Coming home on oxygen?

ashleymarie512

DD is 37 weeks corrected and still on 1/2 a liter and around 30% oxygen. Shes failed her oxygen challenges and some of the nurses are guessing she'll come home with oxygen, though we don't eve have an estimate of when that will be. We're working on nippling right now and she's doing four out of eight feeds with a bottle and doing pretty well.

Question--those of you who came home on oxygen, what was all included in the equipment, was it a total pain in the ass and what were the most frustrating parts? Just trying to mentally prepare in the event it ends up happening.

Thanks in advance!

kari.sandall

No experience with this but I was told the day before my daughter came home that they were going to send her home on oxygen. We showed up to take her home and they said she didn't need it after all.

kwalk1

When DD had to come home with it the hospital had to call a company to bring equipment to our house. We got a huge oxygen machine with another machine on top of it to fill travel tanks, 2 travel tanks, a bag to hold the travel tanks, a huge oxygen tank in case the electric went out, and a pulse ox monitor. They also included tender grips for her face, extra tubing, and the foot monitors for the pulse ox machine. All the stuff really is a huge pain, especially if you have to go somewhere. You have to take the pulse ox machine, plus a travel tank and an extra. I hated the tender grips and the pulse ox wraps for her foot, as they never stayed sticky long enough and fell off. Plus our insurance only covered 4 foot monitors a year. DD thankfully only needed it for 2 more weeks after she came home, but all the junk is still sitting at our house in the way...just in case. I really hope your LO doesn't need to come home on it!

Brummy14

DD2 came home on o2, and was on it for about 4-6 weeks (I don't remember exactly - those few months were a complete blur). She came home on a whopping 1/8th liter.

We had two tanks -- a large one that could last well over 24 hours at 1/8th liter, and then a smaller one that I think could get 8-12 hours (maybe more). We had a compressor that filled the tanks (and was also what we attached her to at night). 

We didn't leave the house other than for dr appts those weeks -- since it was the middle of flu season and they were 29 weekers, so that helped with the logistics of everything. The challenge was being restricted to the length of her tubing. One of them was a generous 25 feet, but that still only kept us in one room the majority of the time. 

As PP mentioned, the tendergrips and, more so, the pulse ox monitor stickers were a pain. Insurance only paid for one of those pulse ox stickers a week, so we went to crazy lengths to get it to work that long! 

Other than that, the o2 was really no big deal (I know it sounds crazy that it wasn't). I was INSANELY overwhelmed by all of the machinery and the logistics of it all, but we quickly settled into a routine, and even more quickly she was just off of it all together. 

GL to you -- and hopefully your LO will be home with you soon!

ashleymarie512

Thank you! I know it's not the end of the world and id rather her come home on the o2 than stay in the hospital for just that. I become overwhelmed very easily and I'm already stressed so I figure the more info I have to process and prepare the better!

Jenrn2203

It's easy our ex 24 weeker is now 4 months adjusted and 8 actual and is on 1/2 L still , chronic lung disease baby, it's not horrible we don't take the pox machine and u shouldn't have to unless she is constantly dropping or having bradys. We do spot checks daily , they r on 100% oxygen so her pox should never drop. The pain is switching out portable tanks when at dr appts they don't last long and at home the length of tubing is 25 feet but never long enough so I'm constantly pushing the big tank around when I want to go to diff rooms, oxygen is not the end of the world by far

DrRx

My daughter, a 26-weeker, came home on a sliver of oxygen -1/32--but she had to stay on oxygen to keep her sats above 92.  We came home on 4/26 about a month later we were only needing to use the oxygen when her sats were below that, which was when she slept or when she ate.  Then, we weaned her off the feeds, and then finally off her sleeping.  We never bothered with the tendergrip things on her face.  We made the canulla tie in the front, and it made it easy for us to remove it and put it back, and it stayed relatively well in place when she moved around.  I actually got the idea to do it like that from House (saw an adult patient with the canullas that way) and thought to give it a whirl.

We had a big, huge concentrator in our living room, which was our main headquarters anyway.  We had a 25' tube length.  She slept in a RNP from the day she got home for about a month and a half when we transitioned her to the crib.  When she was using the oxygen overnight, we would just use the portable tanks when she was in our room or if she was in the crib.  They started us off with 2 portable tanks, but said that up to 5 portable tanks a month was reasonable to request/use. 

It was a bit of a pain to go out and about with the oxygen tank, but we just put it under the stroller basket when we went to a store (rare) or when we went to my family's house.  We had a bag that carried her apnea monitor and her pulse ox.  She didn't have to use the apnea monitor (except for sleep) all the time except for that first 6 weeks home. 

To make the pulse ox things last longer, be sure to get some medical tape from the hospital and use it to put at the end to make it stick.  They might also give you a type of cover to put over it.  If not, be sure to put a nice newborn sock on which will help keep the cord aligned and give you better readings.  Ask the NICU nurses for any tricks of the trade with the pulse ox and have them show you what they do to make the strips last longer. 

Although not ideal, having the oxygen and the equipment wasn't as difficult as I had feared it would be.  You will be amazed at how you will be able to handle it.  GL!!

ashleymarie512

Thanks for the info! We were told today it's most likely she will come home on it.

She was taken off the blender and put on wall air today at 1/2 liter. She did great and satted at like 100% during her whole bottle. They're hoping the extra oxygen will help her get the hang of nippling so she can come home! Is the first time they've actually mentioned sending us home and I cried I was so happy!