No, Really?

I bet it has been a little worrisome and a little frustrating that I haven’t posted a blog yet to let everyone know what is going on.

Yeah.  That’s exactly how I feel.

On Friday, when we were at the hospital, I was told that the radiologists would read the studies that we had done, and our physician would have the results available to him by Friday afternoon.  Since I work in a hospital, I know that to be true; radiologists usually read studies within an hour of their completion, and once the results are dictated, any physician can access the report from just about any computer.

Monday morning, I was patient. I knew I would wait until at least noon before I bothered calling.  When I did finally call at 1:30pm, I was told that the doctor hadn’t had a chance to look at the results yet, and we would be called as soon as he had.

Fast forward to nearly 5pm, when we finally get a call.  The nurse tells me that his labs are back (which were drawn LAST Monday) and that they are all normal.  He has no allergies, his CBC and Metabolic Panel were both well within the normal range.  “Great,” I said, “What about the other tests?”

“We don’t have any other results,” she tells me.  “We’ll have to wait until you’ve had the EEG and Upper GI.”

Are you kidding me?

“We had those done on Friday,” I told her.  “I was told that you would be able to get the report by Friday afternoon.”

“You’ve had both of them done?”

“Yes!  Both of them!” I was beginning to get more than a little irritated.

“Well, they must be in the computer then.  I’ll pull them off and have Dr. L look at them tomorrow and call you with results.”

“Great, thanks.  Bye.”

I wasn’t very polite at this point.  It’s not really that difficult to check to see if there are results back on your patients before you call, it just takes an extra two seconds.  This was nothing but pure laziness.

Today, while at the mall in order to get out of the house and combat some stir-craziness, I got another call from the doctors office.  The same nurse says they have the results for the Upper GI.  I can tell she’s reading it.  “It says that he has a very, very mild case of reflux, but is otherwise normal.  Now, when is his EEG scheduled?”

I seriously had to pick my jaw up off of the floor.  “Scheduled?  He had it FRIDAY.  It was ON FRIDAY.  WE’VE ALREADY DONE IT.”  How do I keep my patience, keep my temper?

“Oh.  We don’t have the report for that yet.  Someone will call you when we have the report.”

Is this seriously what people have to deal with?  Is this standard operating procedure?   Because it’s pretty freaking sad, and incredibly frustrating to say the least.

Let me be completely honest.  I’m not sitting here biting my nails, waiting for them to tell me whether or not my kid is gonna die.  He’s fine.  I don’t have a bad feeling in my gut, I haven’t noticed something so terribly bad that I’m terrified.  The frequency with which his little ‘twitch’ has been occurring has gone down to maybe once or twice a day.  But that is really not the point.  The results are in, and they are available, and my Pediatric office is too incompetent to get the results out and where they need to go.

I’m truly ready to find a new office.  It’s time.

Survival.

Woah.

Okay.  Now that mommy and Ronan have both had a much needed nap, lets go.

I put Ronan in the car and left my house by 7:25am.  The drive from my place to KJ’s place is about 2 miles, with several stop lights in between.  Seriously, keeping Ronan awake for that distance was one of the most difficult things I’ve ever done.  He was SO exhausted!  I was yelling at him, shaking his car seat, tapping him on the head and shoulder, pulling on his arm and wiggling his fingers – his little eyes just kept on closing.  I ended up having to startle him over and over, feeling HORRIBLY cruel, and making him cry.  I told myself that crying was better than sleeping, and if he fell asleep we’d have to do it all again.

KJ got in the car, and I hadn’t seen her in a few weeks, so we kept trying to talk.  Then one of us would see Ronan’s eyes slowly close, and we’d interrupt the other by SHOUTING… eventually we both just focused on keeping Ronan awake for the drive.  It was the longest 20 minutes of my life.

We got to the hospital just before 8 and went to Admitting.  All they did was pull his file out of a folder, put a bracelet on his wrist and then mine, and get a volunteer to take us to EEG.

Roger was the name of the sweet old man that guided us through the hospital.  He smiled at Ronan again and again.  He dropped us off at the EEG waiting area and left.  The tech came out and told us she was just going to get everything ready, and would be right back.

About two minutes later, she came out and said she was ready.  She took us around a corner to a tiny room, maybe 5 feet by 6 feet, with a stretcher, a counter with a sink, and a computer station on wheels.  All four of us crammed into the little green room with Finding Nemo stickers on the wall.  I noticed that  on the stretcher was a nifty device that looked a little like a TV remote, only it had about 30 wires coming out of it.  On the end of each of the wires was a little golden metal ‘cup’.  It didn’t take much imagination to figure out how those were used.  BUT, let me tell you, it’s nothing like what you see on TV – little electrodes placed all over the head neatly and cleanly.  There was NOTHING clean about this.

She first used a tape measure to mark his head with a red grease marker.  She marked something like 28 little places down the center, an inch from lateral, 2 inches from lateral, and ear level on both sides.  Then, she used a q-tip and an exfoliating scrub on every one of the marks she’d made.  Ronan sat far more still than I EVER would have expected while this strange lady played all over his head.  Next, she scooped a thick, gummy paste with each one of the ‘cups’ and smooshed it down onto his head.  It looked a little like cake icing, and she covered each paste-cup with a square of gauze.  We had to fight with Ronan most of the time to keep him from reaching up and pulling the wires off.

Once she’d gotten his head covered in cups, she put two sticky pads on his cheeks to monitor facial movements, and a pad on his chest to monitor his EKG.   She wrapped his whole head in gauze to keep the cups on and then let me try to put him to sleep.

At that very moment, construction workers above us started working.  It was so loud we couldn’t hear ourselves think.  I just started laughing.  Honestly, I thought he would probably go to sleep anyways, but I wasn’t very optimistic.  The tech called her supervisor, who called the construction team and told them to be quiet – no talking, no working – until 10:30 when we would be through.  About 5 minutes later, the working ceased and I laid down on the stretcher and cuddled with Ronan.  I patted his back and he was out in less than 3 minutes.

The tech started asking me questions for her study, and it was hard to talk quietly with Ronan laying on my chest, so I shuffled him to the side, scooted out from under him, and laid him down on the stretcher on his own.  I wish I would have taken a picture.  He was so peaceful, even with his adorable headwrap.  I asked how long he would be monitored for and she said they needed about an hour of information.  Maybe 25 minutes later, the construction workers started again.  They were making a HUGE racket, and Ronan began to stir.  The tech was livid, but she said there was probably enough information for us to be through.  She asked me to try to wake him up, and I quietly said his name while rubbing his back, which normally only takes a moment or two before he would startle awake.  This time?  I got to where I was nearly shouting his name, and firmly patting his butt – he slept right through it.  Eventually I had to pick him up, and it was finally enough to rouse him.  He was NOT a happy camper.

The tech grabbed a wet wash cloth and wiped out as much of the goop as she could.  She said that the Pediatric Neurologist would read the study that day, and then, told us how to get to Radiology.  We said our goodbyes and went on our way.

Once in Radiology, they checked us in and said we’d be going back in just a few minutes.  A few minutes turned into an hour for my poor boy that woke up angry, hungry, and still tired.  I let him walk around, and he charmed everyone that he saw.  Somehow, despite the day, he was full of smiles, grins and jabbers for all of the hospital workers we came across.  When they finally called our name, we went back into a floroscopy room and got ready.  Ronan had to take his shirt off, and KJ and I had to wear lead aprons.  We waited another 20 minutes in the room for a Radiologist to show up, and then we got started.

We laid him on his back on the table, and the doctor started shooting.  The Floro does a constant small dose radiation so he can line the baby up and see what he needs to see, then snap an image of it.  They gave him a bottle with barium in it, and he ate it gladly.  They kept him on his back, turned him right, then left, then right, then left, then right again.  The radiologist said he was having a hard time getting the barium to empty out of his stomach, but that that could be normal in some kids.  He also said that Ronan had some mild reflux, but not to a severe degree.  She said it was more likely an amount that you see in almost all kids.  He finished up and told me that he would be dictating the study immediately and that my doctor would have the final report in about half an hour.

So we left!

I gave Ronan a bottle of milk and some graham crackers, and immediately he was all smiles.  We loaded up the car, drove home, and this was the smile that greeted me when I opened the door to get him out.

I don’t know what the results will tell us.  I don’t know what will come of this.  I don’t know if it will end up being nothing at all or something terribly serious.  I do know, however, that I really am the world’s luckiest mom.

Ugh, I’m Awake!

Wow.

We kept Ronan up until Midnight last night, per his EEG instructions.  We also stayed up a little extra to pack a bag for the morning, because, I’m sure I will be in a rush as usual.  5am came awfully early.  I’m going to cheat to keep him awake with Finding Nemo (a favorite) and then we’ll possibly move on to Shrek (always makes him laugh.)  I’ve packed a bunch of snacks for when I’m finally allowed to feed him.

I’m not as nervous about today as I thought I would be.  And I have had so much encouragement and support.  I hardly feel like I’m going through this alone.  My sweet friend KJ is going to come with me as the car-waker-upper.  She’s going to stick out the day just so I’m not alone.

I figure we should be home by noon, and I will update again then.  I’m sure there will be a story to tell.

Okay!  Time to go in T-minus 3 hours!

Sort Of Funny.

I had some blog posts all planned out this week, and then everything goes to hell.

All I can think about is Ronan, and his tests, and what’s coming our way.  His EEG and Upper GI are now scheduled for Friday.  We have to keep him AWAKE until Midnight, then let him sleep until 5am, and then keep him awake until the EEG at 9am. (In case you weren’t counting, that’s only 5 hours of sleep for a boy that usually gets nearly 12.)  We also aren’t allowed to give him ANYTHING to drink after midnight until his Upper GI at 10:30.  Ten whole hours with no food, drink and almost no sleep?

I’m going to have the WORLD’S CRANKIEST KID.

And yes, I’ve already called to ask if they can do the Upper GI before the EEG, they can’t.  They have NO earlier slots.  And rescheduling will mean waiting another 2 or 3 weeks.  The Upper GI is more important to me right now than the EEG.  The scheduler also told me that if he’s too sleepy for the Upper GI, they will reschedule, but I’m sorry.  Fuck that noise.  If I keep him without food for 10 hours, you’re doing the damn test, we’ll pinch the kid.

So if Brock can’t come for the rest of the tests on Friday, I need someone to come with me.  I have to have someone in the back of the car to keep him awake while we drive.  Sucky job, but I don’t want to do all of this, and then not do it right.

We went for a walk today, it’s gorgeous out.  Sunny, but the wind is really cool, so it felt great.  I haven’t been doing enough activity lately, I could feel it in my legs after half of the walk.

I can’t get my mind around anything else right now.  I’m doing laundry today, and going to try to get the rest of the house cleaned up.  I also need to have a shower during Ronan’s next nap.  Oh yeah, he’s really cute today.  And every day.

Thanks for all the love and support.  You guys are amazing, and remind me all the time why I blog.  I will give updates as soon as they are available.

OH YEAH!  Ronan is 13 months old today.  I’ll save the Dear Ronan letter for tomorrow.

It’s Not Supposed To Be This Scary.

Ok.  First, before you read this, don’t get mad at us for not telling you what was going on.  We don’t tell everyone everything, and it was important to us to have some answers before we freaked out the cavalry.

Second, we’ll probably get more answers as time goes on, but for now this will do.

Last Friday, I noticed Ronan exhibiting some very strange behavior.  He would shrug while walking around, throwing his head down and cranking his shoulder up and smashing them together almost like you would if your earlobe was itchy and you didn’t have a free hand to scratch.  Only, he’d do it two or three times in a row.  At first, I thought “How cute!  Ronan has learned how to shrug!”

Until he did it again a little later, and I looked a little closer.  It didn’t look totally normal.  Just something about it struck me as wrong.  I filed it away as an anomaly to not worry about unless something came of it.

Later that night, Brock saw Ronan do the same thing for the first time – head smashed into shoulder, arm jerked up, and it upset him greatly.  He asked me, “Why is he doing that?  What is that?  Is it a twitch?  That doesn’t look right.”  Brock witnessed him do it several more times that night, and became increasingly more upset each time.

The next day, Saturday, we saw him do it multiple times, and began to question what could be going on.  Ear infection?  But he’s not upset, and no fever.  Maybe water in his ears?  Probably not something serious at all.  Maybe a muscle twitch?

When I got to work Saturday night, I decided to ask a doctor.  I described what was going on to one of the physicians, and he told me, “Hmm.  Yeah, sounds like it could be seizure activity.  I would take him to his pediatrician on Monday, and get him checked out just to be safe.  They’ll do an EEG, and make sure his brain waves are normal.”  He didn’t sound upset or freaked out, so I tried not to be upset or freaked out.  Then I got some text messages from Brock that told me, “I just put my hand in between his head and his shoulder when he does it.  His whole right side is seizing up, he can’t control it.”  I called him and told him what the doctor said, and tried not to let him freak out too badly, but it was really starting to bother both of us.

I started second guessing my decision, and wondering if we should take him somewhere to be evaluated sooner.

Sunday morning, when I got home from work, I woke Ronan up to nurse him before I went to sleep, and we spent a little special time together.  All of a sudden, he sort of spaced out.  His eyes lost focus, and he wouldn’t respond to me – shoulder jerk, shoulder jerk – snap back.  He acted like nothing had happened.  It freaked me out again.  So Sunday night, when I had a free moment, I called up to the Pediatrics floor, and asked if there were any Pediatricians in the hospital by chance.  The nurse told me no, but asked me what was going on.  I described to her the situation, and she said, “What you have just told me sounds very bad.  Everything you have described is bad.  I would get him to the ER right away and have him evaluated.”

“Right away?” I asked, “At 3:30 in the morning?”

“If what you are saying is accurate, I wouldn’t wait.  Wake him up and go.”

Next, in a panic, I called Brock, leaving a message on his machine and told him to wake up and call me back.  Because there was no answer, I got upset and called my pediatric office, hoping for a 3rd opinion that would agree with one estimation of the situation or the other.  I talked to the call nurse for about 15 minutes, and went through the same story again.  She asked me a bunch of questions, and then came to this conclusion: “If he’s been doing it since Friday, and it hasn’t worsened, he’s not losing consciousness or crying out in pain, I think you’re safe to wait until morning.  But call first thing and get an appointment.  I will make sure I leave a message for them saying they need to get you in immediately.”

For the rest of the night, I fretted and worried, going back and forth between one possibility and another.  Could it be a Tourette’s Tick?  I read a book not too long ago about a boy whose life was taken over by ticks and rituals, tried hundreds of different drug combination and felt like his life was entirely dominated by the judgments he was handed for something he couldn’t control.  This was terrifying.  Could it be Seizures?  What would that mean?  What if it’s a brain tumor, causing involuntary movement?  Or some other neurological problem?  What if his muscle is developing improperly?  Your brain can do horrible, awful things when idle, and I’m thankful last night was a busy night.

I got home around 7 am and crawled into bed.  I told Brock that he needed to wake up at 8am and call the office for an appointment; tell them it was urgent to us to get in.  I hoped that it would be early enough to get our fears assuaged, and late enough that I could catch a couple hours of sleep.  At 8:05 am, Brock woke me up and said to get ready, we had an appointment at 9:15, which meant we had to leave soon.

We got to the office and checked in.  When we were taken back to the room, the nurse asked us what was going on.  We described it to her, and she seemed a little concerned, then told us the doctor would be with us in a moment.  Now, I have a love-hate relationship with my Pediatrician.  He is very dismissing, and can often make me feel silly for worrying about something very valid to me, which pisses me off.  But he also takes something he deems to be serious VERY seriously, and will move aggressively to be sure it is addressed and taken care of.  He came in and asked us questions.  We went through the same description we had given everyone else, and he probed deeper.  Asked about sleeping habits, and eating.  Asked if there were any other similar symptoms.  Asked if there were anything common factors we’ve noticed that caused the reactions.

Then he brought up Ronan’s GERD.

He told us after a few minutes that this sounds fairly serious, and is worth a full work-up.  He said he was going to order an EEG to rule out Petty Mal brain activity, but he was pretty sure it would be normal.  He then said he was going to order an Upper GI, and a full food allergy panel.  The connection wasn’t immediately there for us, so he explained.

He said there is something called Sandifer’s Syndrome, which is related to GERD.  Basically, it’s the condition where a child is in pain because of reflux, and it causes them to posture their body in such a way as to give relief.  Strangely, it’s commonly mistaken for seizures.  Ronan has been on Prevacid for his reflux for several months now, and missing even one dose of his medicine can cause his symptoms to reoccur so heavily that it takes days to remiss again.  Our pediatrician said it sounds like his GERD is still very active, and not being entirely controlled by the medicine.  He also said some GERD cannot be controlled by medicine.  But he wanted to get all of our bases covered.

We spend several hours at the hospital being tested, and have to go back for more tests.  Ronan had to have several vials of blood drawn, and I think that is one of the most horrible things to have to endure.  We also had him checked for MRSA, because the spot where he had a needle that was dropped on the floor injected had developed a pimple.  (Thankfully it appeared to be normal.)  All of this on just one hour of sleep.

So, with several fears quieted, we have time to wait until all of the tests are complete and a diagnosis is given.  I’m thankful that my Ped sounded so sure, and was very comforting.  I’m thankful he was willing to move quickly.  And I hope this is all that is going on.  I’m sorry for keeping it secret, but it was important to us not to sound any alarms over something that COULD actually have been nothing.