Monitors at night

[Caryn]

My daughter came home with an apnea monitor and pulse-ox. The apnea monitor was continuous at night, but was replaced by the pulse-ox continuous at night when she had pneumonia and her sats were all over the place. She has been very stable (actually sats above 96, but I don't want to jinx us) for the past 4 months or so. Even when she was sick, her sats still remained good. She has not been on oxygen since October.

My daughter is such a flipper when she sleeps that there have been a number of times (I'd say at least 5 in the past month 1/2) that the pulse-ox cord is wrapped around her neck! It scares me to death! I have tried everything from moving the pulseox to the foot of her crib and just leaving a minimal length. When I do this, it pulls off constantly because there is not enough length for her to do all her squirming. Also, because of her flipping, it is constantly going off that her sats are low (when she's really just moving around).

When she was in the hospital, we had a tube (can't really explain) that we used to basically hold her in place (she has serious reflux and they had the mattress lifted so high that she would slide down without this tube). I have attempted to use this to minimize the room that she has in her crib to flip around, but she still manages to be all over the place.

Does anyone NOT use a monitor of any sort at night? I do go into her room a number of times per night and we have a video/sound monitor that we use so I can actually see her when she's asleep.

Does anyone have any suggestions? I'd really appreciate any tips.

Thanks.

[angelbaby]

my little guy goes all over the bed we put the probe on his big toe and put a sock on, it works for us good luck

mom to 19 month old

[Ann]

I understand your frustration with the pulse-ox cord and false alarms, however, my advice is please do NOT not use the pulse-ox. Â*Without it, you may not know if your daughter's trach becomes plugged or dislodged. Â*Although you check on her through the night and have a video monitor, it only takes a few seconds for terrible things to happen. Â*I know of a family who stopped putting the pulse-ox on their son for the same reasons as you describe. Â*He died in the one hour time period between when his night nurse left and his day nurse came on shift. Â*Because he did not have a pulse-ox on, his parents didn't know there was a problem. As you can imagine, the "what ifs" will haunt his parents for life.

I'm not trying to scare you, just make you aware that bad things can happen when you are talking about a child's airway even when things seem okay most of the time.

My son doesn't move at night, so I don't have any suggestions. Â*Hopefully others on this board with active children can offer some advice for keeping your daughter's neck and the pulse-ox cord separated at night.
http://www.tracheostomy.com/iB_html/non-cgi/emoticons/biggrin.gif
Ann

[cariaad]

We had a similar problem for a while, and what we ended up doing was to run the cord from the probe UP Alli's PJs (she wore the snap front long john type) and then out a small slit in the back. She was all over the bed at that time and the tubing fro everything was a nightmare. But this worked for us, it kept the stuff at her waist level. She'd still get tangled up but at least it wasnt around her neck. Deb

[mistymitcheson]

Caryn,
Has a sleep study been done? The reason I ask is that Holly(3yr old) has the same problem with tossing and turning and I spoke with her ENT and Pulm. doctors and they both feel she is having apnea and will always need a CPAP machine when she sleeps. I saw that you were sent home with an apnea monitor, if a study has been done, how long ago? YOu may want to say something to the doctor about her restlessness.

[Judy]

Amen! Put it on the big toe and run it through the p.j's as suggested. You might also tape it down on the foot or ankle. If the pajamas do not have feet, put socks on the little mover. We have the same problem with the feeding tube for Brady. He is from end of his crib to the other and we were finding his feeding tube wrapped around his neck. It goes through the pajamas and taped if necessary. It has helped.

Please do NOT remove the little one from the pulse ox. I finally agreed to let Kimberly come off the Apnea Monitor when she was 6 years old. I said O.K. she has not had an episode in years. Before they could pick up the machine, she had a sleep study.......she has sleep apnea. The reason the apnea monitor was not picking up was that her episodes did not last the 20 seconds it was set for. Hers only lasted about 17....BUT in that 17 seconds her sats were into the 70's. So her Pulmonary doctor switched her from the Apnea monitor to the pulse ox. She is now on CPAP also.

I would never be able to sleep well if Kimberly and Kenya were not on their pulse ox machines. So at night we have 3 feeding pumps running and 2 pulse oximeters with the room monitors in both bedrooms and the parents monitor in our bedroom and downstairs. We got the monitors that have 2 receivers each. We also have the oxygen concentrator and compressor running all the time and I have to give breathing treatments at 10 pm and again at 2 am. So if anyone likes to sleep in a very quiet house.....this is not the place to visit.
Ha!

Good Luck and keep us posted on how you manage to keep the little one on the pulse ox sensor but away from the neck.

Love, Judy and the 5 special Angels http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif

[Caryn]

Thank you to everyone that responded. I will have to try some of the suggestions (including talking about the sleep study). She has not had one since she was in the NICU (1 year ago!).

Also, from the responses, I will definitely continue to leave the monitor on her!!

Thank you again for your suggestions.

[Doug-Iowa]

I went to check on Mason a while back and he was up (for how long I don't know) and his trach was out and the cord was wrapped around his neck. Scared me to death. So how I fixed it was I wrapped the cord around a spindle of his crib and left enough slack to let him move, but not enough to get tangled up in it. I also tape the probe to his foot securely with some nexcare tape.

Jarita