My parents just spent an entire 24 hour day with me at the hospital. They had to prove that they could manage my care before bringing me home on Tuesday.
A day with me includes:
1. Watching the central line dressing on my chest and replacing when necessary.
2. Connecting and disconnecting the IV fluids that will run at night.
3. Feeding me four bottle cocktails a day. (formula plus extras) Oh, I prefer a formula that cannot be purchased in stores...it is ordered through the pharmacy. I like to scream throughout the process to add some extra stress.
4. Every 3-4 hours refilling my formula pump for my feedings at night while I am sleeping. This goes into my feeding tube.
5. Administering medications every three hours around the clock.
6. Administering the enzymes that I need for digestion. They are given with applesauce through my feeding tube in my belly.
7. PD, which is postural drainage. They vibrate my lungs to clear away any mucus I have built up. This is like a rough massage and I like it.
8. Normal baby things, like a bath, weights and measurements, playing with toys, etc.
9. Watching me sleep.
Yes, the day ended with an exhausted mother and father. I threw up on both of them, just for good measure.....trying to break them in right, ya know?
I may not be a celebrity just yet, but I am pretty high maintenance.
....but I am worth it.
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