Monday, December 5, 2016

Cornea Transplant 4 Recap

I am a few days late on posting an update, I started this post from the surgery center on Wednesday and pieced the rest together over the weekend.  Sorry for the delay!



Wednesday 11/30/16
I hate being here, no offense to the surgery center, but sitting in this waiting room anxiously passing the time, trying to escape via music or Instagram or texting or whatever...we've just been here too many times. I've lost count of how many times Hazel has been in this scenario. We used to keep her tiny gas masks at our house, thinking it would be a neat memento and reminder of all she has endured...but after you get past 15 or 20 masks they just become sad reminders instead. I think in lots of ways we have just learned to look to Hazel's future and not fret about the past.  Sitting here as the sun rises, surrounded by people waiting for their elderly patients to be done with their surgery while we wait for our frequent-visitor toddler...today is just tough.

Alright, I said three years ago this blog is 98% Hazel and 2% for Aubree and I...think I've used up my talking space.

This morning is Hazel's fourth cornea transplant, she's had one in her left eye and this is the third in the right.  We have 1 or 2 tricks up our sleeve for keeping her calm before going back to the O.R. and honestly, she did better today than most days. The nurses now call her medical bands "bracelets" and we draw little stars on them, Hazel voluntarily let's us do her pre-op eye drops, the new anesthesiologist brought her a puppy toy with a tiny pink crate.  I also owe a special shout out to "Christmas Monkey" (Curious George) and Daniel Tiger on the iPad.  This is a method that has been refined over time :)  This time around, they had Aubree walk back with her to the O.R. to help the transition of using the gas mask and getting her to sleep.  The staff said it made a difference and this time was better...but if this is better it makes me really sad about how poorly she usually reacts before going under. Maybe it's just a blessing that we haven't had to experience her raw emotions and her reaction when the procedure begins.  Not sure I would of handled that situation with as much grace as my wife.  At the end of the day, these are necessary surgeries and no 3 year old would be excited to willingly participate.

About 90 minutes after going back, we got a recap from Dr Bowman and Dr Smith.  It was a two-part procedure...her glaucoma tubes needed to be re-positioned since they were slowly moving out of place and getting clogged in the process. A scary number that we anticipated today is her eye pressure was up to 40...if it wasn't surgery day this would be a horrifying situation...but with her tubes cleared up we expect that number to drop by more than half. Anywhere in the low to mid teens is ideal, but 25+ is when the warning alarms start sounding. The new cornea also went on without any issues with the exception of one or two blood vessels that will make her eye more red than normal for a few weeks. It looks bad but the blood doesn't make it any more painful. I suddenly feel like I'm being too robotic about this....THE SURGERY WAS A GREAT SUCCESS!!!  One of the tubes that needed to be re-positioned was causing irritation and pain for Hazel...which means this surgery will be a serious improvement on her quality of life.

Exhausted and asleep after the procedure


The only hard part this time around is that Hazel had a really, really rough time coming out of anesthesia. The longer she is under the harder it is for her to normalize, but this was something else. She was focused on ripping off her eye patch and refused to be distracted or reasoned with...she is a year older now than her last surgery and the recognition skills of a three year old seem much further along. We spent about an hour playing defense and keeping her hands out of her face until she finally went to sleep with the aide of some additional meds and what Dr Bowman deemed the "Civil War bandage treatment" for her head. It was physically and emotionally draining...Aubree and I were both stressed at the situation and each other.  Tears were shed by patient and parent, toddler punches were thrown, but we made it through to the other side.

At this stage we're just trying to be diligent with her recovery plan and eye drops. Once the sutures are removed in January our prayers will be aimed at the future and that transplant 3 is more successful than cornea 1 or 2.  I don't know if we can keep up the pace of one cornea transplant in her right eye per year. It's just too much for her. It's too much for us... we just want this one to last for a few years.

Back on her bike by the afternoon

Anxious to hold little sister at the house


After three years of posting I am as grateful now as I was in 2013 that so many people pray for Hazel and for us. Praying for situations that are difficult can make you question why things happen in the first place but I can tell you from my experiences that Hazel's story has produced more positives and reasons to praise God than anything else. Life is just tough...but it doesn't have to feel that way if you surround yourself with supportive people and realize that there are some things that are far beyond the control of any one person.

Until next time...

Warrior Hazel at her post-op visit the next morning



Monday, November 14, 2016

Big Sister Hazel

Wow, this is officially the longest period of time where I haven't posted a blog update for the Hazel Report, but maybe that's a good thing.  The turbulent waters that Hazel was born into are calming down as she gets older and I think it's fair to say that her vision and hearing loss are now more manageable...not that any of this is really in our control, but we can keep her up to date with check ups and therapy and all that good stuff.  Unfortunately, today is not one of those days where I get to pop on and tell everyone how great it is going...after three long years, our little girl still fights every day for things most of the world gets to take for granted.

Sorry, I wanted to rip off the band-aid first and post a disclaimer that not all news is good news today...so let's get some positive vibes out there and then I'll come back to what's on the horizon for Hazel.

If you didn't already know, Hazel is now a big sister...a very, very proud big sister and her focus each day is 50% dedicated to "Where is Sawyer??" and giving her dozens of kisses on the head.  Our little girls will share the fun fact that their birthdays are one day apart as Sawyer Elizabeth came into the world three years and one day after her sister.  We weren't sure how Hazel would handle sharing the spotlight, especially because she is behind on her speech due to her hearing loss and other factors; this means she is behind on her ability to rationalize, communicate and have things explained to her in a way that she can cope with changes.  In any case, the Lord knew how much we struggle with explaining concepts to Hazel so he just went ahead put love for her little sister directly into her heart.



We were also excited to be a (small) part of helping spread the word on Fearless Hope, the non-profit organization founded by our close friends Dallas and Chris Fears.  Their daughter Finley was born blind in a similar manner as Hazel and NBC 5 recently did a feature story on the foundation and it's origins, so I wanted to share a link below.  We are also attending the Fearless Hope Gala this Saturday 11/19 to raise funds dedicated to helping other families of visually impaired children, to hear encouraging stories of hope from others and to spend time with those who support these special kiddos.

Video: http://fearlesshope.org/fearless-hope-story-on-nbc/

Fearless Hope Gala: http://fearlesshope.org/gala-sign-up/

Alright, enough stalling..time for updates.  Like a lot of kids with early cornea transplants, Hazel has one strong eye and one weaker eye, in her case the weaker eye has always been the right.  The right eye has struggled more with glaucoma and eye pressure, it is the eye that usually requires more attention, more eye drops, more surgeries, the list goes on...  To this point, the right eye is also the eye that already had one cornea fail and needed a second cornea to be put in right around this time last year.  We don't have a concrete reason why this imbalance exists, but its a trend that seems to happen for kids like Hazel.  This morning we went in for an exam under anesthesia and the report is that the right cornea is cloudy, the corneal wall is too thick and the whole cornea is failing.  So now we are looking at cornea transplant number three on this eye.  We still have time to help her right eye gain strength and develop, but the more times the eye rejects a cornea or her ability to take is light is impaired the odds of having two healthy eyes reduces.  She is only 3, so this isn't a time to sound the alarms and panic, but Aubree and I both know we need to dedicate the time it takes to do things like patching her strong eye every day.  I'm praying that as she gets older we can reason with her more often and she will wear the patch...but it's been a struggle to this point.

The surgery will be scheduled in the next few weeks, so as soon as we can get her back to the surgery center the better.  Today was not totally unexpected but it was still very defeating in lots of ways.  We know that there is never going to be a point of total stability with Hazel, but it still scares us when the ground below us starts to crack and shake.

Wednesday, January 13, 2016

Fearless Hope

In her first week alive, we took Hazel to see her cornea surgeon for our initial consultation and to get some guidance on how to best care for a child who is visually impaired.  Dr Bowman immediately put us in touch with a family who he said really reminded him of our family -- and that's how we became friends with Chris and Dallas Fears.  The Fears have a daughter (Finley) who has a similar condition to Hazel and was born blind.  Finley has been through the process of learning about corneas, learning about glaucoma and the Fears had a lot of great and insight into how to handle everything as a parent.  Their friendship and support has been a HUGE help to Aubree, Hazel and myself.  

The Fears family is passionate about helping out others and have started Fearless Hope, an organization that is Christ-driven with the goal of providing care for children and families along with emotional support during tough seasons of life.



This Saturday, January 16th, they are hosting the inaugural Fearless Hope Resolution Run (5K and Fun Run) to raise awareness and funding.  The run is in Frisco town square, includes a t-shirt and the cost is $30.

Hazel and parents will be there, the weather is warming up, this will help you meet your New Year's running resolution....what other reasons do you need!? :)

I hope to see lots of people there!

Links:

Run Registration: https://secure.getmeregistered.com/get_information.php?event_id=122905

Fearless Hope Page: http://fearlesshope.org/

Hazel's story page: http://fearlesshope.org/hazels-story/