Monday, August 27, 2012

Introducing: Medical Me!

When we go somewhere scary, we like to take Puppy.  Puppy has been with us since Aidan got his tube, and he's fluffy, huggable, and - well - Rose-like.  I mentioned Aidan's total adoration for all things Dog, right? 

So, here's a problem I never anticipated: Puppy broke.  Oh. My. Gosh.  Puppy broke.  Puppy's in need of a skilled needle-and-thread surgeon, which I am not.  While he awaits his surgery, I'm left to figure out how to soothe a nervous toddler at CHOP.  And then I remembered...

We have a Medical Me!

I've been waiting to introduce him, and I'm not even sure why.  I felt like I'd know when the time was right.  Here we are.  The time is most assuredly right.

Meet Baby Aidan. 

Just like my Aidan, Baby Aidan has light brown hair, beautiful hazel eyes, and a sweet smile.  He loves his blankie and his mission in life is to be Big Boy Aidan's friend :)

Baby Aidan comes to us from a wonderful woman named Chelsea over at Cerebral Palsy Mentor.   Chelsea created the very first Medical Me for her own son to help explain the confusing, scary world of surgeries, doctor visits, and tests.  This seemed like such a natural fit for Aidan!

With my help, and photos of Aidan, Chelsea chose a beautiful Haba Doll to start with.  She altered his eye color to make him *just right* and added the final touch.  I'm sure you can guess...

Yup.  Baby Aidan's a Tubie too :)

Today is a big day for Baby Aidan.  He needs to have OT this morning, and then he will run off some energy at Gymboree, and then he is going down to CHOP to have his patch tests read.  Coincidentally, Big Boy Aidan's schedule looks... pretty similar...

Stay tuned for pictures!!

Saturday, August 25, 2012

Patch Weekend

So far so uneventful with Allergy Patch Weekend! Aidan was a little uncomfortable when they were put on, but he eventually forgot about the patches and concentrated on being a troublemaker. No, darling, you are not supposed to be showering in the dog's water bowl on the weekend that we can't bathe you.  Please, little precious, refrain from using formula as body paint - just for one more day!

We're testing lots of things - including milk, eggs, corn, wheat, oat, barley, carrot, potato, beef, turkey, ham, chicken, and others.  We'll let you know what Monday's reading tells us!

Tuesday, August 21, 2012

Updates from Aidan

This week, Mommy took me to see Miss Gail.  I think Miss Gail lives at the Doctor's Office, because she's always there.  That doesn't sound like very much fun to me, but Miss Gail always seems happy to be there.  I wonder if she likes looking at the fishies on the ceiling as much as I do.  I bet she does because she's so cool like that.  Anyway, we went to see Miss Gail because Mommy said Miss Gail must really be wondering how big I was.  Mommy must have been right, because the very first thing to happen there was that I had to get on the scale.  I started crying, because I hate when everyone pokes at me, and I always get poked after sitting on the scale.

Mommy cried a little bit too.  She said she was happy that I was such a big, big boy.  But that's weird, because I cry when I'm hungry or scared or crankapotamus.  But she didn't look crankapotamus at all, so maybe she really was happy.  Moms are so funny sometimes.

Miss Gail said I weighed 21lb 10oz and Mommy was excited because last time I was only 21lb 3oz.  So this time, I was bigger.  Mommy always worries that I'm too little but that's silly because I'm obviously a Big Boy.

Miss Gail looked in my ears and my mouth and I hate when she does that.  Mommy asked lots of questions about my medicines and I got so excited because I love taking medicine!  It tastes so much yummier than my icky milk.  Sometimes my Mommy puts my medicine in my tubie, and that makes me kind of sad, because she never lets me eat anything good.  But she says some medicine tastes ickier than icky milk.  I'm not sure.  Maybe Mommy has never tried icky milk.

Mommy and Miss Gail kept making me walk around and were talking about my feet a lot.  Probably because they're so cute.  Miss Gail said that a new doctor wants to look at my feet too, probably because he's never seen such cute little feet.  Mommy said we can't go until Halloween, but if I'm really good, maybe I can wear my costume!  Mommy said the new doctor would be at CHOP, and that's great because I love that place!

When we were all done, Miss Gail let me pick two stickers.  I put one on my leg and I kept the other one for later.  Mommy said I could hold it in the car if I promised not to eat it.  I promised, and then I was super good and I really didn't eat it, even though I knew it would be really funny to eat it after Mommy said no.

I have to go to CHOP later this week with my Mommy for patches.  I'm not sure exactly what patches are, but I'm sure they're not going to be smelly, itchy, and stuck to me all weekend.  My Mommy totally would have warned me!

- Aidan

Thanks for reading Aidan's thoughts on life.  We had a good week and look forward to seeing Ortho to assure us that his foot will self-correct.  We're not sure what's wrong, except that it didn't look like this before, and now it does.  I'm not too too worried, because he has a great range of motion and isn't in any pain at all, but we'd like to have it checked out.  We wish we could get in before October 31st, but it's better than the original appointment (in mid-DECEMBER!)

We're all nervously excited for Patch Testing - hopefully another step in the right direction toward getting our boy fed!

Friday, August 3, 2012

Quick Update and Next Steps

A lot of you have been wondering what's happening right now with Aidan.  We have a few things scheduled, but for the most part, we're just working on figuring out how to do this thing called everyday life.

I've felt a little (a lot) too overwhelmed to blog lately.  I know, barely noticeable, right?  Not having a job has taken an emotional toll, and my time has been a little torn between being with my boy and finding the right professional fit.  I do want to go back to work, but I need to make careful choices for the right fit.

Anyway, coming up next for Aidan...

Patch Testing - Later this month, Aidan and I will go down to CHOP's EGID clinic to see one of the allergists for Patch Testing.  Patch Testing consists of placing small amounts of the suspected allergens on the skin and leaving them there over the weekend, to be read 48 hours later.  I have mixed feelings about this - I'm not sure what substances we're testing or what this will tell us about his EGID.  To some extent, I feel that this is a little bit pointless.  But most of me, most of the time, feels like more information can only help.  Even if this tells us nothing about his disorder and how it's presenting, we'll have more pieces of his allergy puzzle.  The hope is that this will guide us as we re-introduce foods in the coming months and years.

Surgery - This is (should be) a very minor one.  Aidan's feeding tube is currently a PEG and will need to be switched out for a Mini-One Button.  This requires day surgery down at CHOP in early September.  The thought of going back for another surgery makes me a little nauseous, but we're looking forward to getting rid of this PEG.

Once those things are done, I don't think we'll be messing with him any further this year.  He goes back to the GI in October, at which time we'll start discussing his next food trial, assuming his weight is still good and all else is going well with the G-Tube.

It feels good to be back to the blog.  I still struggle with feeling like I have nothing to say worth reading - but you've all given us so much love and support, the least I can do is let you know how Aidan's doing :)

Wednesday, August 1, 2012

The Long Awaited Conclusion - Tube Surgery Week!

Okay, quick recap...

Aidan had his G-Tube Surgery on a Thursday and we settled into his room for a one-night stay.

Thursday night should have been a quiet one.  Aidan was medded up and should have been sleeping peacefully.  But he wasn't.  He just... wasn't.  I finally broke down and begged for more morphine for him.  Tylenol wasn't doing it.  Hell, if you cut me open, you'd better be ready to pony up something better than Tylenol for days.  Help a bug out!

The nurses took pity on us (me) and gave him another dose of morphine, letting me know that he wouldn't be coming home until we knew his pain was controllable with Tylenol alone.  Made perfect sense to me - sounded like a Friday afternoon departure instead of a morning one.  Friday morning arrives, and Aidan's meds are dispensed again.  More morphine.  Interesting...

Friday afternoon brings the nurse, with the news that because he's still been on morphine today, we don't really know how manageable his pain is.  He also hasn't been given anything to eat, so we don't know if he can keep anything down.  I'm wishing I brought a few more pairs of clean underwear right about now...

Friday evening, Aidan spiked a fever.  We won't be going home on Saturday morning either, it seems.  Virus?  Infection?  Time will tell.

The fever breaks overnight, but on Saturday morning, he starts vomiting his feeds.  This is no good.  Really, no good.  We spend Saturday and Sunday changing sheets and hoping that this time it'll stay down.  It doesn't.

Monday arrives, and I have to go back to work.  This is what I had to leave behind:

 While I'm gone, there are discussions of changing his G-Tube to a GJ-Tube - but ultimately, the doctors decide that maybe he'll start keeping things down better at home.  So he's released.  You heard me.  They sent me home with a toddler that I literally cannot feed.  I almost lost my mind.  Sure enough, Monday night, he vomited his entire feed.

Tuesday, Aidan goes to daycare.  I really had no options - I needed to be at work, and I had nowhere else to leave him.  He wasn't sick, he was just hurting.  And to his credit, he really was a trooper - but he didn't eat a thing.  When I got home, I took him back to the ER downtown.  I was so angry - even now - two months later - typing this post makes me shake uncontrollably with anger.

I  managed to stay calm and explain our situation.  Baby can't eat.  Baby was discharged anyway.  Not leaving this hospital until I know how to feed him.  He may not look that sick - but the blanky being shoved into his forehead suggests otherwise.  Please trust me.  I know my son.  He is not okay.  We are not okay.

Also, note my face.  I am officially done being F'd with.  I don't remember my last shower, where in god's name are my contacts, and why is no one helping my baby?!

We are admitted.  Same floor.  Same room.  Same doctors and nurses on shift.  I can only imagine the conversations being had outside our door, but I am so far beyond caring, it's not even funny.

The next two days were a blur.  We experimented with bolus feeds and continuous feeds and fast feeds and slow feeds until I felt like we might actually be able to make this work at home.

And then came Friday.  By Friday, I had no job, I smelled terrible, I'd cried and shouted and screamed enough to last several lifetimes...  But I had this...

...And I took it home :-)