Be Joyful in hope, Patient in affliction, faithful in prayer. Romans 12:12

Living in Jophies Jungle Headline Animator

Wednesday, September 2, 2009

Brave Pants........

Well I finally snatched those brave pants out of the closet. Grabbed a pair for Jophie too :0)

And so it begins...
Another steroid reduction....

Now lets just pray that Roid Rage stays away!

Lacey: You asked, "Do they keep this man on steriods for his lungs?"

Yes to the lungs but also for his adrenal glands.

Jophie has always been given steroids(Usually IV Solumedrol)during illnesses so he was no stranger to them. The first time he went on what I would call "massive" amounts was when he was 7. That hospital stay was around 6 months. All food was stopped at that time and he had surgery to place his Mic-key and the fundoplication.

Infectious disease placed him on massive amounts of steroids to heal his very damaged/sick lungs. He had literally been breathing food/liquid for years but it had has went undetected as he continued to pass all his feeding studies. During that stay infectious disease diagnosed him with Staph E. and Enterobactor not only in his blood stream but IN HIS LUNGS. It was determined the ONLY way for him to have these in his lungs would be if he were refluxing and then aspirating directly into his lungs. He would be diagnosed with silent aspiration/silent reflux after using a more advanced feeding study as opposed to the technique used when he was younger.

The steroids would remain on board as we desperately tried to hasten the healing of his very ill lungs..

Slowly we were able to wean him from those steroids and only during illnesses was he placed back on them withus always able to slowly wean him back to "his normal" until 5 years ago.

Again he was hospitalized for a very long time and once again massive doses of steroids were tossed on board to save his life. That ordeal began in July just over five years ago and I was told he would not come home with us. Once again Jophie proved them wrong! ;0)

Today we are finally nearing his "old baseline". The weaning schedule is a slow process but necessary to prevent dangerous and often deadly complications.

We continue on a path of constant "Increase/Reduction" regimen. We increase(stress dose) during times of stress/illness/surgeries or anything that would cause extra stress on his body. We have to do this because the steroid use to save his lungs and his life has also caused his adrenal glands to fail. Vicious cycle eh?

The adrenals are really imporant(as I've learned from this experience) releasing the hormone needed during "fight or flight" times.

EX: You see a snake at your feet. You FREAK! I know I would ;) Your heart races/your breathing increases/you sweat(This is flight/flight) Your body will then begin trying to "calm" itself unless of course that snake is now crawling on your foot! LOL

But, for example sake lets just say it crawls away at which time your breathing begins to slow/heart rate slows and all systems begin going back to normal. Because of the adrenal damage Jophies body will no longer do this normally so the steroids do it for him. Without them he would die.

As far as the lungs are concerned...

The steroids are still necessary creating a wicked double edged sword indeed!

I finally managed to get "The List" up at the bottom of Jophies flier as well as button linking to it on the sidebar. Much more about that in my next post but for now feel free to look.

Jophies Closet is also up and running but I still haven't had time to toss anything in there. It's photographed and ready I just need some time! There are some really nice items from Jophies closet and even the twins are putting their share in to help Jophie :0) This too has a new button linking from the side bar but you won't see much more than an empty page with a piddly little "test" post! LOL

We're really enjoying this sunshine! The temps have been perfect with gorgeous blue skies! Jophie made it out 2 days so far this week. By Wednesday we all needed a bit of rest so we just let him have a lazy day sleeping so he could catch up. The fresh air and sunshine sure does make him tired! A good tired though.

We did manage a decent fall shoot. I have tons including some more BUG pics! Yes I'm turning into this "Freaky about bugs" photographer. LOL

This momma is pooooooped so for now I'm leaving you with only a couple of my smiley little guy....


Trina and Jophie


victoria said...

Trina, Just wanted to say that I love your blog and photos, and that you are Jophie are truly an inspiration. Thank you for blogging.

Shari said...

Steroids are such a necessary evil! I pray the reduction goes well. Jophie is a miracle and I enjoy reading his blog! :-)

ANewKindOfPerfect said...

I hope that the reduction goes as smooth as possible. I love the striped shirt, it makes for a great photo!

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