I received a call at 9:30 this morning from Owen's Gtube Surgeon. They wanted Owen to get in for his Gtube study today! After several hours of fasting, I took him to his appointment with the Radiologist.
These procedures get harder and harder the older he gets. He broke my heart while we sat in the waiting room and he kept saying "Eat? Eat? Peeezz??"
We took him back to the room and he was not amused. I stripped him down, laid him flat on the xray table, pulled his arms over his head and the nurse injected dye into his Gtube. She wasn't the smartest one in the bunch as she left the medicine port open on the tubing and got dye all over Owen's clothes. Then she almost pulled his Gtube out when she took the syringe to get more dye and then said "oops, I forgot to disconnect him!" Seriously???
After 10 minutes of xrays and screaming, the Radiologist said that everything looks PERFECT!!
Great news! Why is he still in so much pain??
He spent the rest of the afternoon with puking and diarrhea.
I don't know how much more testing I want to subject him to. Perhaps he just needs more time for the Gtube site to heal!?
Thursday, January 21, 2010
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13 comments:
OH my gosh Andrea...
glad you guys were able to get in...
but, sorry they weren't able to find the problem.
We use the mickey button too...and have had it for almost three years...and we've pulled out the whole thing MANY times..and Isaac has never complained. NOW...he doesn't talk..
diarrhea...
NOW...there was a time when Isaac had constant diarrhea. Turns out, he had something called Dumping Syndrome (it's related to the gastric surgery that they had). It causes horrible tummy cramps and Isaac' blood sugar would shoot up. I think they diagnosed it by having my monitor his levels for a few days.
The treatment was to simply add cornstarch to his feeds.
It just might be worth goggling on your part and if any of it looks familiar, ask your gi.
Hope some of that made sense and helps.
I'm so sorry he's still having trouble! I can't remember how far out Owen is from surgery.... Lily had her g-tube placed the night she was born (and was intubated and sedated for many days afterward), so I don't really remember how long her recovery took. I do, however, remember that when she was finally able to have the site closed, the doctors told me it wasn't a very painful surgery. HA! It's an abdominal surgery. You're dealing with stomach muscles. I actually brought her home on Percocet (she couldn't take Tylenol with codeine or Motrin, and percocet is actually easier on the stomach than most other pain meds). I had to keep her on round-the-clock meds for several days, and even then, we had to slowly wean off and onto regular Tylenol (recovery was probably a couple of weeks for Lily, but it seems to me Owen has been dealing with this longer than that, right?). Will keep praying for you guys!
reading about his procedures breaks my heart.
i'm glad everything looks good but i hope they figure out what's going on and poor owen feels better.
Poor thing. And poor you having to watch him not feel good. Hoping that they find something or that he just feels better with time. Have a great weekend with your darling little babes!
I was kind of hoping they would find something to help ease his pain. You are in my thoughts and prayers that his pain will go away on its own.
I was kind of hoping they would find something to help ease his pain. You are in my thoughts and prayers that his pain will go away on its own.
What a terrible experience. I am so sorry it happened.
Oh Andrea,
I'm soooo sorry. I couldn't sleep last night and I decided to read blogs. Yours was so heavy on my heart, but I didn't want to come across like a stalker by commenting at two in the morning...so I'm doing it now.
Anyway, we went thru so many struggles with "tummy pain" and not knowing what it was. I am holding your mama heart so very close to mine because I know that pain of seeing your child endure it and feeling so utterly helpless. I will be praying over this for Owen. I just encourage you to know that you are NOT crazy, that you know Owen the BEST, and if your Doctor is not listening to you, to move on to the next. I don't know how many we went thru before finding one who REALLY LISTENED (it ended up being the CVICU's NP Jana Norris and Dr. Roth).
Also, as you try to figure this out, it might help to keep a diary of everytime Owen breaks out into this pain, and to write down everything that occurred before. It helped us to finally see that Moriah's pattern wasn't anything surgical or structural (hers turned out to be cvs and abdominal migraines). Not to say that Owen might have THIS at all, but sometimes it just helps writing it all down.
You are such a superstar Mommy.
Sending lots of hugs, love, and prayer my friend,
Victoria
The experience that I have had with one of the tech ladies for a g tube placement check was very similar to yours. I think they need more training or something. They almost pulled Bree's whole g tube out...she was pullin on the wrong part!
That's odd that they can't find the problem. Not to worry you, but could it be something with his heart that is hurting him??
You are an amazing mom, and I know you are worrying so much for him. I would be too. ((HUG))
Poor little guy! I am praying for you guys, and for Owen's healing. I hope he feels comfier soon.
Cxx
Man it sucks that your little buddy isn't feeling well lately...I hope that this isn't a bad sign... Our prayers are with your family...
Ahh, Andrea...I'm sorry you had to go through that. I hope they figure out what's going on ASAP. I think about you a lot & I want you to know that I admire you so much. You are such a good mother/advocate. That's why you were sent such a precious little angel. You take better care of that little guy than anyone else could. Good thoughs being sent your way...and prayers too.
oh my gosh.. people are retarded when it comes to gtubes.. seriously, for a gi study you'd think they'd know what they're doing a little better than that. They already go thru so much that at least everything could go smoothly..
I'm so frusterated for you that they havn't found anything yet! It's always better just to put a name to a problem I think! I was thinking along the same lines as the first comment here.. maybe he isn't have pains from his Gtube, maybe the pains are in his tummy or are intestinal. When he screams, is it usually associated with the vomiting or diarreah? I know it's hard to answer those questions.. I never knew what was following what bc she threw up so much of the time. Maybe his digestive tract is struggling with the formula. THe body's natural defence is to throw it up and get rid of it when it is not something the body likes.. have u ever tried feeding him real food? The imporvements with Bela were HUGE.. I'll shoot you an email about it..
poor little guy.. I really hope he starts feeling better soon..
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