Elias has had a rough few nights with the days being so-so. He is very tired and just can not seem to get comfortable, I’m sure the NJ-tube is not helping matters. We have retaped the tube several times already since coming home on Friday afternoon. We are guarding that thing with our lives to avoid an ER trip should it come out. Elias is not very happy with the tape on his face and nose and I can not blame him. He has tried to play while here at home, but bless his heart he just doesn’t have the energy to do so. He has spent most of the time in the playpen watching Dr Seuss and The Muppet Show. Sometimes in the late evening he will be up for being rocked in the glider by Mommy, but during the day when we have tried to get him up and moving he quickly gets himself back into the laying position. We are still suctioning him quite frequently sometime with as little as 2-3 minutes between them. It is averaging out to about every 20 minutes and that is around the clock. We are needless to say exhausted, but still functional. One of the down sides since they changed Elias trach other than the fact he no longer can make the sounds he was able to before is we have to have him on a Pulse Oximeter. Now when the home care company delivered it to us the respiratory therapist showed us the connector wrap for the toe. We told him we had the exact same one before we moved, but rarely had to use it on him. Now it is a different issue. He explained that the manufacture changed the connection source so that only their connection wrap could be used, but there is a +/- 3% error margin and that has been a complaint. Now for those who do not know much about a pulse ox it monitors your oxygen saturation levels. Ideally they will be above 92%. Now what he was saying is that this +/- 3% at 92% (which is where it is set to alarm) could mean up to 95% or down to 89%. With Elias in the PACU for example if he hits 91% he goes on 28% oxygen no questions asked. So how can this reading be acceptable? The first night we were home and used it the first two hours the alarm went off almost constantly. We pulled out some of the spare probes we had left over from before the move and low and behold they worked. The readings were also much higher at 97%. So my complaint with this was how can anything like this be acceptable at +/- 3%. We could end up placing Elias on oxygen needlessly because of this discrepancy and desire to falsely inform patients of the accessories that work with this unit. The therapist also admitted they had received complaints about their reliability, but they had to use it anyway. So why were we told no other probe would work except for the one they gave us. Seems fishy to me. I am working on answers to this both from the home care company and the manufacturer. I can not wait to hear the lines I get.