Sunday, July 18, 2010

A Lot to Swallow

This Thursday, July 22, Trip will have a barium swallow test done at ACH. Lately, he's been coughing and clearing his throat some when drinking liquids, which can be an early sign of dysphagia (swallowing problems). He's been drinking less and sometimes just refuses to drink anything. Dysphagia is a somewhat common problem in JDM patients when the muscles involved with swallowing start to weaken. Given that we already know that he has weakness in his neck, it makes sense that there might be weakness in the muscles inside the neck and throat. It's also necessary that he do a barium test so that we can know if there are any problems that could affect anesthesia next week. He has recently had a little bit of a head cold so there is a possibility (and we do hope) that this is all related to drainage and actually not dysphagia. But, again, the good news is, if he is suffering from dysphagia it should quickly be resolved once he begins steroid treatment.

And speaking of beginning treatment, here's the current plan (I'm 95% sure that this is how it will go. I should get a call tomorrow from Pachman's office confirming this): We're planning to drive to Chicago this Saturday, 7/24, so we can have Sunday to have some family time and enjoy the city- visit the Shedd Aquarium, Lincoln Park Zoo, etc. And, yes, Ruby is going with us. Monday may be a long day for her but the daily infusions aren't going to take as long as we originally thought. On Monday, Trip will be put completely under with full anesthesia (not just conscious sedation like the last MRI) and have an MRI which will immediately be read. Then they can do the muscle biopsy and port placement while he's anesthetized.

After surgery on Monday he will likely go on and get his first SoluMedrol (an intravenous corticosteroid) infusion. There is a downside to getting his first infusion right away. I'm not sure why this is, but the way the port works, if you don't immediately access it within the first 24 hrs. after surgery (which Pachman doesn't recommend doing) you have to wait a week to access it. So, even though he'll then have a port, he'll have to get those first 3 infusions the old school way. I'm hoping that they can use the IV placement from the surgery and maybe even just tape it down when we leave the hospital each day, so he doesn't have to get repoked each day. If not, he can just get the EMLA (numbing) patch pre-poke even though poor little man is going to be awfully tired of needles coming at him. He'll get the 2nd dose on Tuesday, 3rd dose on Wednesday, and we'll drive home afterwards on Wednesday or Thursday.

The infusions should take about an hour, so that's why we're going to go on and take Ruby. I've heard of some JDM patients taking IVmeds that took 6 plus hours so I feared that that was what he was getting at first. That would've been way too long of a day for Ruby day after day. We pray that the side effects from the meds will be minimal and Trip will feel up to doing a few fun things in Chicago on Tuesday and Wednesday. We'll just have to play that by ear. The most common quick side effects of the SoluMedrol are a severe metallic taste, headaches, and anxiety and mood swings. I've heard some people call it "PMS in a bag!" Yikes!

I think the current health prayers for Trip are pretty self-explanantory: that he will have a successful surgery on Monday with little discomfort to him, and that the infusions will be affective with little to no side effects.....and safe travels for us as we make the 20+ hour round trip car drive yet again! And thank you God that the air conditioner on our van went out last week, so that we could get it fixed, and not next week during the Chicago trip. That would've been horrible!!


Melanie said...

We love you guys SO much and are praying for strength, comfort and healing!!! Stay strong!!! Prayers in Florida are being lifted up for all of you!!!!!!!!!!!!

Love, Mel & Nick

Kate and Jon said...

I am praying for you guys. Call us if you need to stop in Southern Illinois for an icecream or McDonalds stop! We could meet you somewhere.
Anyway, love you.

Max's Family said...

I have not read blogs in forever and just got caught up on yours. I am sitting here in tears. I just wanted to let you know that we will be praying for Trip and for you, Rex, and Ruby, too.
Love ya,