Adjustments

We had some friends visit today, and ventured to take Toby from his room to the living room. He liked the swing - fell asleep in it!! We're still adjusting to having him home; things like how often to suction, the temperature of his heater so he doesn't get a lot of condensation in the vent tubing, etc. He has a small fever today, and has been wheezing a bit; We gave hime albuterol to help with this. Please pray that he doesn't have an infection. I don't want to go back to the hospital so quickly. Our night nurse is coming tonight for the first time. We're praying that we work well together with her. She would do 3 nights, and then another nurse we haven't met yet would do 2-3 nights.

Oxygen Levels

They tried to take Toby off of the oxygen today, and his oxygen levels dropped down, so he's back on. We're asking the questions about what needs to be done for him to come home. First of all, they want to find out why his sodium and potassium levels have been fluctuating or at least see the levels stay within a normal range. The last few days his potassium was lower than normal, but not enough to alarm doctors, and today it was back in the low end of the normal range. He's on an apnea monitor right now, and they're recording what he does and how he pauses in his breathing. From this they will decide how severe it is, and may even do a sleep study on him. After that they want to get him off of the oxygen and see if his feeding issues resolve. Not all of these things have to completely be "normal" for Toby to go home. He could go home on an apnea monitor, oxygen, and/or a feeding tube, so we wait and see what happens. We're praying all these things become normal, but if not we will be trained on how to take care of him. So we wait and pray.