Ok so Quinn's j tube has been giving her massive problems, right? I was really concerned that there might be an abscess because it started swelling up the other day and I could feel some knots under the site. Quinn was trying to run at the park and holding on to her belly. the pain was just so bad. And jsut the fact that this had been there for a month... I tried scheduling a surgical consult but the consult could only be scheduled for March 3rd... unacceptable for a mom taking care of a 5 year old who has alreayd been in pain for a month... Taht was just for the consult too, not to mention scheduling the procedure. So i called up her GI doc and told him that I wanted it taken care of quickly. Let him know about the infections that were found on her site and etc... so he asked us to come into the hospital today so he could have a look at it.
And we did that. he looked at it and was pissed that it wasn't taken care of when we were inpatient... nor was it cultured when we were inpatient a few weeks ago. he said that he specifically told the GI team to clean it up and have it cultured... it was never done (rmemeber it was her peds office that cultured it). He didn't want her going home with this green crap and pain around the site.
So he paged Quinn's surgeon who came and had a look at it. Quinn's surgeon is head of peds surgery in her children's hospital... very busy guy. They said that we could have it taken care of right now! The procedure was extremely minor and it only lasted 15-20 minutes, but just the fact that it was taken care of so fast made me the happiest mommy on Earth today! Especially after she had been dealing with this for about a month now. i just was so happy! Her GI doctor is AMAZING!!! i'm so glad we have him on our side! Especially given all the crap we go through with this hospital. Her surgeon isn't bad either. They both care so much for quinn and seem to have her best interest at heart. I dont' feel like she is just a number when we are under their care. Seriously, it's taken years to get this kind of Doctor/patient/mom relationship. Unfortunately, i KNOW this will not change how she is treated inpatient unless she is admitted directly under their care, but I'm just happy today.
So they both did her surgery. they trimmed up the outside, put some silver nitrate on the granulation tissue, tried to squeeze puss out of her stoma, and the doc said they couldn't get much out at all so they felt that the knots we were feeling wasn't an abscess, but just some excess scar tissue. WHEW! they also re-cultured it and that was the end! She didn't feel any pain... sooo happy!
The doc also gave her an IV dose of antibiotics and consulted with Infectious Disease about antibiotics. who felt that she should also have Keflex? <--- I think that's the name of it. As well as the Cipro she has already been on. He also is going to try like mad to get her some prescription probiotics becuase the activia yogurt we try to give her everyday isn't cutting it (due to her motility).
We got all this done in less than 5 hours!!! and we were just a WALK IN!!! it was AMAZING!!! Even for scheduled appointments and procedures, this kind of thing doesn't happen for us! I was so incredibly impressed by this... especially for her hospital. i hate that place.
So i am confident we have finally kicked this J tube mess in the butt for now! hopefully she won't be in anymore pain!
1 comment:
Sarah, you are amazing. The way you fight for Quinn and make things happen is just inspiring. I'm SO glad you have doctors like this, who care, who put Quinn and her health and comfort first. All doctors should be like this, sadly, you've found that they aren't, but you did what had to be done for your girl. You found doctors who will put her first. Good for you and for her.
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