Rooming In Updates

It's our last night of "rooming in." It has been a difficult venture for us. So far, no major mishaps. Although Paul and I are still in desperate need of 24 hour care nursing (that insurance won't provide), we're confident that we can do this. We have to, Caleb's our baby.

The most difficult has been staying up late to give him his medications and to perform regular suctions in his trach. Also, since his cries are muted, we can't hear his cries at night. We literally have to be awake to know he is crying and needs attention- what ever it may be. To remedy this, I have requested to be sent on an an oxymeter/pulse sock saturation monitor. With the machine, it will loudly alert us if he is desating.

The four nights of actual care for Caleb just makes us realize that he is a special baby and we need assistance from a medical staff at all times. At least, until we get acclimated with our new situation.

There's so much to learn still and so much to get accustomed to. Few more things we need to do/figure out:

• How to organize his necessary medical equipments in one convenient, large bag/suitcase- whis is to include his CPR bag, meds, trach care, G-tube supplies, suction, etc.
• How to schedule our lives around his needs (who sleeps at what time and who wakes up at what time)
• Contact the local Fire Station/EMT in case of emergency- we need to do this in event of emergencey- that way they already know where to go, what the problem is, and Caleb's medical history
• Contact the electric company that our home cannot go without electricity- because he is dependent on machines that require power
• Contact a compounding pharmacy and schedule medication pick up (closest one is 30 miles away from home)
• Contact a home health care agency
• Contact various agencies for therapy

To top it off, we have to work out a plan B in event my insurance company do not approve 24 hour private duty nursing. That plan is to get medicaid for my medically dependent baby.