You’d Think I’d Have All This Down By Now……

But instead of getting easier, I swear it is getting more frustrating. Nothing wants to come together.

Because of the stitches between Parker’s two new stomas, we can’t seem to keep an ostomy bag on him longer than just a couple of hours before it begins to leak. From start to finish right now it is taking me 45 minutes to do this care considering I need to care for two stomas now. It is rough on Parker’s skin to change these bags so often. It is rough on both of our nerves. There are a few places where the stitches have pulled out and taken a bit of skin with it.

Then this morning we discovered that Parker’s lower stoma is draining stuff it shouldn’t be. I have a call into his surgeon. We actually have an appointment tomorrow afternoon. But this is one of the ‘warning signs’ to be on the watch for, so I’m not sure if they want to see Parker sooner.

G-Tubes leak. A lot. Parker is one active kid. So when connected to his feeding pump and he hops around, it loosens the connections and we have formula and meds everywhere. Yuck.

Parker had an exceptionally rough night last night. His sats plummeted down to 80. We did all kinds of breathing treatments. We suctioned. We cussed. We did chest compressions. And we prayed. We think he was trying to hack up a mucus plug the size of his foot. He’s doing better this morning.

I, however, am wishing that I could throw back a few tall shots of something for my nerves. Unfortunately I don’t drink. Drat.

Parker could use prayers of healing. Prayers that what is going on with his lower stoma isn’t anything to be too concerned about. Prayers that it won’t be necessary for them to have to go back in and work on anything. Prayers that this little guy can stay out of the hospital.

It wouldn’t be fair though if I didn’t share a few precious blessings we have received in the last few days:

* Without all the tape and stuff all over Parker’s face it has been discovered that he has the exact dimple in his right cheek that Reed does. Simply precious.

* We were visited by some Angels. Real, true living ones. I can’t begin to express their positive impact on our family.

* I have a husband who is so willing to be totally hands on in Parker’s care. Even to the point of staying up all night with him so I can get some sleep. I have heard of so many marriages not making it when child with special needs comes along. Reed has worked right along with me to keep things with Parker going as smoothly as possible.

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