Monday, June 27, 2011


7:45 am: Wake up and relieve the nurse. That's right. Holler! We got a night time nurse. From 12am - 8am I can sleep!! Well, I can sleep NOW. Let's just say the first nurse was not up to our standards. Actually, she shouldn't have been up to anyone's standards. I don't really consider almost overdosing a baby 4x over as really a very good start. I wonder if she went to work that night thinking, "Hey, lets see if I can get this baby to stop breathing." Thankfully, Ben was awake and downstairs and happened to see it so he was able to stop her. If that wasn't enough for us to ask her not to come back (but it was most definitely enough) she constantly messed with Rambo throughout the night despite our multiple requests to leave him alone. She didn't understand a lot of his issues nor did she believe he fell into the 'grey' in some of his care. To her there was only black or white. Needless to say, even though the nursing company tried to send her back again we made it very clear she should not make a second appearance. So we tried out a few more nurses and finally found one we felt was capable of handling him. Which, honestly, shouldn't be that hard to do. He's sleeping. But apparently, it is. Anyway, I digress. The point is that we have a nurse. So, Rambo is usually awake at this time. I make some coffee and try to lay on the couch anyway because bless the nurse, she has already done Theodores 8am meds. This becomes pointless however because -

8:05 am: The other three kids are now awake and downstairs. They can usually make their own breakfast of some sort. Syrup over cereal - I don't care as long as I don't have to do it. And usually I don't, but some days we have NO food in the house because a grocery trip has been impossible and I have to come up with something semi-breakfastlike. Oatmeal cookies, ramen noodles, whatever. If it's consumable then it counts. On days that I don't have to create something edible, still, I'm awoken by hot breath on my face and a little voice saying "Mommy, can you turn on SpongeBob?"

8:20am: Turn on SpongeBob.

9am: Realize that more sleep is impossible. Administer Rambo's respiratory treatments. This requires a nebulizer, 15 minutes of chest PT and then suctioning. As well as an inhaler. If the nurse hasn't given him a bath and changed his trach ties then this is when I do that. However, bless her again, usually she does.

9:30am: Give med. Rambo usually falls asleep for a nap around this time.

10am: Vent, prime the line, feed Rambo.

11am: Feed done. Disconnect and flush the line. Squash complaints of "starving!" and "bored!" from the other kids.

12pm: Give med.  Find something for the others to eat and actually eat something myself. Rambo wakes up.

1pm: Give med.

1:30pm: Give med.

2pm: Vent, prime, feed.

3pm: Feed done. Disconnect and flush.

4pm: Give meds. Respiratory treatment again. However this is done when he's awake so anywhere between 3 and 5.

5pm: Again, listening to complaints of the other 3 starving. Again, ignoring them.

5:30pm: Give med.

6pm: Vent, prime, feed. Start making dinner for the rest of the family.

7pm: Feed done. Disconnect and flush. Eat dinner.

8pm: Give meds.

9pm: Meds, Respiratory treatments.

9:30pm: Give meds.

10pm: Vent, prime, feed.

11pm: Feed done. Disconnect and flush.

12am: Nurse arrives!!

And, all throughout we're suctioning (which is pretty constant), doing Rambo's occupational and physical therapy exercises. Actually trying to treat him like a baby and be part of the family so we'll move him into the living room. Play with him. Do housework. Laundry. Dishes. Homeschool. Play with the other 3. Doctors appointments. Maybe step out in the sunshine for a minute or two. Take a deep breath. Break up a fight amongst the kids. Find a movie on Netflix for them. Refill, replace equipment.

This is not for pity.(Maybe a little) Just useless information for the community at large. We're thankful for the help our family and friends give. Who would have thought that a trip to the grocery store could be so exciting and liberating?

It's time for me to tend to Rambo but I leave you with this thought: Suppose two sisters live 240 miles apart. One sister has three young children who are planning to visit their aunt for a week. To prevent driving so far, the sisters agree to leave at the same time, drive toward each other, and meet somewhere along the route. The sister with the three children tends to drive carefully and obey the speed limit. Her average rate of speed is 70 mph. The other sister drives too fast, and her average rate of speed is 80 mph. How long will it take the two sisters to meet each other to transfer the children?

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