We brought Alex home finally Thursday night. We met with the Pulmonary team and discussed Alex at length. They agreed that he was stable, his oxygen requirements had been about the same with very minor fluctuations. Our goal is obviously to get him off of oxygen completely but did we really need to sit in the hospital, surrounded by potentially very sick people, just to wait until his oxygen levels came up? Everyone agreed no. We could certainly monitor this at home pretty easily or so one would assume.
We had all the equipment delivered (oxygen--a HUGE torpedo looking thing is our new focal point in the living room, I'm thinking we should wall paper it or something but Mark is not in favor, we have little "baby" tanks to go out with, lots of cords, oximeter, stickers to keep oximeter on and a new nebulizer machine to give him his steroid breathing treatments twice a day.)
The visiting nurse came out to help us review how everything worked and we soon learned that the oximeter that we received would not work on a very little eight pound baby, the sensor could simply not be twisted or molded into such a way that it could pick up anything on him, although all of us tried for over an hour to try to convince it to. The nurse called the company that delivered it but they said they had nothing else to offer at that time that would work any better. Ofcourse by this time it was after 9pm and where did that leave us? The nurse said we either could stay up all night to watch him, make sure he kept his oxygen in his nose and wasn't having any evidence of breathing problems or we take him back to the hospital through the ED.
Well obviously we chose to stay up with him all night, which was nerve wracking not knowing what his oxygen levels were and making sure he kept the prongs in his nose. I also happened to be talking to a dear friend who just happens to be a paramedic and she was able to get us a small battery powered pediatric oximeter that we could at least do periodic checks throughout the night which was a Godsend, THANK YOU Vickie!!!!!
After about a half dozen calls yesterday, we finally got a monitor that worked better on pediatric patients. Nothing is perfect but at least we can have him hooked up to it all day and it alarms us when his oxygen level drops which is usually because he has yet again managed to take the prongs out despite all the tape that we have plastered on his poor little face.
We already have a love/hate relationship with the new monitor and the sensors are still not the greatest and we continually have to switch back and fort between trying his little foot or even his hand to get a good reading. When we've used this monitor and the portable one, the readings don't always coincide and could be 5 points off even so its terribly frustrating not knowing if we can even trust the monitor but ofcourse its the best shot we have knowing how he is doing.
The pulmonary team was fairly confident that he would only require extra oxygen for another week or two at most and depending on his levels, we should be able to start tapering it soon (hopefully). But ofcourse we are looking at this monitor and wonder how accurate it is and how confident will we be about trying to taper the oxygen based on the numbers its giving us.
The doctors are still looking at other possible factors as well. They did a cardiac echo before he left to check his heart function and are trying to rule out anything else that could be contributing. We are awaiting results. They say if he is not able to come off oxygen in a week or so then they will look harder at what might be going on. What is more frustrating to me is that he's really back to not eating well, alternating fighting us or just letting the milk run out of his mouth. We've called GI again and are still trying different things for reflux in hopes that we can turn this train around but to be honest, if we thought we were tired and drained before, well I'm just not sure how to even describe this.
We know this is a temporary state and that we will get through this that much stronger at the end. We are incredibly grateful that we are not facing any of the other circumstances like pneumonia or RSV or anything worse. As always we are buoyed by the love and support of our wonderful friends and family that continue to see us through.