Duke Gardens-then and now

April 15, 2009



June 21, 2011



Travis' appointment went well. He slept through the majority of the MRI. The MRI showed no change in his back, so unless he exhibits new/worsening symptoms of his Syrinx, he will not have to have scheduled, followup MRI's. Good news!

Random is what I do best

Here is another random post for you.

Friday was a busy day for both of my boys. Riley had an appointment at Duke with his GI specialist. It was a hellish day for he and I. While he is "ok", he has been having quite a bit of GI issues. So up to Duke we went, where they prodded and poked him (literally) and he wasn't real thrilled about that. In fact, as soon as we went in the triage room, he began crying which earned him a "CRIES" note on his paperwork. He did stand on the big boy scale (23lbs still...not gaining any weight), although he screamed while doing so, and his blood pressure registered something like 145/72 which made the machine beep like crazy. . I would be interested to know what Riley's blood pressure REALLY is, but I am positive we haven't gotten an accurate reading on his since he was very very very very VERY young, because I can remember him crying, even while in the NICU during the BP reading. After meeting with the doctor,and getting a little frustrated with how that was going, Riley and I got to hang around, for him to receive yet ANOTHER contrast enema. At least it wasn't with that nasty barium this time. We walked over to Duke Gardens for a few minutes while waiting, and had a little picnic lunch and I tried to get some pictures of him, but he apparently felt violated, and wouldn't smile. Then we were called to go back for his test. This one was so different than all the others. He has always had a stump of a large intestine, with a nice, shiny little clip at the end, that glowed on the screen, and indicated that the dye had traveled all the way to the end. Well now, he is reconnected, and we needed that dye to travel from his bottom, all the way up to spill into his small intestine a little ways, so we could see that he had NO strictures whatsoever, even at his anastamosis site. But he is missing his right colon, including his ileocecal valve and it all kind of looked the same, but FINALLY, after tilting him head down, and face down, with fluid running off the table, down my legs, onto the floor into a big puddle, we could see the change from large to small intestine. But wow, were Riley and I both a big mess! But, he has NO strictures,which was fantastic (that would have meant more surgery), so we could feel relieved that his issues were strictly diet and GI function related. Although still having to deal with problems related to that, it isn't a surgical problem. So, we press on, and hope we can find a happy medium somewhere.


DUCK! Riley yelled when we saw these ducks and geese

No smiles today

"beebee duck"




Meanwhile, Travis was at school, pretending to be Michael Jordan for the day. The entire 2nd grade had a big project called Living Wax museum to do. They had to choose a famous person, write a paper on them, and memorize a short speech. Then, they had to dress up like their person, and stand around in the multipurpose room, until someone pressed their "button" (their outstretched hand). Then, they would come to life, and state their rehearsed speech about themselves, before turning back into a mannequin to wait for the next person. Over a hundred people passed by Travis!! His teacher said he did fantastic. I sure wish I had been there though. :(



Bubbles...one of Riley's current favorite things. But he's become very independent and insists on doing it himself.

And then this happens

He totally doesn't care though

Totally doesn't care that his pants are now dripping wet with bubble liquid


All dry now!


Country boys

I wish I was this awesome

Do you see him?

In all his amazingly awesome, awesomeness?
No? Well take another look.



Did you smile? Could you not just eat that dimple?


Why is he so happy?
Because of this awesome guy.

Who blew bubbles endlessly, just because it made Riley so happy


Know who else is kinda awesome?


The little wonder dog of course


Riley had an appointment at Duke on Friday. We have some things to work on to try and help narrow down the cause of his occasional vomiting ( he has had episodes that I have not mentioned on here so as to not alarm the masses :o) ). Right now, it is not thought to be a surgical issue. The fact that Riley IS a short bowel kid, even if he rarely acts like one, was mentioned as a possible cause, and he could be intolerant to certain foods. So the quest to try and figure this out continues.

it's always something

 

Today, Riley and I spent the better part of the day getting his belly checked out. Yesterday, he began showing obvious signs of discomfort and guarding of his belly. It continued into this morning, so off to the pediatrician we went. The verdict at the pediatrician's office (after she called Duke), was that he has a stitch abscess in his incision line. The simple explanation is that a small abscess formed around one of the internal sutures in his incision. Now, it has or is rupturing, making it ooze on the surface and cause him discomfort. So...we wait, and watch for signs of increasing infection, and put ointment on it. He was increasingly miserable as the day went on. If that continues, he will be going right back to the Dr. If he vomits at all, that changes things dramatically.

When the pediatrician called Duke, and she told the surgery office people, that Riley's mom had brought him in for abdominal guarding, and discomfort, they IMMEDIATLY pulled his surgeon from clinic. Dr. H said that if I say he's guarding his belly and acting off, then HE IS. He also praised our knowledge of Riley and said it was ok for us to stay home and deal with this, as we know signs of infection/blockage etc and he trusts us. Of course as good as that made me feel, it is also very stressful looking at his belly, wondering if it looks just a LITTLE bit more red this time then it did 10 minutes ago. Does it look a little bigger? He cried longer that time than he did earlier, is he in MORE pain?

Fun times here.

Showing Respect

So I said I had something.....special. Some of you won't get the full significance of it. But here it is!

This Carolina Girl knows no better way to pay her respects than this....


Thank you Duke Medical Center, Duke Children's Pediatric Surgery team, Duke Pediatric Gastroenterology, and all the fantabulous nurses that have taken SUCH great care of Riley Bear, for saving AND fixing him. It may have taken 16.5 months to do it, but whats a year and half compared to a lifetime of being "normal"?

(PS: Riley is doing ok. Obviously not 100%, probably not even 75%, but he's doing ok)

Exactly 24 hours

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!).

CT scan

Night adult radiologist says everything looks ok. They want morning peds radiologist to take one last look. But it looks like good news. Nothing obvious. !!!

Little baby big bed

This is how he happily rode to xray
Sent from my BlackBerry Smartphone provided by Alltel

Tired of waiting here at Duke.

One week and one day later

Riley has still not vomited since yesterday morning. So hopeful that is past him. Still not convinced that he had/has a GI bug. He has persistently ran a low grade fever today, and we will be touching bases with his doctor's tomorrow (Duke first). Overall, he seems ok, but as past experience has taught us, we can never let our guard down with him. Some of his steri strips have started to wear off his incision, so we are getting our first peeks at it. It was open a little bit, so had to put some butterfly bandages on it tonight, to pull it back together. His poor little bottom is feeling the pain of the 15+ poopies he is doing a day. We are lathering it up as gently and thoroughly as we can. If the super duper cream on order doesn't hurry up and get here, I may scream though (iLex for you Nicu nurses ;o) ). I ordered it while we were in the hospital, thinking that by the time we got home it would be here. Well...we went home quickly and for some reason, it's taking its sweet time getting here. So we wait and do the best we can in the meantime.

So obviously, a few issues we need to discuss with the dr's tomorrow. He also needs to pick up on his eating and more importantly, his drinking soon too. I think I spent hours today holding out sippy cups asking him if he wanted some _____ to drink (fill in the blank with a long list of options).

But in spite of all the issues he's having right now, he is as sweet as ever. His mornings have been rough since getting home, but he perks up in the afternoons some. Here are a few pictures from the past couple of days.

He spends quite a bit of time laying flat like this, but awake.

And his awesome big brother happily plays with him while he's like this (he LOVES his new Little People castle set)


After a while of playing, he needs a nap, so he just rolls over

Still rotten, somewhat sickly or not

He can get into this squat position, but can't push himself up to stand anymore right now. So he just stays in a squat until he either decides to crawl somewhere, or begs for help to stand.

We spend a lot of time reading books. He especially likes touch and feel books (and Goodnight Moon)

While Travis worked on homework this afternoon, Riley happily colored on his paper for quite a while. Then he threw the paper on the floor, which I didn't notice and colored all over his chair.