Sunday, March 29, 2009

March Madness

We are working on sustaining a crawling position. Since his g-tube hurts too much to be on his belly, this will hopefully help him get stronger.

Last week we received an official report from the Indiana State Department of Health. The cover letter said that after a thorough investigation of our previous home care agency, the department confirmed the validity of our complaints and said the agency was in violation of state law. The packet went on to cite several other violations of the agency that were discovered as a result of the investigation. If nothing else, hopefully the agency will be more cautious with client care in the future.

On to the section of the section of the post where I rant about Mikan's g-tube for awhile... We understand that it will be a chronic issue...I just need something to deal with the CHRONIC PAIN! It causes him so much irritation. He even compensates for the pain by pushing off our stomachs with his legs when we lift him up so it doesn't rub against anything. His g-tube doctor said that whoever we saw would recommend something different, so it was up to us to decide what we wanted to try. Apparently you can only order silver nitrate sticks in boxes of 100 and this doc. said that he was unsure insurance would cover an order for that many. Has anyone else heard of getting smaller quantities that insurance does cover? But this doc. thinks we should only use it if the tissue is out of control (the opposite of what the Riley surgeon said). Anyway, I am at a loss of what to do because of the pain it causes him. When he has surgery in April, I am going to try to talk one of the docs in the operating room into giving him another "aggressive" silver nitrate dose. If nothing else, perhaps he'll be pain-free for a few weeks.

This is Mikan playing with his "play ballard." Yes, he has a "play ballard." We had to give him a "play ballard" of a different catheder size because he bit through his last one. Those are too expensive to be changing every day!

Mikan is cheering for Louisville today.


Rachel Marini said...

Unfortunately I don't know anything about getting the silver nitrate through insurance... I'm sorry. Sometimes I have to call around to a couple different supply companies if our usual company doesn't carry what we need... or in the right amount??? I feel like that's not really helpful but I wanna do whatever I can to help you through the terrible g-tube issues, even if it's offering useless advice :). I truly hope the g-tube site clears up and soon. I can't imagine how much pain and discomfort it must cause Mikan. Give Mikan hugs from Gabe and me.

Jamie said...

jenna, do you have an email where i can reach you? i think i may be able to help with the nitrate sticks.


John Gensic said...



Karen said...

Is having the g-tube removed, and placed else where an opotion when Milkan goes in for surgery in April?

Is the site infected, or just bleeding? If its infected I would ask for a culture.

I have read this still is good for treating skin break down

I hope you find some answers soon. I hate that something that is helping him grow and thrive, is cause him pain.

Aunt Deb said...

If Mikan is on Medicaid, the doctor should be able to write a RX for the silver nitrate sticks and all other medical supplies. My foster infants had all of their medical supplies covered thru the state. WIC didn't cover all special formulas but the medical supply company did and with a RX medicaid covered the costs. Good luck.

ANewKindOfPerfect said...

We got silver nitrate sticks in little paper packages, with 10 sticks inside. Covered by our insurance, as a prescription. It's definately possible!

Have you tried Polysporin powder? It really helps keep the area dry and free of any infection. When my Peanut's site looks sore we either use a little Lidex cream or Polysporin. Just sprinkle it around the tube and then put a 2x2 split on. The polysporin powder can be bought without a prescription at the pharmacy, but they usually have to special order it.

I hope that helps!!