Saturday, May 26, 2012

Beach Babe!

It's official: Owen is a Beach Babe! Okay, well maybe not so much beach (the sand was not welcome on his little toushie!) but he is most definitely a Florida water baby!

My parents invited us to tag along on the vacation to Destin. After much debate (okay, like 20 minutes....) we decided that as long as Owen's doctors were okay with it, then we would start packing! Of course his amazing doctors encouraged us to jump at the chance of a week of relaxation. Let's face it, twice weekly labs, multiple doctor appointments and caring for a newly transplanted babe have been a bit exhausting! Not to mention, once Daddy starts residency there won't be any vacation time for a while!

We decided to leave a day before my family and drive down to Birmingham, AL. We were unsure of how Owen would handle being in the car for such a long ride. Well, of course, he was nothing short of an angel!

Of course we stopped at the Space Shuttle in Huntsville!

Picnic with Dad :)

Catching up on some Elmo in our room.

Ready to finish out the drive to Destin!

We were able to take our time leaving for Destin the next morning, as we were a bit ahead of my family. We actually met up with them on the road and made it to the condo in time for a little fun on the beach before the sun set!

Owen's first look at the beautiful sand and water!

I think he liked it! :)

After not napping the car all day, the waves put this boy to sleep!
We had an absolutely wonderful week and are so thankful for the invitation. It was so relaxing to have a week off of doctors appointments, labs and phone calls. We love our doctors, but boy it was nice to have a few appointments with my lounge chair rather than the hospital! We loved seeing Owen explore his future home and enjoy time with his uncle and grandparents. :)

He was NOT a fan of the waves crashing on him...yucky sand!

Swimming with Marlee :)

He found a new BFF in Uncle Will. He's been working hard on saying his name, too!
Owen loved, loved the ocean (the water only!) and of course the pool. He could spend all day playing in the water! He's sporting quite the tan and his perfect blond curls even lightened up a little more. :) It was a wonderful week full of laughter and love and we are so grateful to Marlee and Pops for the invite!

Wednesday, May 16, 2012

Little Break Dancer

Owen has always been one to show his excitement through his "dancing, happy feet", however he's taken it to a whole new level now. He's moved on to bustin' out some break dancing moves!

I'll admit, this boy's got some moves! Enjoy. :)

Sunday, May 13, 2012

Dr. Daddy (and other adventures!)

The day we having been waiting for finally arrived. After 4 long, long years....Michael graduated medical school! Okay, so it may have been a bit harder on him, but I was still there for the ride. :)

I am so incredibly proud of Michael and all that he has become. Surviving medical school alone is no small feat, but surviving medical school while overcoming the battles and struggles our family has faced the passed couple of years is nothing short of amazing. Michael's perseverance and determination to reach his goals, serve and guide our family, and continue to be a God honoring father daily blesses me.

Since Owen is still in what is considered "protective isolation", meaning he cannot be in public areas (unless going to the hospital, in which he is under his "bubble") my parents graciously offered to babysit so I could attend the ceremony.

Michael's family made the trip up and after our necessary photo shoots we made our way to Michael's favorite restaurant, Regatta.

After lunch Michael headed over to the school and I ran home to catheterize Owen, hook up his tube feeding and lay him down for a nap. Everything was going as planned, completely normal, and I didn't worry one bit leaving him with my parents. After all, how much trouble can a sleeping baby really get in to? Oh boy, was I ever wrong!

Once I made it to the ceremony I let my Mom know she could text me if she needed anything. About 10 minutes into the ceremony she texted me to let me know he was fussing, but his eyes were closed. I assured her he would fall asleep, just make sure he was comfy and his music was playing.

Then, 5 minutes later I get this: call me. ASAP.

Not exactly the text I was hoping to receive. I tried to quietly call her from my seat, but all I heard was blood curdling screams and she was yelling something about Owen's g tube. Believe me, I moved my pregnant body through the (forever long) aisle of seats as fast as I could go! I was panicked, to say the least. I left my camera with Michael's sister and her husband graciously rushed me back home. While on the way, I was trying to give my Dad instructions as to placing the tube back into Owen's belly. Let's just say there is a reason the Lord did not call me into ER nursing....I don't exactly handle emergency situations that well. Especially when they involve my precious babe!

By the time I made it home the hole in Owen's belly that holds the g tube was quickly closing. I tried a few times to replace the old one, and then I opened a new one, hoping it would work. We immediately decided a trip to the ER was necessary. Michael had driven our van to school, so I didn't have access to Owen's car seat. However, Michael's sister had just returned Owen's infant carrier that she had borrowed for her son. So, I packed my 30lb boy into the infant seat and we jumped into the car and sped off. My Dad kindly reminded me a few times that getting into an accident wasn't going to solve anyone's problems. (It's possible I was driving a bit fast for his liking!)

My panic continued to escalate upon our arrival to the ER. Let's just say, they weren't quite in the same hurry we were in. After weighing him, trying to get his medication lists, checking his temperature and going through what felt like a thousand procedures that had nothing to do with replacing his g tube, I was quickly loosing it. They finally got the message when the tears started flowing and my voicing started raising. I should say, my Mom was amazing at working with the nurses and giving them all the information she knew at the time. My Dad-cool as a cucumber. :)

So, all in all, things worked themselves out. They were unable to replace the tube immediately, as his hole was getting too small. It took about an hour to use some different replacements to stretch it back to normal size and they were finally about to successfully replace his button.

Unfortunately I missed graduation. I longed so badly to stand and cheer for my husband as he walked across that stage, so deserving of the honor he was receiving. My wonderful sister in laws video taped the walk though:

 I'm grateful for the memories I'll have, and of course will never, ever forget the events that took place on Michael's graduation day. I'm so happy Owen is safe (my fear was that he would need surgery to replace the tube.) and that Michael was not aware of the crazy happenings going on and was able to enjoy his ceremony.

While I probably overreacted (okay, seriously overreacted) I know we will be better prepared if this happens again the future. I can only imagine how my poor parents felt while waiting for me to get home! I am so grateful for them and wouldn't have made it through the whole ordeal without them. Hopefully we haven't scared them off forever....our babysitters are few and far between!

So in all, a huge congratulations to my amazing, hard working husband who has officially earned those two lovey initials behind his name, thank you to our family for making the drive up to celebrate, and a million thank yous to my Mom and Dad for trying to make a stressful situation a little more bearable!

Cheers to you, Michael Daugherty, M.D.

Sunday, May 6, 2012

An Official Goodbye!

Owen will officially be saying goodbye to dialysis tomorrow afternoon.

He is having surgery to remove the PD Catheter that was used for his dialysis therapies. The surgery is fairly minor, and generally outpatient. He will also be having the stint in his bladder removed as well. (This was placed during transplant to keep the connection to the bladder and new ureter open while it healed.) So after tomorrow, we are officially free from dialysis! wooohoooo!!

Our nephrologists have also decided to biopsy his new kidney. Don't freak out. :) Everything is fine. :) Shortly after transplant we had a difficult time keeping Owen's levels of rejection medication in the recommended range. The range they preferred was 10-15, and for some reason, Owen remained steady around 8. He is on quite a hefty dose for his size, so the doctors would like to do a biopsy to see exactly how everything is going on in there. Long term use of the current rejection medication can cause kidney damage. (We're talking years, here.) The plan is to switch to a different rejection med in about 6 months. His doctors have kept his steroid dose a bit higher to compensate for the lower rejection levels. However, he is now far enough into post transplant that his rejection levels are expected to be in the 7-10 range, so he's perfect-of course! :)

Owen's creatnine (blood level we look at to measure how his kidney is doing.) has been rising a bit. Now, his kidney was in such crazy overdrive at the beginning that his numbers were low, very low. In fact, we had already had conversations about how it was inevitable that his creatnine would rise, and how difficult it would be to watch it....well that's where we are now. Our nephrologist told us from the beginning of transplant that he felt he would level out somewhere around .3 (he started at .14) and that's where he currently is. So, no one is worried things are going haywire, it just so happens Owen will already be sedated and it's a good opportunity to do a biopsy and make sure we are giving the appropriate dosages for his medications.

We would appreciate your thoughts and prayers tomorrow, as sending your baby back for surgery, no matter how long it may last is never, ever easy. His surgery is scheduled for 3pm and shouldn't take longer than 2 hours. We will be staying the night, as they like to monitor patients for at least 10 hours after a biopsy, so we will just camp out in our lovely hospital beds. :)

In other news, Owen has completely turned into a new kid. And by that I mean a loud, babbling, moving, speed crawling, nap-boycotting, sticky, dirty, mischievous boy! And you know what? I love it! He is literally getting into everything he can get his hands on and is getting stronger by the day. The poor kid has carpet burn on the tops of his feet from crawling so fast a furious through the house!

Owen has also been working on his "beach babe" status for when we make our move to Florida. He is loving splashing in his pool and is working on getting a great tan! (Please, don't worry...the child is doused in sunscreen, his parents aren't exactly the darkest people around!) He is getting a little tan, though and his curls are getting lighter by the day! He will be breaking girls' hearts before we know it! ;)

Thank you for your support and prayers, especially tomorrow. We will update after surgery and will, by the grace of God, report a beautiful, healthy kidney, just as we have prayed for!