Tuesday, August 18, 2009

Home Health Agencies and update

Ok, if you are not interested in reading the psychotic rampage of this mother, you may want to skip to the next paragraph. We have been having troubles with our supplier of Lillian's medical supplies. I ordered apnea monitor patches for her two weeks ago and still have not received them, and being told every day that they would be here the next day. Long story short...they want me to strap her into the emergency straps of the monitor....I'm sorry, you'd just have to see that to understand it.....not going to happen...at any rate, once again...people who have no clue what it is like to care for a special needs child. It is very incomprehensible for me to grasp the mentality of these people. People who are pushing papers and have no clue what your child's life is like. Treating your child as if they are not a person, but a mere inanimate object. Of course, it's not Praxairs fault (the supplier) and it's not Clarian's fault (the micromanager) according to both companies. GRRRRRRRRRRRR

Lillian was running a bit of a fever this morning but seems to be doing well for the rest of the day. I took her to the doctor yesterday bc she ran a fever all day and acted miserable, but nothing showing up on exam. She is currently still napping. Her feedings have still not been going too well, and pardon the frankness, but her poops are looking like cockelburrs as Matt likes to say. My sister pointed out today that perhaps she may be teething....that had not even crossed my mind, but perhaps the culprit of the recurrent fever. Hmmm, maybe baby. I'm supposed to be giving her enemas every night to make sure everything is nice and soft and keeps moving.

She was so cute today laying in my bed on my pillow teasing me that she was in my spot. Too funny. She also dragged her Dad's guitar into the living room and played that for awhile. I'm sure he would not approve, but what he doesn't know won't hurt him, right? LOL.


  1. Ugh. I could start a whole new blog and just gripe about DMEs. And many many MANY people would read it and agree. It is ridiculous appalling, the way they treat patients with severe medical conditions. I have a fellow trach mommy whose suction machine broke in the middle of the night. So she called CrApria for a replacement and when the on-call driver got to her house, he actually yelled at her for calling him out in the middle of the night for a non-emergency. A non-emergency??? Obviously this jerk had never choked on his own snot that he couldn't cough up or gotten a plug in his airway. If he had, he would have realized this IS an emergency situation! I will never understand why someone would get a job in the health care industry if they are so self centered they can't show a tiny bit of compassion for another who is suffering. As for supplies not showing up on time ~ it's not like we are ordering a sweater from JC Penney that we can wait on!!! Our kids NEED these things!!

    *Stepping off soap-box*

    Whew, I guess I SHOULD start that other blog to complain about DMEs. Can we all say "pent up aggression and anger"???? ;)

    Cockelburr poop? Ugh. That can't feel good at all, poor sweetie. At least she can still hang on to her sense of humor and tease you. What a cutie pie!!

    Praying for you friend.

  2. okay that sucks and a fever too poor girl gets those all to often doesn't she. Vent away my friend.

  3. I know what you mean about the never ending battle with med suppliers. We have been trying to get more inline suction catheters all week. If they don't arrive tomorrow, this girl will have to put on the mean face. Grrrrr! No really, they don't live it everyday, so they have no clue what it's like. Vent...vent...

    I hope your sweet baby feels better soon. I don't know what cockelburr poops are, but it doesn't sound good!

  4. oh, I wish every person in the world a special needs child. Then we would have peace and understanding! Sorry you have to deal with unnecissary cr--.
    And for this Yankee, could you clarify what the heck is a cockelburr????

  5. I am amazed to see that the support problems we faced 30 years ago with our trached son continue today. You would think that in THIRTY (!!) years attitudes would have changed. Then they did not expect children to survive and in my experience 90% or more did not make it; I do think that has changed today.

    Talking about the apnea monitor brings back a funny memory although it was anything but funny at the time. We did not have pads then; we had bands that went around the chest. My little stinker would pull the band off, and we would come running in panic only to find him kicking his feet in delighted anticipation of our arrival. We learned that an undone strap was a solid sound, and the apnea signal was an intermitten sound. So, we responded with much less alacrity to his band release. He learned that, too, and soon he was pulling the band away from his chest, letting it draw tight again, then pulling it away again, simulating the apnea signal. The little stinker was only 18 months old, and he was clearly in charge!

    Today he is 30, and he still tries to be in charge!