Skin infections, Cranky Joey, and Getting Ready for Home!

"What we cannot do, God has done. He justifies us by his grace." Grace is entirely God's God loving. God stopping. God offering. God caring and God carrying.

Joey is coming home soon and I am feeling extremely overwhelmed, because that is what I do. I am a worrier by nature. What will we do when Joey gets sick? How quickly can we get him back to the hospital when he gets sick? Will we be able to bump up his oxygen when he needs it quickly. Will I be sleeping with one eye open to make sure his nasal cannula is still in his nose overnight? Will I be able to wake up fast enough to stick his nasal cannula back in his nose when his oxygen alarms go off in the middle night? How will I keep the germs out of my home?  How will we work efficiently once he is home, because we need medically trained caregivers and we don't think our insurance will approve of any of nursing care. I don't think our income qualifies for any financial assistance either. Sometimes being middle class can sometimes put you in a conundrum.  How hard will it be to load up an oxygen tank, a feeding pump, and maintain Joey's oxygen saturation while I'm driving.  What if his nasal cannula falls out while I'm driving. Should I have someone else always ride with me if I have to transport Joey somewhere? Will we go anywhere together as a family again, or will one of us always have to stay behind to stay with Joey, because let's be real, cold and flu season is here and all of these viruses are lurking behind every corner and should he get sick, it could be deadly. What future medical issues will I face with Joey, because Trisomy 18 kids do experience many medical and developmental challenges as they grow.  And oh my goodness, all the stuff that we still have to buy, because we were not expecting to bring a child home from the hospital. It's crazy to actually type this all out, and see how far God has brought Joey-to go from we may give birth to a baby that won't be alive to 5 months later and we are bringing him home.

Having a medically complex child is scary, and it can be heart stopping-literally and figuratively.
Saturday evening when Joey was in pain from having his skin irritation, I watched his oxygen saturation dip to dangerous levels, because he just didn't have the reserve to take in good breaths.  We had to give  him more oxygen support, but what scared me was how fast downhill he went.  We were lucky to be in a hospital setting so that they could respond accordingly and quickly. I'm not sure if we were at home, how quickly we would have been to respond to his needs.  Even then, he had been and still is extremely fussy.  We think it's due to skin irritation and infection from his gtube site. The only time Joey is happy these past few days has been while asleep.  When he's awake, he's very angry, and it is worrisome and hard to watch.  It's surprising because this kid has been through open heart surgery, and I think he's angrier with this skin irritation than recuperating from open heart surgery! With heart surgery he had some hard narcotics to help him through his surgery, whereas right now, he just has good old tylenol, which honestly, isn't that effective.

All that being said, my good old friend Max Lucado reminded me of this:
"What we cannot do, God has done. He justifies us by his grace." Grace is entirely God's God loving. God stopping. God offering. God caring and God carrying.

Thank goodness for God's grace.  It's not all on me, although it sure does feel that way at times. Scarlett, one of Joey's primary nurses, reminded me that we have so much community and support surrounding us.  God has been good to us and continues to be good to us.

Please pray that the doctors can get to the source of Joey's infection, the antibiotics kick in soon, and Joey can have some relief from whatever is making him cranky. Please pray that I can surrender my fears to God.
 We have a crib!

I sleep with my mouth open too!

Joey is so mad!

Joey is still annoyed!

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