Friday, January 18, 2008

Excruciatingly frustrating

3rd day at Children's which tied in with Jason's appointment Downtown, to see Endocrinology.

Discovered because we've changed insurance companies, our medical supplier will not take the new insurance and thus we could end up in a position of having no medical supplies. This has been a huge battle today.

Also, the replaced Mickey tube is also damaged leaving us in a position of using the Corflo and the old insurance company will no longer replace the damaged one because of the change in insurance companies and then of course the new insurance company will take a while to kick in.

Endocrinology, for growth and development, are running late. We've missed the 6 month opportunity to run hormone tests and I'm vexed about that but they run them all the same. The next testosterone spurt wouldn't be until puberty. We've waited a long time for this appointment and it seems only to make other appointments for Urology and an ultrasound to find the missing bits.

Questions: is it ok to do the hormonal tests at 8 months? Lucas had his urology surgery recently and I'm wondering why they want to wait til he's 12 months to do Reu's?

Go to our Occupational Therapy appointment late for feeding and once again, because the insurance has changed, it means a whole new application. It doesn't go ahead but we can at least catch up with Shelly our PICU physical therapist to show her Reu's standing which she's delighted about.

The Mickey tube was damaged and uncannily the replacement was damaged too, and we're left with a temporary Corflo tube that hangs out and keeps going further into his stomach stoma from the 2cm it should be to up to 8cm. And then we see blood in the Corflo. And he keeps throwing up every tiny feed I put into him because of course the Corflo is taking up all the space inside. And yet again no nurse. Within a couple of hours of being back from Children's, we attempt to fix the Corflo and it won't come out, the balloon that keeps it inside doesn't seem to want to deflate. Get Children's on the phone and the advice is to come back in, what would be 2nd time today. Both very tired. I want to try everything to avoid that. Reu has eaten virtually nothing today. It's frightening when the means to feed him when he can't be fed orally, is continually breaking down on us. So I fill him up with Pedialite and then miraculously the Corflo balloon, now deflated, pops out with the pressure of the Pedialite. This is difficult for anyone to understand if they're not in the community of Gtubes I know. But the gist is, an excruciating day.


Michael Clark said...

Changing medical insurance in the US is one of the most depressing, frustrating and stressful events in life. I understand your frustration. Keep a stuff upper lip, give Reuben a big hug.

ypersico said...

Oh I would commiserate, but i'd only be "preaching to the choir"...... let us indulge in a large glass of wine and pretend none of it matters - because it really doesn't - yet it can drive the day, the week and the month....deep breath and re-connect to that which really matters - and know how well you are doing by that which is truly real and significant, and how well you are doing with all the ridiculous stuff the world is throwing at you.... <3, y

ellen charge said...

wow this is bad hope it all gets better for u all

Candi said...

I am sorry it has been such a long week for you guys. I hope the change in insurance ends up being better in the long run. If your medical supplier doesn't take your new insurance, is getting another supplier an option? With the new year it's now time for all the deductibles and co-pays to start again. I was stocking up on supplies for a while until Rob made the good point that we will end up meeting the max again this year, so it really doesn't matter what we end up spending it on. If there is anything you need that we might have, please let me know.

Luke is scheduled to have his first urology surgery next Thursday and he turned 11 months yesterday. His doctor wanted to wait until about a year too, but I am not sure why - maybe to give them a chance to descend on their own? Luke will have a series of 2 or 3 surgeries each 6 months apart. I would ask endo about giving Reu the series of 3 testosterone shots anyway (if it is something he needs). I would think it should help even if he is past 6 months.

Try and take care of yourselves! If you ever need to talk - write or give me a call.

Eva Nichole said...

I am so sorry I wish I could be there to help you in some way. Its so hard, have you thought about respite care just to give you a nap once in awhile.
Such a hard week and I can feel your pain and stress. Hang in there and I hope you get some rest soon.
Crystal and Eva

Jacob's mum said...

Not sure I have any advice but just wanted to send hugs (( )).
We have weeks like this sometimes and it's just exhausting.

Jacob has a dangly peg tube rather than a mickey so we don't have those balloon incidents to contend with yet. We are thinking of getting a button soon though as the peg is starting to get in the way. Maybe ask the Charge listserv if it keeps happening as I am sure some of the parents will have some theories on what could be causing the issues.....
As for the insurance stuff, sounds like a nightmare....makes the the good old NHS sound quite a good deal....hope you can get it all sorted out soon.
Hopefully next week will be less frustrating. Lots of love to little Reuben.xx