Tuesday, September 23, 2008

Waiting, not so patiently (Edited)

Mr. R was released on August 1st from the NICU on 1/8 of a liter of Oxygen and an Apnea monitor in addition to some medicine called Lycine to be given every other feed. * I was given instructions to follow up with a pulinology appointment. It took me months to even get an appointment. They would not return my calls. I had the peds office call to confirm they had everything they needed...yes, they would get with me to set an appointment the peds office was told. I had the hospital social worker call...no avail...still not appointment. Finally, I got a call to get an appointment set the day Ms. N was getting released (a Friday, 9/5...see 5 weeks later). Then, N got readmitted on Monday and between phone tag that week she was back in the hospital, I FINALLY got an appointment set for October 16th. Quite rediculous, but what are you going to do. As I told the ped at our appointment last week, I'm done and been done with the apnea monitor. Done. It almost never goes off and when it does it is for loose leads or some such. And, R is off oxygen for good periods of the day for various reasons like it is a pain to move the machine if you want to sit with him in the rocker to feed him, or I'm taking him out, or we are going for a walk or whatever. Then, he is quite skilled at pulling the nose prongs out and you can think he is on it and he's not. Plus, you have to check the settings frequently because Max has been known to go turn the nob when you aren't looking (or it just mysteriously resets itself when he is around) turning it all the way down or worse all the way up (giving R way too much oxygen). I'm just sure R doesn't need this anymore and that he is only on it because we haven't been given doc's orders to discountinue because we don't have a fricken appointment. I've been so tempted...more and more tempted every day to just stop. Just stop the meds and stop the oxygen. I may still yet. I only haven't because I'm either too chicken or too wise, but mostly because I don't understand the implications totally and what if I'm wrong. Oct. 16th is still

* The med doesn't exactly always occur every other feed these days either because I may decide to BF during a med meal or may forget or be too tired/lazy during the middle of the night and I figure it can't be all that precise because at this age a meal can be anywhere from 2 - 5 hours so there is a big range.

ETA: This post ended abruptly when at 1:30 am, both R and Max started screaming for their momma and Ms. N just cried on and off and made noise. Sometime after 3 am things settled down around here. I'm supposed to be out the door with all three kids ready to make an eye doc appointment for the twins and none of us are fed or ready and I'm just now pumping. Sigh. Ah, deep breaths, what will be will be. Noemi will have to get Max ready and to school after I leave with the twins which will be a battle in and of itself. Anyway, the post stands as is half done with no editing as there will be no time to read, fix, and finish it for some time.

1 comment:

Anonymous said...

Life with newborn twins and a toddler is hard! Thank goodness for preschool! It was such a relief when my son went to preschool and I just had to deal with the babies! Sometimes, if they were napping, I'd call the daycare/preschool and ask if he could stay later and I'd get even more of a break. nancy in ak