Friday, November 18, 2011

One of those days, with one of those moms...

Today was a day for the record books; or at least worth noting on Max's blog.

Today was the first day in about 6 years that I ventured out with Max to doctors appointments by ourselves.  In fact, I've never been to the new Children's Hospital without help from Steve or my sister, Angie.

But, with the new lift in his van, comes new freedoms!

Max and I left with an hour to get to the hospital, and we needed it in 8:00 traffic.  We got to the hospital in time for his appointment in radiology, but they were already backed up so early in the morning.  I wasn't too worried though, because it was supposed to be a short test, and then we were on to the pediatrician's office for a follow-up with her.

Except, as soon as we got set up in radiology, I found out the test could take anywhere from an hour to eight hours, depending on how quickly the bowels move.  They were pushing barium into his gtube, and then taking photos every 20 minutes until it went all the way through his intestines to his colon.  Since that's where he's had his surgeries, the GI doctor was wanting to see if everything looked good there, and the cause of Max continued "poo issues".

I wasn't prepared.  Plain and simple.

When I made the appointment, I asked if it would work to see his pediatrician the same day, and was told that it should give us plenty of time, since the test was only 30 minutes long - at most.  Also, I scheduled the first appointment in the morning, since Max should not fast for tests, as his metabolic disease does not jive with not eating for long periods of time, and his epilepsy does not jive with not getting medicine on time.

So, when the nurse told me it could take up to 8 hours, and no, he couldn't eat yet, and we would need to cut his pediatrician appointment short, I was not too happy.

Max was though.  He was in an uncommonly happy mood for being at the hospital today.  Maybe because besides the robot pictures every 20 minutes, he got to be in a room with robots, and lots of echoing walls, and watch cartoons all day.

After the first few photos, taken by xray, we were rushed over to his pediatrician across the main floor of the hospital.  The nurse had called ahead, and they said to just check in and they would get us back right away, since we had to be back over to imaging in 30 minutes.  (Yeah, right!)

I waited in line to check in, and when it was out turn said, "This is Maximilian Watson, he's here to see Dr. P., the nurse in radiology just called over and his doctor said to let her know when we got here to be sent back and seen because he's in the middle of testing in radiology.".

The check in receptionist desks at Children's seat about four check-in admins, all very busy checking in for all the clinics on the floor.  It seemed like there were quite a few clinics today, because it was packed!  I think I got the new recruit, because she leaned over and asked who she needed to call to send us back for Max's appointment.

This was where things got a little weird.  Her desk mate said, "Who told you to call them when he got here?", the rookie said, "she did", pointing to me.  Desk mate says, "No.  You don't take her word for it, these moms will say whatever to get back when it's not their turn.".

I'm standing right there.  Max is in hospital pants and has a mask on his face.  He's wearing a hospital bracelet.  Do I look like I'm just here to chat it up with the doctor?  Do I look like I'm trying to jump some imaginary line?  I must have had that written all over my face, plus some not so nice words as well, because she smiled at me and said "Not that you're one of those moms, we just never know, so we have to check every time.".

One of those moms.  

I didn't have the time to argue with her, we only had 20 minutes left at this point to get back over to radiology.  But, it stuck in my side and dug around all day.  You're right I'm one of those of those moms who got up at 5:30am to get my son to an appointment an hour away on our only "free day" of the week.  I'm one of those moms who is proud of the accomplishment of getting out alone with my child for the first time in years.  I'm one of those moms who has spent months at a time in that hospital watching my son fight for his life.  And I'm not a liar, and I certainly don't enjoy spending my time having my intentions questioned.  Just rude.

Anyway, the pediatrician appointment ran about an hour long.  It was rushed.  We didn't get to visit about all the great things Max is doing.  I brought his talker computer and his school notebook for her to see, but got off on more important things and forgot to get them out to share.  He's the same weight, and we're changing his formula, so it's not so involved of a mixture.  It will be 3 ingredients, instead of 5.

Once we got finished there, I rushed back over to radiology...only wait.  There was a mix up when I checked back in and no one told them I was back with Max.  So, once we got back there, it was musical rooms for a while until they got us back in the original room he was in.   This is where I went a little bonkers on the poor nurse.  It was 1:30 in the afternoon, and we had been there since 8:00am.  Max had still not received a full feeding, I needed to be home to let the dogs out - because George is still a puppy - and Max would be needing his afternoon meds by now.

When the radiologist told me it would be another 2-3 hours, I had a mini melt-down.  I knew she wasn't the one who told me it was a 30 minute procedure, but I was pretty sure she could find the person who was at fault there, so I let her know about my extreme frustration.  We decided to call the GI doctor to see if they had enough images to go off of, and when he came back and said they need to get to the colon to get the best test possible, we called metabolic.  He'd gone so long without eating at the normal rate, I was nervous of him getting dehydrated, or not getting enough nutrients.  If he were home sick and not eating for that long, we'd be in the ER getting an IV.

So, metabolic was called.  It was Max's first metabolic doctor on call, who rarely sees Max in clinic anymore, so he had no idea what amount of food Max was on a day.  We went over all of that and he told me he was okay, he just would need to eat all night long to catch up.  Oh fun.

Extremely long story shorter...we finally got out of there at 4:30.  My sister came up around 3:00 to feed me, and be a sounding board.  And my friend Susan was able to go to the house and let George and Olive out for their potty break.

As soon as I got in the house and Max settled in his chair, the phone rang.  It was the GI doctor.  He apologized for the awful miscommunication, and let me know the results of the imaging done.

Max is full of gas.  Just in pockets throughout his bowels.  He mentioned a special feeding bag for it, which we've tried before and don't really see a ton of difference.  But, we'll try them again.  And wants Max to have another imaging test from the other end of his bowels to see how large his colon is.  He said it looks like Max's intestines are just bigger in some areas than the others.  There are things to help with the gas, but he wants to try the bag first.  So, 8 hours of waiting to hear that Max is a little fart monster.  Man, I wish I got paid the big bucks.

Like I said, a day for the record books.  And because I was by myself, I had to keep myself busy with taking photos of my happy boy.  Here they are for you to enjoy.  I'm going to start Max eating again, and go to sleep!

Waiting to be called back.  During respiratory season, Max gets to wear these fancy masks around the hospital waiting rooms!
photo (17)

It's a little blurry, but you can see he's lost another tooth!

photo (19)

Holding him up and on his right side so the barium could travel as it should through his intestines.
photo (20)

Waiting for more pictures, in his sporty hospital pants since his got dirtied with a blow-out...agh that reminds me those are still in his bag, better go through them in the wash!
photo (21)

And, home at last and eating!
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1 comment:

Thia said...

Ug. I have nothing nice to say about that whole mess up. Thank God that day is history.