Thursday, September 29, 2011

Pump problems and a sleepy girl

Last night was a nightmare!! But little Miss Reagan had nothing to do with it...well, not with the big problems! Reagan was still not liking her mommy last night. She fell asleep for a little bit, but woke back up very nauseous. Thankfully, she fell back to sleep after a dose of clonidine. I watched the nurse last night as she made up Reagan's formula, she put it in a bag, and then I hooked Reagan up at about 11:20pm. Ten minutes or so later, it started beeping "No Food". Obviously there was food (we just put a new bag on)...but we know this alarm all too well. It's a false alarm. Nothing is wrong with the pump. Nothing is wrong with anything. It just refuses to work for some reason. I messed with it a few times and then finally just poured all the formula into a new bag (usually that will do the trick). Five minutes later, it went off again "No Food". I changed the bag out again! Immediately it said "No Food" and refused to work. By then it was midnight, so I called the home health company (waited on hold forever...with ridiculously LOUD grating music blaring in my ear) and they put in a call to the driver on call. An hour later we still hadn't heard from anyone, so I called back. They couldn't get in touch with the driver. They said they'd continue trying. An hour later, still nothing, so I called again. Finally this time they put me through to the lady we normally deal with at the company (I guess they called her when they couldn't reach the guy on call). She said that they had been trying to reach this guy for the last few hours and he just wasn't answering. If she couldn't get a hold of him in the next 30min, she would do it herself (and that's what she did). Finally around 5:30am she shows up with another pump. The nurse hooked Reagan up and it seemed to be working. The lady left and 10 minutes later it started alarming again "No Food"!!!! She called them back and they told her to check the sensor on the pump. Well apparently the pump she brought us had a big crack right over the sensor (this isn't her usual job)! So it was now after 6am so she called another delivery guy who then got up and headed over to the office. He picked up another pump (and more bags) and got to our house at about 7:45am. FINALLY it worked. I don't know if it was the new pump or the new bags, but it worked! All of this time Reagan was completely unhooked. No food since 9:30pm or so! And all of this time, with multiple alarms going off, our precious little girl stayed fast asleep! Amazing! She actually slept in til about 10:30am when she woke with smiles. She's been very quiet but super sweet all day (even for her mommy)! She had "school" at noon, which she really seemed to enjoy, and then PT at 2pm. Afterward she had an appt with the PM&R doctor (physical medicine and rehabilitation) that suggested putting her on the daily dose of clonidine to help with her "bad" cycles (which really seems to be helping...knock on wood). It was basically just a quick follow up, she wrote us another prescription, and we were on our way. Reagan fell asleep on in the car on the way to the doctor's office and slept through the appt and then continued to sleep once we got home! She's a sleepy girl!! Hopefully she sleeps tonight because I'm exhausted after the night we had last night!!! Please keep her in your prayers for continued good days! Tomorrow night we drive to Dallas (5hrs away) so we can be there at 9am Saturday morning to go to an event to get Reagan's special needs tricycle (more on that tomorrow)!!! Prayers for a safe drive and happy Reagan are appreciated!!

Out cold!!

Still sleeping...


Zoey's mom, Heather said...

Sweet girl.And your text, about this mess, I didn't see it until today!

I will call in the morning to check and see how your appointment was and hear about the plan for Saturday.

Praying for happy. Lots of happy.

charity said...

ive been following your blog and i want to say your daughter is such a beautiful little girl. it seems like you have problems with her feeding pump so hopefully this one will work for you guys. praying for her to be happy on your 5 hour drive