HOME NURSING UPDATE

Many of you have emailed me asking the latest on the nursing situation...I still don't have any final answers unfortunately. The hours have been cut back some and possibly completely as of next week. They are currently reviewing our situation.

Last night I didn't have a nurse and while I didn't get much sleep, it was fun to sleep in the same room with him and listen to him breathe. (And when he would wake up he would play with this toy that sounds like a bell...so it sounds like he is "ringing" for me to come play too!)

And it's amazing what you can get done at 4 in the morning! But really, I did manage to get some sleep since he is so much more stable right now. Not sure how it would be if he was sick because then his O2 sats are all over the place and he needs suctioning frequently. The one odd thing right now is that he has bradycardic episodes more frequently than before...last night the monitor never stopped beeping.

We'll see. As much as home nursing is soooo incredibly helpful and it will be difficult without it, I do look forward to having our home once again be just "our" home and be on "our" schedule. I know we will find a way to manage...there may just be a rough transition. I (with hopefully some help from the other parent) will have to hire someone with nursing training who can help with Maxwell so I can run errands, sleep occasionally, etc. -- all things you cannot do with a "medically fragile" kiddo. I am confident it will all work out...what is most important right now is how great Maxwell is doing!!! :)