24 hours. That is EXACTLY how long Riley and I were at Duke yesterday/today. I know this because of the time stamp on my parking stub. It was to the minute when I went through the gate to leave the deck today.
My phone battery wore down and I had to conserve what little there was left of it by no texting/emailing/twittering/blog updating. But here is the long version of the day/nights/days events:
After talking with the surgery team yesterday, we all agreed that Riley for sure needed to be checked out. With the vomiting he had had, some odd behavior and a persistent and nagging low grade fever, and his past history....it is always better to be safe than let something nasty build up.
So he and I set out about 20 minutes after I hung up with them for Duke. We got up there just after lunch and although the surgery NNP who we adore called the ER ahead of time (they couldn't get us in via the clinic, ugh), when we got there, the ER did not notify surgery we were there. Jay finally called the office to let them know, and then things happened much more quickly. We were put in a room in the ER and an IV was started on Riley to draw bloodwork for labs, and as a "just in case". They numbed him up and he barely struggled. Once again, they were able to obtain a vein on the very first stick. Hooray!
Surgery also ordered an xray (KUB and cross for you med folks ;o) ) and I got a good laugh when they asked me if he had ever had one of these before as we walked in the room (all radiology stuff was done in the ER last night, not in Pediatric Radiology due to the late time). As I helped them get Riley in the right positions for the two xrays, they said "you have done this before haven't you". I told them he's had dozens and dozens of these.
After these results come back, a new attending surgeon that is now at Duke rounded to give me the results and let me know that she would like to keep him overnight, on IV fluids, for observation. I don't protest but wish at that point, I had taken a little extra time before leaving home to grab clean clothes. Or at least a shirt, but oh well. Turns out, this new surgeon was hired to begin a Pediatric Bowel Transplant program at Duke. Did you know that even existed? We did. Its something parents of kiddo's like Riley and other GI diseases hope and pray their children would never need, as its not very successful a lot of the time, but it's hope. Just an interesting tidbit about the new surgeon. Basically she's a bowel expert! But she is NOT familiar with Riley. So she did discuss him with Dr. R who isn't Riley's surgeon, but is familiar with Riley all the same. When HE heard about Riley's issues, he told the new Dr. H (two Dr. H's now Kellie!!) that Riley's insides are NOT to be trusted, get a CT scan on that kid STAT!!! I was floored and yet giggled when I heard he said that (those were his words). So the awful task of preparing Riley for a CT scan begins. They would like him to drink 4oz of a radioactive contrast dye that is mixed with juice. Last nights juice was regular, purple grape juice. Anything past 1oz and he has always vomited it up. Well...lets just say there is a cocky dr that works in the ER and he INSISTED Riley have at LEAST 4oz before the scan and I told him over and over we'd never make it. Riley of course won't drink it willingly, so I begin having to force feed it to him via syringe. He does surprisingly well with it, and I think that he may just make me look like a fool to the cocky Dr. Then...my boy that I know so well, SPEWS purple radioactive liquid ALL.OVER.THE.ONLY.SHIRT.I.HAVE. sigh (he will also pee and poop on it before the night is over)
Inform Dr. attitude. He says try again, I say no way, do it with what he's consumed. Then he comes back with forms for me to sign, to consent to sedation for Riley during the CT. I'm a little confused, as Riley has never been sedated for one of these, so I only agree, after some somewhat heated discussion with him, to sign the papers with the condition added that he is sedated ONLY if he's agitated when he gets in there. The sedation drug had a likely side effect of vomiting he said and well, hello! that is why he's here. Don't make him vomit more, after he's already vomited up your nasty old contrast dye. Turns out, he laid there quiet as a mouse, with me holding his arms up over his head and him clutching his bear. He watched the CT machine spin round and round curiously the entire time and didn't even flinch. Again...don't tell me I don't know my kid!
So the CT is over and back to our ER room we go to wait for results. At this point I am pacing in his room. I know that a CT will give definite results of if he has any leakage going on. But once you know...you know. And I'm not sure if I'm ready to know! But I'm going to know now for sure, and so I paced. Finally, Dr. Attitude comes in and says "your nurse is calling report up to the floor, he's been released by surgery to go up". Now the reason we were still in the ER, is that if the CT scan had shown some issue that they wanted to take care of tonight, it was easier to get to the OR from the ER than from the 7th floor. That is how serious they were about his issues. IF there had been a leak, they were going to take him to the OR last night, in the middle of the night, and at the very least inserted a drain.
So I ask the Dr if that means the CT scan is clear. His answer? "There is nothing that they need to take care of tonight". Excuse me?! What does that mean? That there is nothing to take care of at ALL or nothing that they want to do in the middle of the night? He doesn't know, and just brushes me off by saying "surgery will round in the morning, they can tell you more then". Oh no I say. I want to know NOW. So after a slight struggle of the words, he pages them and they come explain to me that the CT is essentially ok. BUT, they can't OFFICIALLY declare it as ok, until the pediatric radiologist reviews it in the morning, since he is a child. But that it was ok. It showed an area of inflammation on his right side (where his stoma was), but that was completely normal for his type of surgery. There was no leakage or anything concerning. Ok I say, we can go upstairs and sleep now!
So we go upstairs, and get him settled in up there. About 2am he and I both are able to get some rest. In 30.minute.increments. UGH!!! Then today, the attending surgeons, who make the final "yes you can go home" decision, have all sorts of emergency cases to work on. Finally, one of them has a chance to review the final CT scan report and clear Riley to go home. He called Riley's nurse and said that everything was ok, we could go home, and if I was ok with the NNP on duty doing the discharge, she could go ahead. If I wanted to wait and speak to them, it would be a while. I said...bring on the NNP! I talked to the surgeon the night before, so as long as that scan is clear, that is all I need to know. Plus, he had really perked up since the IV fluids got started, so we think he was also dehydrated, although officially, his lab work was ok.
So after discharge, he and I get on the road home and get home just about 15 minutes before Travis. Riley was THRILLED to see Travis!! He has eaten GREAT today and drank a decent amount also. Praying that continues.
So that's the long version!
A little funny: the Duke ER has a metal detector you have to go through. Well, there were still some metal scissors in Riley's diaper bag that usually were in his ostomy kit, but apparently they didn't get put back in the kit last time they were used, because they were still in the bag. I didn't realize it, and the guard pointed them out to me with a raised eyebrow and asked what they were for. I said "they were for cutting the wafer on his ostomy bag, but you can keep them if thats the rules." He sat there with a stunned look then let us pass. I laughed to myself. Riley was packing scissors at the Duke ER! Criminal.
Finally, I am going to end this epic blog post per Travis' request of posting his new, favorite joke. Hopefully no one will be offended. For those of you that either a) do not have children or b) do not have any BOYS, you can see right here what your missing ;o)
There were 3 kids named Poop, You're Crazy and Manners.
They were all riding a golf cart.
Poop falls off.
You're Crazy goes to get the police.
The police asks "Son, whats your name?".
He said "You're Crazy".
The policeman asks one more time..."what's your name?"
"You're Crazy" the kid says.
The policeman says "where are your manners?"
You're Crazy says "over there...Picking up Poop".
:o)
Pictures tomorrow! Something......special.
HUGE HUGE HUGE thank you to my lovely ladies who rescued me today. And to the equally lovely ladies and gents who OFFERED to rescue me (with clean clothes/toiletries/food). You all mean to world to me (us!).
