How’s it going…

It’s going…that’s my typically response to this question.  Not really sure how to respond, if I’m in the mood I might elaborate if not I just smile and move on.  I would be lying if I told you things are back to normal in the Marlett household, we now have a new normal that is not quite normal.

We are trying to get used to Lucy’s new hardware.  In some ways it is way easier than the NG and in others it is way more challenging!   I love that we no longer have to check for placement every time we go to use it. I love that we no longer have to pin her down and put a tube up her nose several times a week.  I love that she no longer needs to have a yellow tube taped across her face with adhesive that eats away at her skin.   As for the PEG I love that it is ready to go when you need it, but it leaks so much!  Her ports on the end of her tube were stretched from being used so often that her feeding sets kept coming unplugged and leaking everywhere!  She can also unplug her feeding set from her tube all by herself, augggggh!  I was looking forward to receiving our monthly shipment from our health care company on Tuesday only to learn  that they mailed us the wrong Y-ports for her tube.  After many phone calls I was able to get things straighten out with our order, but we still had to wait for our new order to arrive.  Needless to say, Lucy lost a lot of her feeds this week on account of a loose connection, how very frustrating and disgusting!  I now have measures in place to ensure that we will always have a supply of whatever we need when we need it! I’ve said before the learning curve is steep!  We are working daily at trying to get Lucy on some sort of a feeding schedule, some days she does alright and other days are down right awful.  Some days she tolerates the rate at which she is fed and then you have those days where she doesn’t.  What’s a mama to do?  We are trying to take this one day at a time, but I am frustrated and I know she is too.