for the replies, I should have clarified that his trach is a Neo Bivona 3.5 and the Hospital told us to boil them as stated to clean them. The directions in the package say boiling is ok for use in a home setting, up to 5 times.


Another issue we are having is home health. I call with plenty of time to get supplies & they have twice told me they were coming with supplies & never showed up. Very frustrated.

We just got a bumbo seat & are working on getting him used to sitting a little at a time:

[destinyandmiracles]

Oh, he is sooo sweet!!!

I forgot to say, we do reuse our trachs once.

[Momoffive]

We've used Bivonas for 13 years next month. I think that recommendations from the company have changed a bit over time (for example, frequency of changes, number of reuses). We have never actually changed more than once per month, with the exception for change after illness (very very few since about age 4-5), and only very very occasionally for a blockage. Anyway, the current package insert says each trach can be used for "up to 29 days" and "may be reprocessed up to 10 times." And then of course the provisos go on to say that tubes "must be cleaned /replaced regularly to suit individual patient's needs" and "not to use a tube that is cut or damaged."

As far as cleaning, we have always followed the package insert with one exception (which I'll note). So, insert says to "gently wash the tube(inside and out) and the obturator in a clear mild detergent solution using a soft bristled brush - we NEVER used a brush, were told it was unnecessary and could cause damage - I would have used one if one came with the trachs for the purpose. Rinse thorougly . Excessive scrubbing, scraping or stretching will damage this device (hence my reasons for not using a brush!) The insert then goes on to say you should "allow the tube to air dry completely and store with the obturator in a clean plastic bag - and I guess "sanitize" closer to time of use. We followed the sanitzation directions in the insert, but right after cleaning, so "Place the tube and the obturator side by side in a pan of rapidly boiling distilled water. Cover the pan and REMOVE FROM HEAT. Allow to cool prior to use and handle only by the obturator handle and the neck flange - so, those last steps, I do, then allow to air dry, then store - now, I realize that in the air drying, perhaps the trach is open to particles in the environment (I lay it on and loosely cover with a paper towel.) I guess the one thing that I really do differently from some people is that I don't actually BOIL the trachs. So, fwiw, there's our method that has worked well for a long time, easy to do.

I love your profile pic - I know that the Bumbo chairs are recommended by a lot of PTs and seem to be a good alternative to an expensive medical chair, if it suits your purposes.

[drct1245]

You can also clean trachs with 1/2 & 1/2 mixture of peroxide and sterile water. Let it sit overnight rinse well and store. After a few months, you can sometimes see some wear and tear. Before storing, look at it closely for any cracks or signs of wear and tear. We got 2 trachs/month and had spares in the to-go bags, so once we had a sufficient comfortable stash we started rotating them out.

Maxing out insurance, if you can get information online, I used to be able to copy and paste the amount paid from online to tally it up. If you don't have that, you can go through the EOBs and tally up what had been paid. It's a pain, but I am a cynic when it comes to that and don't believe what insurance tells me. For some reason, I thought the insurance went into effect last January for kids... maybe that was just pre-existing condition.

Finally, on the supplies, when they tell you they will be there @ x time, if they aren't there, call. If you don't get answers, call a supervisor. If you aren't happy, shop around. If you live in metro area, there are usually lots around the area. One thing that many of us have learned, sadly the squeaky wheel really does get the grease.

[Tiggerifficfun]

We used to clean our trachs in soapy water and than the 50/50 vinegar solution and store them in a ziplock bag and put the date on it. We would change the trach once a month and never needed to reuse them. The used trach would be our back up in the diaper bag and we had 2 trachs pinned to the wall for emergency. We had 2 trachs because one was the current size and one was smaller just in case we couldn't get the current size in.

Inusrance and Medicaid are very frustrating. It took is 6 months before they approved us for medicaid. In the meantime our insurance gave us extensions so that Clint wouldn't go without coverage. Have you asked for an extension? you have to ask they won't offer! They more or less try to "bully" you. Don't just accept what ever they tell you. They will try to see how much they can "push" you and what they can get away with. You need to push back!

As for the supply company - it seems to me they don't care much about their patient or they wouldn't be putting your child in danger by not delivering the supplies. Maybe you need to find a different company.

Good luck

[Caleb'sMom]

welcome- I am fairly new on here too and it has been such a wonderful resource to me.

our little one was in the NICU for a while too- sitting up, position changes in general have taken time to tolerate. He does seem to be more comfortable in an upright position and sats very well in an upright position. So we are practicing sitting with a bumbo seat too. I think it's just going to take time- these kids laid on their back in beds longer than kids without issues.

cant help on the insurance- but I do know there are tons of programs through the state, government and private that can help out. You have to reaserach them though OR if you had a good case manager in the hospital ask her for some direction. Good luck. your little one is so cute!