Friday, September 5, 2008

Another Footprint in Our Journey

Besides being at the hospital from 10am to 5:30pm, the day went quite well. We started with Aiden's ultrasound on his kidneys (to help rule out Branchio-Oto-Renal syndrome) and they looked "unofficially" nice & healthy. How can a mom not ask? I know it's not their job, but they know what they're looking at, and I'm going to get any info. I can when I can. PLUS, Aiden has BOTH kidneys! This is good, because my dad only had one and this is another sign of BOR.

One hungry, tired boy, waiting oh so patiently!

After the ultrasound, we had about an hours wait until the MRI. We got called back to start the process at about 12pm, but Aiden didn't go anywhere until after 2pm and my boy was HUNGRY! They were going to give him an IV and then drops to sedate him (I didn't like the IV thing before sedation), but then decided that the better bet was to give him a local anesthetic since the MRI was going to take almost 2 hours (on his head/ears & neck for the branchial cleft sinus he has). I'm glad they went this route because I didn't want them having to sedate him again through IV once the original "drops" ran out after 45 minutes. My hardest part ... watching my little man get the mask ... broke my heart and I just couldn't watch. "Strong mommy ... be strong for your baby ... he's going to be okay", is all I could keep telling myself.

I sat and waited, and waited, and waited. Finally, after about 2 1/2 hours, they called me back. My baby was awake (and very hungry)! By the time I got back there he had already sucked down 2 bottles of pedialyte. After snuggling my baby, I asked the question about how soon I could get the results, the anesthesiologist said our ENT should have them by next week and then gave me Aiden's MRI scans & ultrasound on a CD to take up to Maryland with me! How about that! I'm taking that CD into the ENT's office next week ... I can't wait two - four weeks for results, especially if I have them in my hand now, with no clue what I'm looking at!!

All in all, Aiden did great - all day! What a trooper he is! He just amazes me ... at 5 months old. I am so proud of him! On the way home I thought about all he's been through, all we've endured together, all we've endured as his parents, and we've only just begun. Yes, I have my bad days, my sad days, my angry days, but so much more I have my happy days. And I reminded myself, it's all what you make of it, and I choose to make it a great experience!

We just completed a big part of our journey, a piece I like to think of like a fork in the road. This piece will tell us which direction we need to go next. And no matter which way it is, we'll be ready to take that next big step. I have faith that God will lead us in the direction we're meant to walk. We're on our way! How exciting!

11 comments:

leahlefler said...

Aiden looks so little in the hospital gown! I'm so glad everything went well and hooray for two kidneys! Hopefully the ENT will get you in right away to discuss the results! Our ENT's office gave me the unofficial lowdown (Nolan's was normal), but we don't get the official results until September 17. And he had his MRI back in early August! I'm certainly glad the office staff could tell me that it was normal, because I couldn't wait a month and a half!

Drew's Mom said...

So glad to hear things went well...one more step down. He'll be hearing before you know it!

Bill and Shelly said...

I am just getting around to checking in on many of the blogs...this getting up at 6:15 to get Jared ready for school is really cutting into my computer time. There is a lot of catching up for me on Aiden's progress.
So glad that everything went so well yesterday, that is great news about his kidneys-one less thing to worry about. :-)
Wow, you are moving!! I am sure that this is an exciting, but scary time for you all. I live in Maryland for 3 years-I really enjoyed it and loved being so close to Washington DC. We will pray that you find just the right people there to care for Aiden. Johns Hopkins is a great hospital, so you will be in good hands.

Bill and Shelly said...

sorry, it should have been lived in Maryland- my fingers don't work well before noon. ;-)

Mikki said...

I am so glad Aiden did so well! He is such a little cutie pie!!! I was nervous when Sophie had her CAT scan and she did great!!! It seems like I am the only one not doing so well emotionally!! But I guess that is how were are wired. Seems like Aiden is a little trooper!!! He will be hearing in no time!!! But I know it seems like eternity...i will keep you guys in my prayers.

Landon's Mom said...

Glad everything went well. He's that much closer to hearing!

Patty's Mom said...

I have a 17 year old daughter with BOR Syndrome. While I am not a doctor, I have learned a fair amount about this syndrome over time. It is great that Aiden had a clean ultrasound, but not all BOR Syndrome kidney issues are structural (i.e. will show up on an ultrasound), some are at the cellular level. You might want to ask for a urinalysis at his well child checkups just to make sure he doesn't have one of the sneaky cellular kidney problems that can't be diagnosed by ultrasound. Good luck with everything, it is all manageable even thought it seems totally overwhelming at the beginning.

tammy said...

Patty's mom,
Thank you for this insight! I didn't realize this. Aiden has his 6 mth well baby in a couple of weeks and I will definitely bring this up!

Loudest Mom said...

I'm so glad the kidneys look like they're 'normal' :) I HATE waiting for test results.....I used to ask the technician for their unofficial opinion also-LOL.

Ben's Mom said...

Tammy,

I live in the Northern Virginia/D.C. area and Dr. Niparko is our surgeon. I'd love to talk to you about this area.

Kate

kkohler said...

What a hurdle to overcome! Way to go Aiden! Every day I am amazed at how resilient kids are!