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What can you tell me about a little one going home on oxygen? We do not like that fact. Any suggestions?
What can you tell me about a little one going home on oxygen? We do not like that fact. Any suggestions?
when noah was in the nicu one doc mentioned it and i flat out said NO, YOU WILL NOT SEND HIM HOME ON OXYGEN. he ended up staying for a total of 93 days then came home without it on Feb 25, 2008. a week later he got FLU type A and was sent to the picu for 2 weeks because he needed 02. he went to see his pulm shortly after coming home and he told me that it'd be best for him to be on it for a while and i couldn't really argue with him cause i want the best for my son. anyway, noah's 1st birthday was a week ago and he is still on O2. we have adapted to it and it's just a part of him. when i change his cannula i think he looks silly without it. if you do go home with it, keep in mind that they won't let you leave until you know exactly what you're doing and also, the company that supplies you O2 and supplies will give you a phone # so that you can reach someone 24/7 if you need to (in the beginning, we were on a first name basis with our contact). if you do decide to go home w/ it you can always ask me any questions you might have. i also have a lot of pics of noah on my myspace that you can look at. www.myspace.com/kevang715
please keep in mind: noah's case is very atypical. he was a 32 weeker and the average 32 weeker has no where near as many lung issues as noah. even a lot of micro preemies aren't on O2 as long as he has been.
you have to do what's best for your child and you. good luck! keep us updated on your decision.
What kind of oxygen system are you talking about? An acquaintance who I made through my parents after my son's birth had a 32-weeker who came home on a vent. That was a huge deal. The child is 8 years old today and has no lasting effects of prematurity.
My son (25-weeker) came home 5 days after his due date. He was on low flow cannula until he was 4 months adjusted. It is a big deal in the sense that it is necessary (but it is a walk in the park compared to vent). Cannula is not hard to learn. As angvbc says, they will give you the training until you feel comfortable with the equipment.
Some babies just need a couple whiffs of oxygen molecules to make them stay saturated appropriately. Our son's pulmonologist said that it has to do with how quickly the lining around the lungs become porous so that oxygen is transmitted easily from the air into the blood stream. For whatever reason, it just takes some kids a little longer to have the lining thin out a bit.
Coming home on oxygen isn't fun for baby. They have to have those tubes on their face. The oxygen molecules tend to dry out the nasal passage ways, which is a pain. And for parents, it makes everything take just a little bit more effort, making sure that the cords don't get caught on stuff. We ended up preferring to use the smaller travel canisters rather than the huge canister with the 50' cord, but everyone has their personal preference.
We were incredibly pleased with the diligence of the oxygen company. If they said that they'd arrive in the afternoon, they did (wasn't like working with the cable company).
There are some advantages to not pushing too hard on getting off oxygen quickly. For example, babies tend to have a harder time gaining weight if they've been pushed off oxygen a little too early. When baby is on his own for oxygen, he burns more calories. Consequently, when baby is on oxygen, weight gain tends to be more steady. That was the case with our son. His weight gain was excellent during those first four months at home. One of the NICU nurses said that she felt that the NICU staff sometimes tried to push kids off oxygen a little too soon.
We were relieved when we could confidently put the oxygen tanks aside. But we certainly don't regret not pushing our son off oxygen too early. He has done very well.
If your child comes home on oxygen, I recommend a couple things:
(1) We found that cutting band aids down to size held the tubes to our son's face better than the stuff offered by the oxygen company.
(2) We wished we had pushed for having a pulse-ox monitor. Our insurance wouldn't give us one. The case worker screwed things up and told the insurance that we had one when I told her several times that we didn't. She was in her own, spacey world. The insurance refused to pay for the overnight study, which was used to determine that our son's saturation levels were acceptable off oxygen. That was ironic. Without the overnight study, the insurance would have just kept paying for the oxygen. Luckily, the nice folks at Dependable Home Health (the oxygen company) lent us the equipment for free b/c they were fed up with how dumb Schaller Anderson (our insurance) was being. Long story short, push for a pulse-ox monitor before you leave the NICU.
(3) Get humidifiers for the rooms that baby is going to be in the most. Oxygen tends to dry out the nasal passages, which irritates them, and then the nose gets stuffy. A humidifier won't solve the problem, but it will help a lot.
(4) If your child was born before 30 weeks and/or has issues that are likely to suggest that he or she will need early intervention, make the initial consultation appointment with your state's EIP while your child is still on oxygen. When the development coordinators see the oxygen, it seems like that the visual of the oxygen gets the ball rolling fairly quickly. Some states have EIPs that try to avoid giving children therapy b/c they are tight on funds. So you never want to overstate your child's abilities; otherwise, therapists won't be assigned if baby is doing "too well." Consequently, we believe that our son being on oxygen when he was being evaluated helped us get his case taken seriously. I'm a big proponent of early intervention, especially for preemies who are in high risk groups. Our son's therapists have done him a world of good.
(5) Monitors. If your child isn't coming home on an apnea monitor, I recommend getting an Angelcare monitor (in the neighborhood of $100 from Babies R Us). The alarm on it isn't as loud as the one on the apnea monitor (which he was on for about a month when he first came home). But, it was loud enough to let us know if something problematic was happening. We felt that the Angelcare product was a good one. You can put Angelcare into the search engine of this website to get more comments about it.
That's all that I can think of right now. Good Luck!
My daughter came home on nxygen. I don't regret that in the least. She had been in the NICU for 4 months and was doing great otherwise. Home was the best place for her. SHe was also on an apnea monitor. She came home from the NICU on Oct 1 (her due date). She went to night /nap only oxygen in January and was removed completely on Valentine's Day. Her apnea monitor was then d/ced on March 14th.
It was an adjustment to get used to, having my daughter tethered in the house. HOwever, the tubing was long enough to go throughout the house...even upstairs. She was on a low flow nasal canula. The equipment was relatively easy to learn and we had a "backpack" tank for trips to the doctor's office.
It is very scary to come home at first with all that equipment, but you'll be a pro in no time. If your little one needs it, than stick with it. You'll be glad that your child is home with you when he/she can thrive! Like the PP said, make sure you ahve adhesive that works for your child and keep the nostrils well hydrated. Good luck!!
Wendy and Kylie...a rambuncious 2 1/2 year old who was born at 24 weeks...although you'd never know it
Our son was a 25 weeker who will be one (actual) on Thursday came home on oxygen as well. My husband was not a happy camper and it scared us too and we did not like it! However, we were very involved in our son's care (sadly more than most around us) and asked more technical questions about his care than they liked, but we saw he needed it and saw his x-rays and knew it was best for him and we would just have to deal with it. We certainly did NOT want to end up back in the hospital after 108 days of constantly being there.
It is tough to accept at first for many because we all want our babies to be 100% when they go home, but so many just need that little extra help for a short time. They will make sure you are comfortable with everything when you go home and it'll be over before you know it. You have a good resource of people here to help you through it too!
Eli came home on oxygen and it wasn't anything more than a hassle. We had a 25 ft. tube so we stayed in our little circle. After the NICU, it really was a piece of cake.
Eli came off after 6 weeks which kind of surprised me. At his last BPD clinic visit he had level of 97-100 while he was screaming his head off because the pulse ox monitor on his toe just generally ticked him off. This from a kid that would desat if you touched him!
Thank you all for taking the time to respond. I am the grandmother and have printed our responses for my daughter. Hopefully Dameon will be home soon with or without oxygen.
Adayah is a 23 weeker and she came home 6/21/08 on 100% oxygen and she is still on oygen, down to 1/8. The only hassle is carrying her and pulling the tank.
My son, Dale, left the NICU on Oct 6. He had a room-air trial right before being sent home to determine if he required oxygen. He lasted 22 hours on room air. At the end of the trial, I could tell he was struggling and he was just worn out from working so hard. So, he was sent home with oxygen. The medical supply company explained how to use the oxygen, which was a little intimidating in the beginning. We have two big tanks (one for downstairs and one for upstairs). Both are on wheels so that we can wheel it around when we move him. We also have several small portable tanks that came with a carrying case. We are now used to the fact that he is on oxygen. We have been weaning him off of it - so he generally only needs it now when he is sleeping. To me, having the oxygen and monitor is a relief because I know they are helping him. Just remember, if your baby comes home on oxygen, it will be temporary. As your baby grows and gets stronger, you will no longer have to worry about it! It is just one more hurdle to overcome, but you will get through it!
BTW, we had the oxygen company meet with us the day before our son came home. We did an overnight with our son on the home oxygen equipment, while he was still in the NICU. So we knew that we could handle the equipment. The overnight was very useful. Gave us some confidence too.
Thank you all... I will let you know what happens.
I dont think is worth all the hassle becuase my daughter took hers off all the time . So really I dont think it helped her in anyway because it was never on for more than 5 mins at a tine
Our neonatal team gave us the option of coming home on oxygen. I was scared about what it would take but it got us out of the hospital at least a month before we would have been if we waited and every day in the hospital is another opportunity for increased exposure to infection so we were happy to leave.
I wasn't thrilled with our home oxygen company because i don't think that they had a ton of experience with children on O2 but we worked through the issues as they came up.
It took us a couple of days to really feel comfortable with the equipment and there were many times when I overwalked the lenght of the oximeter cord and pulled it off the table or counter but you get used to it pretty quickly.
Having the oximter at home with us was really nice because it took away alot of worry about if she was breathing which all parents worry about. We actaully continued to use the oximeter for another month after the oxygen was gone at night because I slept better knowing that if anything went wrong in the night, I would hear the alarm. We finally got rid of it when she was moving so much that it was false alarming all of the time.
If you do go the oxygen route, make sure that they give you long enough tubing. Originally we only were given 25 feet until I requested the 50 footer which gives you a lot more freedom to move in the house.
Good Luck.
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