Thursday, November 30, 2017

Jingle All The Way

Part 1: 

Two weeks later and we find ourselves back in a familiar position. A place where the staff knows our names and have seen Hazel grow up over the last 4 years...where we have started to learn about as much about the nurses home lives as they know about our own.  It’s nice to know and be known to some extent I guess.  Exactly one year ago we were here for Hazel’s 4th cornea transplant and today she is having a less severe surgery in an effort to make that same struggling eye better.  

It’s 9:30 at the moment and she has been in the O.R. for close to 2 hours...a longer wait than we are used to...

Hazel is growing and maturing with every visit here. She is learning how to cope and she communicates better than ever about how she feels...what would make her comfortable...what her options are in any situation. Today when it was time to go back to the OR, the anesthesiologist and OR nurse found out that Hazel likes to sing Jingle Bells and likes to find that ornament on our tree. She didn’t want to be held and didn’t want to walk so she chose to sit on the rolling bed with her they rolled down the hallway with jingle bells playing on the nurses phone :)

More updates soon...

Part 2: Post Op and Beyond

It's the day after surgery and things have settled down.  Shortly after I wrote and published Part 1 of this post we were met in the waiting room by Hazel's surgeon who gave us a brief reports and brought us back to sit with Hazel in post-op.

The procedure itself was the first time we have done anything in the area of her retina in the back of the eye.  The membrane that was clinging to the area was multi-layered and took a lot of diligent work to remove --  in the words of Dr Spencer, it was a "tedious" surgery to complete...hence, the time.  What could not be seen until some of these layers were gone was that the retina had actually detached near the base and surgically placed back into position.  We were not expecting the retina to be detached because it never showed in her exams under anesthesia, but the positive view of this is that we got her back in for surgery so soon and now we can work towards resolving it.  

Hazel took longer than normal to come out of the anesthesia but I think we also came back sooner than we normally do.  As per usual, the nursing staff was amazing and always takes care of our girl.  It's always a mystery about how Hazel will react when she wakes up, I think this time around we got the sweetest...calmest....most reasonable version of post-op Hazel that we've ever seen :)  She was still barking out orders of who could sit on the bed and who should stand, when she wanted Cheerios or when chocolate milk was in order...but I'll take bossy over upset any day.  

Mom and Patient

This part might be more info that everyone needs....but, well...whatever...I'll make up for it with a cute picture below.  Hazel threw up in the car for the first time following any kind of trip to the surgery center.  Luckily it didn't end up being a big deal and the most likely cause is that Dad and Mom let her go a little crazy on the amount of chocolate milk after being down that long.  Oh well, at least we got her car seat cleaned out in the process.

A few hours later she was back to her old self...eating and watching tv.

Six weeks from now (early January) we will go back in for an EUA to see how effective these measures were and to remove the sutures in her eye.  Until then, not expecting to post many updates.  

Thanks to everyone who is following Hazel, commenting, liking, praying or reaching out to our family.  We are truly lucky and blessed to have the support that we have and it is just as meaningful now as it has ever been.

If I don't talk to you sooner, have a wonderful December and Christmas season.

Tuesday, November 21, 2017

Exam Results & Next Steps

I'll admit, not my most creative or well-conceived blog title but it gets the point across :)

Last week Hazel had an exam under anesthesia to check her overall eye health and to specifically look at the fluid in the back of her right eye that is clouding her vision.  We were nervous about how the pre-op portion would go as well as the result of the exam -- but God went ahead and did that thing that only He can do and gave a situation with our biggest worry the biggest sense of calm. 

Hazel is 4 years old now and she is far past the stage where she forgets things, for better or worse she has a steel-trap of a mind for experiences and knows what it means to get in the car in her PJs vs going to the same building for an appointment.  So when we got to the surgery center before the sun breached the horizon there were some tears and whimpering but she never lost control.  After a few dozen trips to the surgery center we know some tricks to make things weighing her at home before we arrive so she doesn't have to stand on the scale...and bringing the latest and greatest assortment of toys helps her mind stay occupied.  Hazel chose to bring her Lego structure which alternated between being called a "church" or a "school".

Hazel and Mom before her exam

The exam itself went really well and Dr Spencer (Retina specialty) was able to get a good look at both we got a bonus visit from Dr Dao, who is Hazel's Ophthalmologist.  We were anticipating that the fluid in her eye would not resolve itself based on her history -- which it did and it didn't at the same time.  There was a mix of things in the back of the eye: blood, fluid and a membrane.  The blood and vitreous fluid actually did resolve on it's own, but what we couldn't see from an in-office exam on eye sonogram was the membrane that is hanging out near her retina in the back of the eye.

The Good News:  This is a good root cause for what is blocking her vision and is easily resolved through a surgery.

The Bad News:  Usually we can do this surgery on the same day, but due to her sties and the higher risk of infection we have to schedule this in 2-3 weeks.

No dates have been established yet but we will be back in the surgery center before the end of the year and the procedure shouldn't be terribly invasive or painful.  Honestly, the hardest part of doing these is the added trip to the center, the coordination of schedules, the follow up visit the next morning....all necessary evils but when you've done it two-dozen times it adds up. 

Stay tuned, I will post again when we have the surgery date scheduled!

Wednesday, November 15, 2017

Exam Time Again

Well, it's been a long time since my last post in May...partly because there has not been anything out of the ordinary going on and partly because having two kids is exhausting.  Nonetheless, we're back and blogging again because it's time for another (say it with me now)...EXAM..UNDER..ANESTHESIA!  

Tomorrow morning (Thursday) we are taking Hazel in with a slightly different cast of characters who are looking at her eyes.  The focus this time around is mainly on her right eye; there has been some fluid that accumulated in the back of her eye and we have been visiting our retina surgeon (Dr Spencer) for the last two months or so to keep tabs on it.  The best case scenario is that the fluid and blood that is back there would resolve itself and drain -- but from my experience and seeing how Hazel's body functions...I'm not confident that it will be gone tomorrow.  If that's the case, Dr Spencer will do a minor procedure to remove the fluid that is clouding the vision in that eye.

To add more factors to this equation...poor Hazel had a rough fall at school last week and the frame of her glasses gave her a sizable bruise on the bridge of her nose and a big red scrape down the left side of her nose.  Plus a swollen lip for good measure.  She has also been struggling with sties on both eyes that are painful and take time to heal.  Couple all that together with a change to a new room with older kids at daycare and it has caused her to have a rough week.  

So how is this important?  Well, Hazel isn't a baby anymore and she doesn't forget things...she has been really gun-shy lately and feels the pain on her lip when she eats or wipes her nose.  It's been a bad week for her and I'm worried that she isn't going to handle going to the surgery center as well as she usually does.

I'll close how I usually close, by asking for anyone who takes the time to read this to take the time to pray.  We are praying for a smooth "sleep" and wake-up from the anesthetic, praying for positive results on her eye health (cornea clarity, eye pressure, no other vision impairments) and for Hazel to handle the situation like a champ.  Updates coming tomorrow on the results :)