Question??

[againes304]

JJ will be coming home very soon and is vented 24/7, he uses anywhere room air to 25 % 02. If he gets upset his sats do drop and he does require some more 02! Of course he will have 02 at home. my dme will not provide me with a pulse ox. Do all of you use these? I can tell when JJ's 02 drops by his color and breathing but I like to see it for myself the number! I cannot believe a child that is on a vent and 02 with cld cannot get a pulse ox for home! Grrrr

[Christamae]

Insurance can be so stupid. We had to buy my pulse ox...

[JWorthington]

Sam came home on O2, but not on a vent. Our pulm didn't want him to have one either. our community nurse loaned us a small hand-held one that we have always used. no good for leaving on all the time like the big one though.

[llwilliams8]

WHAT!!!! I would demand a pulse ox before I go home. You can not be looking at him 24/7 to see if he is desatting. My daughter desats frequently so we have to have her on a pulse ox 24/7. The other day one broke and so we had to wait for the DME to bring us another one and so she was off for like 4 hours....we could get nothing done and just sat there watching her..thankgoodness I had a nurse that day to sit with her so I could fix dinner but if I did not have one there would of been no way I could leave her side. You may want to check out craiglists or ebay to see if you can find a cheap one to purchase. I think it's a must have and I'm shocked it's not being required by the hospital before you go home. You need to be able to catch the desat before it gets low enough for him to turn bluish. We know when Autumn hits the 70's we better get the O2 turned on before she gets blue. So, my advice is fight for one or take it in your own hands and buy one.

[Wooders80]

Yikes! I'd be very reluctant to leave hospital without a pulse-ox. We've had one since we were discharged. I couldn't imagine letting Dominic sleep without one. It was what reassured me and gave me confidence that Dominic was ok in the early days when we were home.
I'd have thought if your child is vented it would be even more important to have a pulse ox too.

[TommysMommy]

Tommy was a heart baby with wonky sats and the doctors told us to look at him and not the numbers. Yeah, yeah...until he became O2 dependant and I threw a little hissy fit during rounds the day before he was supposed to be released. I had my pulse ox that day for "spot checking". The funny thing is, they kept him on an apnea monitor from day one, because they were worried about his heart rate and not his O2 sats.

JJ is on a vent. You at least need a pulse ox for sleeping. Is the DME denying you or is the DOCTOR not writing an order?

Look into Medi-Home care in Etown as a DME. We used them in Charleston and never wanted for anything. (except trachs and that was a Medicaid issue, but that's another story)

[Ann]

You absolutely should have a pulse-ox. The issue isn't the DME, it's the discharging physician. Demand that he or she order a pulse-ox. A lot of parents have had to request (demand) a pulse-ox before they could get one. Please be adamant about this. In my book, it's malpractice to send a trach baby home without a pulse-ox.

Good luck.

[kirafaesmom]

I agree whole-heartedly with Ann. I would refuse discharge until you have a pulseox IN HAND...in my opinion, it can't wait the day or two (or more) for your DME to get it to you.....I wouldn't even consider caring for a trach baby, let alone a vent without it. All it takes is one accidental midnight decan....

[drct1245]

I agree w/ the other... demand a pulse-ox. Depending upon the child and what % the drs want you to maintain, you can tell, but until you get comfortable, I would suggest definitely having one.

Also, as you work towards getting discharged, get the list of supplies you will be receiving and then compare to what you use in the hospital. We were missing quite a few supplies!

good luck!! Hope you are home soon!

[bryantem]

I was in the same situation. I went home with an apnea monitor and not a pulse-ox. I was told that the NICU likes to send kids home with the apnea monitor and the PICU sends them home with the pulse-ox. When she was readmitted, I talked to everyone who would listen about us needing a pulse-ox. Sure, the apnea monitor did it's job, but by the time it went off, she was already turning blue. If they are sending you home with an apnea monitor, at the very least you can have them input a pulseox in the seetings. I however, told them that I wanted a seperate pulseox and did not want to use the one on the apnea monitor. Sure, you can tell by looking at them when their sats are low, however the can be below the "safety zone" and their color is fine. For instance, Addisyn can be at 85, and be pink as can be.

[lynn]

We dont use one during the day he is too active, and I am usually in sight of Joseph, and if not, I am not away for more than a minute of two, but.... I would never be able to sleep without one. Our DME insisted we have one also because if the vent pops off of the trach and the end of the circuit is covered by anything(pillow, blanket, toy, baby body ; also certain HMEs ) it will not sound an alarm for low pressure or disconnect and there is a great risk of suffocation(especially while baby is sleeping or is not able to roll over). (try partially holding a thumb over circuit on LTV and you can test this).. Will your pulmo or ent write a script for it? He is vent depend-- doesnt that have any signifigance in their thoughts?

[Niff]

I agree with really pushing for that pulse ox. Like Lacy said, you can't watch your child 24/7.


We dont use one during the day he is too active, and I am usually in sight of Joseph, and if not, I am not away for more than a minute of two, but.... I would never be able to sleep without one. Our DME insisted we have one also because if the vent pops off of the trach and the end of the circuit is covered by anything(pillow, blanket, toy, baby body ; also certain HMEs ) it will not sound an alarm for low pressure or disconnect and there is a great risk of suffocation(especially while baby is sleeping or is not able to roll over). (try partially holding a thumb over circuit on LTV and you can test this).. Will your pulmo or ent write a script for it? He is vent depend-- doesnt that have any signifigance in their thoughts?

I've had this happen a couple times (the vent popped off but not enough to say it was disconnected). Luckily I was in the room and heard a difference (typically we can hear her breathing through the vent).

[babybear]

I wouldn't leave the hospital without a pulse-ox...not with a vent-dependent baby. No way, no how! Gabriel's color doesn't usually change until he's really in trouble, and he's not on a vent. What DME company do you use?

[Garrett]

They sent us home with a pulse-ox and apnea monitor. We prefer the pulse-ox and have actually sent the apnea monitor back. I'm so glad we have one because like the others have said, it gives you a warning before your baby is blue.

Melissa -- Mom to Breonna 4 yrs and Garrett 8 mos (Spina Bifida, trach and vent dependent)

[againes304]

I pushed and pushed for pulse ox and I am so proud to say that it will be delivered to the hospital along with his vent! We are planning for discharge on the 25th so excited!!! The 27th will make 7 months in the NICU! So glad to get out of there!!!!!

[Ann]

Bravo! Hopefully because you pushed, the next family won't have to. Best of luck as you transition to home. :)