Carrie's Story

It's 7:30 pm, Wednesday night when I finally pull out onto 7th Street in Center City, Philadelphia. I just finished working an eleven hour day. Best to put that time in today since I was unable to go to work Monday or Wednesday and knew already I wouldn't be there on Friday. I called home to see what on earth we should do for dinner. It would be 8pm by the time I got home. I can't remember the last time I actually cooked a meal for my husband and I. Poor Glenn. Thank God for his mom - or all we'd eat would be pizza and cereal. It's a wonder I'm not as big as a house. Fortunately, I don't respond to stress by eating. If only I could find time to go to the gym. Ugh. Why even go there.

Anyway . . . the call home. Glenn answered in his usual cheery voice only to break the news that we were nurseless again tonight. Funny how they wait until the last minute to tell you that. I'll never figure it out. If you know that someone is counting on you - why wouldn't you give them some type of warning? I wonder for the millionth time why on earth I stay with this nursing company.

Now the fun part. Who stays up tonight to make sure Jacky boy is safe? Usually, Glenn likes to take the 10pm-4am shift and I try to go to bed at 10pm, get 6 hours and get up at 4am so Glenn can go to bed and get a few zzz's. However, since Glenn has only been to work twice this week as well, we decide that I take the early shift and Glenn gets up at 4am and goes to work when the nurse gets here at 8am. We pray to God that she doesn't call out too. The problem with this plan, and I don't share this with Glenn, is that I am butt tired. So I pull into the grocery store at 8pm and pick up . . . come on, now, all together . . . PIZZA!! Ok - you're catching on! While I'm there I load up on coffee and French vanilla cream. Can't have coffee without it - it's the little things these days that keep me going. I pull into my driveway about 8:15pm just in time for Jack to be going to bed.

But . . . he's awake! So I yank him out of his crib and kiss every inch of his face as he pushes my face away and laughs. Glenn starts to give me the update from Jack's day as we are devouring the pizza. Glenn stayed home with Jack today since we didn't trust the nurse that was taking care of him. Glenn said he tried to do some work and probably did so for about 2 hours total, but only in 5 or 10 minute increments since the nurse asked non-stop questions and Jack wanted nothing to do with her. Glenn got so frustrated that he ordered another phone line and did laundry. BONUS!!!

So Jack's day . . . speech therapy, trach care, visit from the equipment company, call from the pediatrician, occupational therapy, call from the pulmonologist, call from the equipment company, and one trip to the park. Jack had a ridiculous amount of secretions, lungs that wouldn't clear all the way and slightly elevated heart rate and respiratory rate. Sats decent. Crap. Is it a cold? A flu? That strep throat that the guy at work had? Maybe it's because we just started weaning him off of the vent at night. Maybe it's because we turned the air conditioning off. Maybe it's allergies. Hmmm.

9pm - Time for Glenn to turn in and try to wind down so he can get to sleep by 10pm. Maybe we'll see each other this weekend. I think we have a nurse on Saturday. Do we like her? Do we trust her? I can't remember. Glenn goes up. Now it's me and the Jack man. Oops . . . make that just me. Jack is out like a light.

Now the bedtime ritual. I put on his sat monitor, check his end tidal CO2, check his respiratory rate, listen to his heart, his lungs. He's breathing a little fast. This worries me. I'll try his albuterol treatment. I give him his meds - all 8 of them. Hook up his continuous nighttime feeds. Turn on the vent, and hook him up. All without waking him up. Success!

So now at 1am, I sit watching Jack's numbers instead of watching my beautiful baby sleep. He seems restless and I give him Motrin which has a slight affect on the elevated heart rate. I decide that he's getting sick and wonder what kind of a winter are we in for if it's starting this early . . .

Carrie
Philadelphia, Pennsylvania
Mom to Jack - born with a giant omphalocele at 32 weeks. Trached due to secondary pulmonary hypertension.