I can see the tornado coming and I can't get out of the way. Now the storm might just sideswipe us and we might only lose a few shingles. On the other hand, it might hit us full on and cause a huge disaster.
I was up by 5 this morning. The sad part about that is it was better than being asleep because I was having nightmares. I am fighting off a cold, so I am tired and sniffly and scared and tired. Did I mention I am tired?
Today was a phone relay day. Many phone calls flying back and forth. Gastro doc's office, Neurosurgeons office, and now I am supposed to call Infectious Disease. The g-tube surgery is a go, either when they place the PICC line or when they replace the generator in his VNS on Dec 4th. The nurse I spoke with sounded like they would probably do it with the PICC line placement. The ONLY problem with that is Neurosurgery can not get a date out of Infectious disease for the PICC line. Who knows. I am not worried about the surgeries themselves, Little Man has always tolerated them quite well, so that isn't the problem.
What comes afterward is what is giving me the nightmares. Last night, I dreamed I had to take my boy to the hospital because I thought he might have an infection, (go figure) and first, the windows I had to talk into were too tall for me, so I was standing on my tiptoes and everytime anyone called our names, when I got to the window the person would be gone. Then, we finally got to see the doctor and he informed me that even though Little Man's temp was 149 centigrade, (hey it was a dream and it made sense there!) he thought he was fine and sent us home.
Little Man's bouts of cellulitis have been life threatening, rapidly progressive, and darn right scary. Did you know that cellulitis is a common problem with g-tubes? Well if you didn't, now you do and now you know why I was having nightmares last night.
Tuesday, November 20, 2007
Get Into the Cellar
Posted by
Jo
at
2:51 PM
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8 Kids Who Want To Play:
I'm really sorry you are having to go through all of this. I wish that I had something more helpful to say, though.
Oh honey, I wish I were there. I would give you a boost at all the windows!
You can reach over and hold my hand any time you want.
Dreams have so much to say about how we feel don't they.
I'm sorry for you nightmares.
I'm sorry you are having nightmares Jo, no wonder this stuff is so scary!
NOT THAT IT DOESN'T SUCK, but most cellulitis w/g-tubes occurs during the initial healing phase (during which you'll have the PICC and IV drugs to cover him). Once it's healed up (takes one to three months), it's like the little canal where you put an earring. Not quite as safe as the skin on your elbow, but not an open wound, either. After the initial healing, maintenance is the name of the game--keep that sucker clean and dry, use those gauze squares with the slits, and see if you can get a doc to prescribe some kind of antibiotic powder to minimize moisture. Clean it with Hibiclens. Oh, and a thought I had just the other day, when you weren't picking up your phone (AHEM)? Talk to them ahead of time about putting a button in immediately instead of a "pull-PEG," because when the pull the "pull-PEG," the "mushroom cap" part that keeps it in rips through the newly-formed stoma, causing bleeding and much screamage (why they do it that way is beyond me). If they want there to be a longer "stem" part, have them go up in size, like a 15-french 4.0 instead of a 14-french 2.5 (what I'm guessing they'll end up using, although possibly Little Man'll take as large as a 3.0). That'd result in a "wider" stoma and still leave enough "room" for plenty of turning and cleaning. Do NOT let them do that lame-arsed thing where they use a regular Foley cath and a couple of sutures to hold in the initial temporary tube--if Medicaid won't cover the button (which in my experience they will) then buy one off of E-bay; it'd be well worth it. Wish our kids were closer in size or I'd offer to send you one. Hugs.
{{hugs}}
I often have that sort of dream too. A very common dream I have is that I am in some situation where I need help, but I cannot talk because my mouth is filled up with gum or cotton, and I keep trying to spit it out but there's more and more and more! Supposedly thats your subconscious's way of helping you deal with the problems you're having while you're awake... but I just don't see how that is very helpful! It just makes me MORE stressed!
I haven't a shred of helpful advice for you, but know that I am thinking of you and hoping fervently that Little Man comes through everything with shining colors.
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