Lessons learned

We've been home now for two and a half weeks, and we've had a bit of an interesting time adjusting to our new life. Here are some of the lessons we've learned over the last few weeks!

1. It takes a lot of medical supplies to get Timmy through one month. Boxes and boxes. We were home for nearly two weeks before we had a day without a delivery from UPS.

2. Whoever decided on supply limits has never tried to raise a baby with a trach and g-tube. Only 150 suction catheter kits per month? Ridiculous! And if our pulse ox sensor has already lost its stickiness by the second day (and completely broken by the third) how are we supposed to survive on two per month?

3. A follow-up to #2. Just because your supply company tells you that your insurance company denied more supplies (suction catheters, pulse ox sensors, trach ties, etc.) doesn't mean they actually did. The result of this discovery? We've discovered that our supply company has lied to us on numerous occasions and our insurance company has given us their blessing to order as many supplies as we need!! Who would have thought that the insurance company would be the good guys?

4. Growing up, one jug of vinegar would last my family years. Now we go through one a week (along with several gallons of distilled water). I never knew before how useful vinegar water could be in disinfecting syringes, suction tubing, and all sorts of other things. I can never shake the feeling, though, that I should be dying Easter eggs with the vinegar.

5. It's a bad idea to run the air compressor, dishwasher, and dryer all at the same time.

6. Organization is the key to everything. Investing a small fortune (not really) in lots of clear plastic drawers and a dry erase board was the smartest thing we've ever done.

7. It never fails that Timmy's pulse ox will give false alarms a million times a night (when we're theoretically sleeping), but works like a charm when Timmy naps during the day (and I'm already awake).


7. If you take a child with a trach and g-tube anywhere (even just to the doctor's office) expect to get stared at. A lot. So just get used to it. (On a side note I thought everyone was staring at Timmy because he looked so cute in his little bear hat, but Mark pointed out it was all the tubing. Sigh.)

9. Just because the hospital sends you home with a trach spacer and a thing of Flovent doesn't necessarily mean they're compatible. Figure this out before you leave the hospital.

10. When you call the NICU in the middle of the night to figure out what to do with said Flovent and they tell you to whack the cap off with a screwdriver, whack very carefully. Otherwise you end up with a broken canister of Flovent that is still incompatible with the trach spacer. And the 24-hour pharmacy won't be able to help you.

11. Somehow, regardless of how easy it is to pour milk into a feeding bag during the day without spilling, it's impossible in the middle of the night. Put down a towel to protect the carpet.

12. The sun really does get stains out of cloth diapers! I had heard rumors of this miraculous phenomenon, but I was dubious. It works amazingly! Now I'm trying to see if a combination of the sun and lemon juice will get the tomato stains out of tupperware.

13. Timmy loves people, especially people he doesn't know. He gets a bit lonely home with me all day during the week. His happiest days have been the ones when we've been out and about doing something.

14. We're wracking our brains, trying to figure out how we got peed and pooped on so infrequently at the hospital, but how it happens so often at home. We haven't found a solution to that one yet. :)

15. The absolute hardest thing about having a kid with a trach and a g-tube is not the medical care, though that can definitely be overwhelming at times. It's the paperwork. And the neverending phone calls. On a regular basis we make calls, write letters, and send faxes to our supply company, our insurance company, our nursing agency (though we still don't have nursing), Medicaid, Help Me Grow (early intervention), Social Security, the Bureau for Children with Medical Handicaps, the speech therapy department at Nationwide Children's, our pediatrician, the pharmacy, and our several doctors in Cincinnati that we will be following up with. Crazy!

16. No matter how many other toys we give Timmy, his favorites will always be his trach, G-tube, and the associated tubes and wires.

And our favorite quote so far from our crazy supply company?

"Do you want the sterile trachs or the non-sterile ones?"

Really?