So More Possible Issues with Cameron

[nedsmehlp]

Scott, I am so sorry you and Cameron are going through so much! Please know that my thoughts and prayers are with you and Cameron. You are such a giving person, sharing all your knowledge of the DS. I appreciate all the information you have given me. Because of the person you are, you have a lot of people that care about you and are hoping everything turns out good for you and Cameron.

 

[DSRIGGS]

Scott, I am so sorry you and Cameron are going through so much! Please know that my thoughts and prayers are with you and Cameron. You are such a giving person, sharing all your knowledge of the DS. I appreciate all the information you have given me. Because of the person you are, you have a lot of people that care about you and are hoping everything turns out good for you and Cameron.

Thank you for saying such a kind thing. I really do appreciate all the support I receive from this wonderful group for me personally and for our son Cameron.

 

[aaa]

So glad you're staying on top of this.

 

[Jbandmmomma]

Behind on staying informed, but sending my positive thoughts to your family.

 

[Butterfly]

What a nightmare I'm so sorry for Cameron and your whole family. I can't imagine how draining this has to be for him and all of you. I wish I had good advice, but I don't. I'll just send my best wishes.

 

[DSRIGGS]

What a nightmare I'm so sorry for Cameron and your whole family. I can't imagine how draining this has to be for him and all of you. I wish I had good advice, but I don't. I'll just send my best wishes.

Thank you for the thoughts. It is just our life and sadly we are kind of used to it.

His colonoscopy result was good so that is a positive. I have no idea why the CT scan showed wall thickening of the colon and said suspected colitis...but glad it was okay. He has surgery on the 14th to pull out the pain pump reservoir because it is causing pain, very sharp pain at times. Then the next day meets with and Adult Oncologist (first time with somebody be sides his Dr at St Jude). On the 18th he will have his liver MRI.

 

[hilary1617]

Scott,

Happy to read of the colonoscopy results and sorry he is still having pain. He's in my thoughts.

 

[revisionDS]

@DSRIGGS poor baby at least you got some normal results with the colonoscopy, sometimes it is worse on the parents to see our kids go through hardships. ahhh like @hilary1617 stated I always get copies of my lab work, pathology reports, hospital stays, operative reports, MRI, CT etc...everything. Last year I had an abdominal CT and part findings were normal and unremarkable gall bladder. Ummm I had my gall bladder removed years ago with the DS.

 

[k9ophile]

We definitely always review records after being discharged when they show up online, but it such crap that they don't give copies of all that stuff before final discharge so it can be discussed. Had I known Cameron's CT showed a possible ileus we wouldn't have allowed him to be discharged without a discussion with the physician.

Have you ever asked for those things at discharge? If you're like me, you just want to get the hell out of there. It's also more than likely that the nurses and doctors want you to go away ASAP. It's not necessarily because they don't want to do a nice exit conference, but in reality they're often busy getting things in shape for the next admission.

When I first got into health care, nurse worked 8 hour shifts. Now most of them work 12 and staff is cut to the bare minimum. The patient to nurse ration is inhumane for both the patients and the nurses.

 

[JackieOnLine]

I'm so sorry this is not over, I wish you all the best