Any home O2 weaning success stories??

jennbent

DS came home from the NICU 3.5 weeks ago on 1/32 of a liter O2 round the clock and 1/16 of a liter for feeding and car seat rides. This past week we went to the pulmo's office for a sleep study to be weaned off and DS did not pass. In fact, it was determined he needs more O2 than what he was sent home on. So he's now on 1/16th round the clock.

We were assured in the NICU that he's on such a small amount that he "won't be on it for long." I asked the pulmo why he's regressing and he said he's not, it's just that he's getting a lot bigger and requiring more oxygen to move around and be more active than he was in the nicu. I just worry though that it's going to be a year from now and he'll still be on it. However, his BPD is considered mild. Knowing that, is there anything other than time, growth, and good nutrition that I should be hoping for? i.e., breathing treatments or something??

Don't get me wrong I am thrilled to have DS home after 85 days in the NICU, but I'm so ready to have a wireless baby. Not only does he have the o2 but he's also got an apnea monitor and a pulse ox. I feel like a mobile NICU.

I know every baby and every situation is different, but if you came home on o2 and are now off of it, I would love to hear your story. How long did it take, how big was your LO etc.

DrRx

My daughter came home from the NICU after 83 days on oxygen, the pulse ox, and an apnea monitor.  She started like yours with 1/32 usually with 1/16 when she was eating.  We slowly weaned off from it.  First, it was 1/32 all the time.  Then, it was 1/32 only when she ate and slept.  Then it was just 1/32 when she slept overnight.  Eventually she weaned off of it completely.

We got her home 4/26 and saw the pulmonologist on 5/25.  On 5/25 he said that she only needed the apnea monitor overnight and oxygen only when her sats were below 92.  So, whenever she was higher than that, we took the canulas off and put them back on when she dipped below that.  We didn't tape them on to her face--we would loop them behind her ears and had the tie in the front of her neck.  It made it real easy to take on and off.  On 7/22 she didn't need the oxygen overnight and hasn't needed it since.  We had a follow-up appt with the pulmonologist on 7/31 and he said to spot check her pulse ox a couple of times a day for a few more weeks, and then only do it if she looks like she is having labored breathing.  She hasn't needed oxygen since then.  So, it was about 3 months before she was completely off the oxygen.  We're still on the apnea monitor overnight, but it will probably FINALLY be discontinued after our next appt in October.  

It was SOOOOO nice to finally have a wireless baby for most of the day.  And, only having to use the apnea monitor overnight isn't really all that bad.  She was almost 6 months old and about 11 pounds when we finally got off the O2. 

GL! 

jennbent

DrRx:

My daughter came home from the NICU after 83 days on oxygen, the pulse ox, and an apnea monitor.nbsp; She started like yours with 1/32 usually with 1/16 when she was eating.nbsp; We slowly weaned off from it.nbsp; First, it was 1/32 all the time.nbsp; Then, it was 1/32 only when she ate and slept.nbsp; Then it was just 1/32 when she slept overnight.nbsp; Eventually she weaned off of it completely. We got her home 4/26 and saw the pulmonologist on 5/25.nbsp; On 5/25 he said that she only needed the apnea monitor overnight and oxygen only when her sats were below 92.nbsp; So, whenever she was higher than that, we took the canulas off and put them back on when she dipped below that.nbsp; We didn't tape them on to her facewe would loop them behind her ears and had the tie in the front of her neck.nbsp; It made it real easy to take on and off.nbsp; On 7/22 she didn't need the oxygen overnight and hasn't needed it since.nbsp; We had a followup appt with the pulmonologist on 7/31 and he said to spot check her pulse ox a couple of times a day for a few more weeks, and then only do it if she looks like she is having labored breathing.nbsp; She hasn't needed oxygen since then.nbsp; So, it was about 3 months before she was completely off the oxygen.nbsp; We're still on the apnea monitor overnight, but it will probably FINALLY be discontinued after our next appt in October.nbsp;nbsp;It was SOOOOO nice to finally have a wireless baby for most of the day.nbsp; And, only having to use the apnea monitor overnight isn't really all that bad.nbsp; She was almost 6 months old and about 11 pounds when we finally got off the O2.nbsp; GL!nbsp;

Thanks for sharing your story! Our situations do sound pretty similar! Hopefully we will be able to kick the o2 just as quickly as you guys did. It really helps with my mental sanity to hear success stories like that. : Like I said, I know every baby is different, but I am hopeful we'll get there once DS gets bigger. He just hit six pounds today. In the meantime I should probably try to stay off google. There's way too many people on there with three year olds still on oxygen.

kelkel09

My DS was in the hospital for 250 days and has a trach. It took until he was about 6 1/2-7 months old to wean him off the vent. Then, he was on 28% 02 round the clock. He came home at 8 months old. Around 10 months old, the pulmonologist said we could wean the oxygen so he now only gets it as needed. He can go several days without it at all and then may need it for a little while during sleep. We are hoping to get him off the oxygen completely so that they can start considering taking the trach out, but I think we still have a little while. 

Honestly, I think sometimes it's just a waiting game. Your LO might just need time to get a little bigger/stronger. I know it's frustrating but he will get there. 

 Best of luck!  xo