Oxygen at home

Hi all! Joshua is still in the NICU, but the discussions have actually started regarding him coming home. One of the things mentioned was that he could come home on oxygen. I know many of you have had the same thing. My questions are, how does this impede movement around the house? How long was your little one on O2 before he/she was finally taken off? What kind of monitors do you have to use at home? Did your insurance pay for it all??

Joshua has maintained low settings (average between 21-25%), and I knew this could be a normal part of coming home and still hope that he doesn't, but I also want to be prepared. So can you all tell me of your experiences?

Thanks
Dianna

Report post

6 replies. Join the discussion

We have a company that delivers the oxygen and we also have a pulse oximeter. The oxygen itself has been no problem, but there has been some argument over covering the pulse ox. The most annoying part is tripping over the tubing, or having friends with young kids over who think it is a toy. At home, we have a larger tank on a wheeled cart, and then use a very long piece of tubing that allows us to move around most of the house. We have a portable tank in a bag for outings. The hardest part is when she is fussy around dinner prep time, because you have to keep them 10 feet from things like a hot stove or other high heat source.

Report post

My son, Nate, 25 weeker came home on July 18, 2005 and was on oxygen until January 24, 2006. Some children are on it for a much shorter period of time and some are on it longer. I didn't think we'd ever get off and yet now it's a distant memory. We had the O2, an apnea monitor, and a pulse oximeter. The oxygen was the only thing he had to be on all the time. We had 2 large tanks, one for upstairs and one for downstairs and long tubing which allowed us to pretty much roam over most of the house. In the beginning when he was more O2 dependent it was a little unnerving switching him from tank to tank but we got used to it. We also had plenty of portables for walks, etc. We had a repiratory therapist who came out once a month to check the equipment and make sure that the long tubes were putting off enough oxygen (since it had to travel so far there is a chance that he wouldn't get enough of the concentration but we never had a problem). I am fortunate because my father and several family and friends actually worked for Robert's Oxygen who supplied all of our equipment. Our insurance covered all of the cost except our deductible when it arose in Jan. It's overwhelming but you'll get used to it and you'll be so happy to have him HOME! God bless.

Report post

Insist on 50-100 foot oxygen tubing with your stationary tank at home. We have a smaller home but it was not a problem moving throughout the whole house once we got the longer tubing. Also, we had plenty of portable tanks so that we could leave the house(They fit great in the bottom of the stroller.) As for the monitors, they had a bag where you could either carry or also put in the bottom of the stroller.

As for payment, Connor came home on medicaid for the first year so all was paid for. You might check into that. Since he was so small, he automatically qualified for SSI when in KS gives you auto medicaid for 1 year. It's no disgrace, especially when you have a $350,000 hospital bill to worry about. Your hospital social worker should be able to help you.

Report post

My twin daughters were born at 29 weeks (2# 12 ounces and 3# 1/2 ounce). One came home on oxygen and both came home on heart and lung monitors.

What I didn't know then and know now is that we were originally given the ADULT oxygen concentrator. The concentrators look exactly the same and for over one month my daughter received 1 liter of oxygen when she should have been receiving 1/8 of a liter. Please make sure the agency responsible for delivering and setting up your equipment does just that. That did not happen for us. The delivery company shoved it in the front door and my husband and I set everything up. It later was discovered that should have NEVER happened.

As for mobility around the house. We left our daughters in the nursery for the first few weeks. They were so small (5 pounds) when we brought them home it was safer and easier to keep them in the nursery. We also had 50 - 100 feet of tubing around the house. Be careful of moisture in the line if you have a damp house. There's an attachment you can add at the end of the tubing to connect the tubing to the nasal cannula. Be sure to ask for it.

Traveling to appointments was tough with carrying both girls, both monitors, diaper bags, and an oxygen tank. The Lung Center actually provided us with the documentation to obtain a handicap parking tag from the town. What a difference and life saver.

We didn't allow visitors, especially children, for many weeks. Our friends and family understood. I hope this helps. If you have additional questions I can be reached at Penguin269@aol.com. Feel free.

Congrats on the news of your baby getting to come home soon. Enjoy everyday. They grow up so fast.

Robyn

Report post

Caydence actually came home with no oxygen but then we found out that she has a condition that requires oxygen for a long period of time. We have the machine that actually makes the oxygen in our home with a long cord, and we have small portable tanks for when we are out and about. It gets in the way sometimes and is a hassle to move around the house, but as long as she is doing ok i dont mind it at all. All of our stuff is paid for through insurance and you shouldnt have many problems with the insurance at all. Caydence too qualified for SSI and has medicaid for the first year. Its a fairly easy process to go through, just ask your social worker to help!!

Report post

My son Anthony just came home last Friday (24 weeker). He's on oxygen and the heart monitor. My insurance paid all of the expenses. He's doing pretty good on his breathing but his nose camula keeps on coming off no matter what I do. He pulls it off whenever he can. I have to put socks on his hands so he wont have a grip. It drives me crazy!!! I can't wait until he gets off. But I will have to learn to have patience because this is what he needs. lol

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Discussion topics

Preemie links and resources


Narratives from the NICU -- Read the special report

Community leaders