Thursday, January 17, 2008

Be It Ever So Humble

There really isn't any place like home. We have new routines and things that need to be done and scheduled and placed into our day to day lives.
Little Man has his PICC line until Sat or Sun, with Vanco every six hours. Doesn't sound too bad, until I tell you that like the 4 am dose? Someone hopefully Bald Man or Princess has to get up 3 to take it out of the fridge. It runs from 4 to 5 am, I flush it and then I can go to bed oh, about 5:15-5:20 ish. Until the next dose at 10 which needs to be gotten out of the fridge by 9. Add in his PEG tube, feeding pump and five times a day feedings, each feed taking 30 -45 minutes, well,you can see, we have a whole new world right now. The boy will stay home for the rest of the week/weekend with me. It is obvious he is tired, (he took a NAP!) and in pain sometimes and overall not his usual self. This particular self is more cranky, mouthy and more foul than usual. I have found myself dealing with it with far more patience than is my wont and I think it is because I KNOW he isn't feeling well, so I am still reprimanding him, restraining him as needed, (because no matter how lousy you feel, kicking the doctors, nurses and other caregivers, along with name calling is still unacceptable!) but doing it with patience and love. Maybe I have entered a new phase of my life with being more patient, that would be good for all of us!*
I am tired, but so grateful and relieved to be home, I just can't tell you! It is going to be an interesting next few weeks, but guess what? You get to join me virtually in this journey, lucky you!

*Edited to add: Nope, things are back to normal here and I guess I am now just too tired to be patient and kind any longer. It was a nice thought though...

2 Kids Who Want To Play:

elizasmom said...

The grace and good humor with which you handle Little Man's various medical adventures is impressive, Jo. I don't think you need to beat yourself up for occasionally losing your patience! I am glad you are all home safe and sound, and I hope you get some sleep in spite of that grueling medicine/feeding schedule.

Chris said...

Hi! thinking of you and Little Man. I will be here on the journey and you know where I am if you want or need to "chat" to ease the strain.
Are all the PEG feeds as "blous" feeds? Does Little Man feed overnight? I don't but just wondered what the regime is and if they could help make it easier for you both? Sure you will have "explord the options" by now!

Speak soon...and don't forget where I am!

Take care