cinco de mayo... cinco de surgery

It's 4am as I'm writing this and we are already on our way to Knoxville for Gideon's eye surgery - and what a saga this alone has been.

As many of you know, we were due for a bronchoscopy a few weeks ago to look at Gideon's airway and remove his trach. 3 days before that was supposed to happen, Gideon had a cold and we had to move it out a month. I haven't sat down long enough to write up that post so I'll include it here.

Having a sick kid is never fun. Having a medically complex kid that gets sick, even though he's getting less complex as he grows and gets stronger, is really not fun. He actually handled his cold quite well and did typical things, like most 20 month old's do. He needed extra naps and extra snuggles. We went back and forth between being really happy and laughing to just melting down and needing to snuggle or nap. He felt the best after we did a contact nap later that day. And the next day, he was back to himself. There was still some thick mucous that we were working around, but otherwise he was back to baseline. I always watch the kid themselves and how they're behaving, because if something is actually wrong, they will show/ tell you. But with him getting a cold 3 days before his bronch, we had to push it out. Our doctor (or any doctor) can't get a good picture of their airways when there has been inflammation in there. Understandably so and we want the best possible outcome. I on the otherhand was a hot mess, internally. I am realizing that as things sort of "calm down" around here, the memories and feelings start to finally flood in and process from the past 2 years. It's just a matter of working through them but let's face it, it sucks. I have never been an anxious person in my life and to see those physiological symptoms happen and know that's not me is a lot to deal with. But hey we're getting there and Gideon is doing GREAT! I'm sure it's a blessing in disguise to have to move the bronch out too.

So back to Gideon's eyes. This saga has been going on for almost a year. Or more than a year. We saw an opthamologist here in Chattanooga last year. She told us to begin patching Gideon's right eye to allow his left eye to get stronger. We did that for the better part of last year but definitely slacked off this past fall. Fall. 6 months ago. We followed up with her around September/ October and she wanted the surgeon to check Gideon out because she was fairly certain he needed an eye surgery - he has exotropia of the left eye and was not using it completely or in sync with the right eye. So we waited for an appointment with the surgeon. In December. The first thing he said was that he was retiring and doesn't want to start a surgery that would more than likely take 2 surgeries and he will be referring us out. He then says that this surgery probably already should have happened because he will be losing eyesight in his left eye the longer he goes. The things that would have been nice to know - and if it was that urgent, why wouldn't they already refer us out previously, knowing that he was on the path of retirement. So we waited again for that referral. Which brought us all the way up to last Monday. April 28. A week ago. Almost a year after our first appointment.

So we met with the new opthamologist and LOVED her. She was so kind and polite and well versed in everything going on with Gideon. I had a lot of questions (like is he really losing eyesight in his left eye - and no he isn't). She examined him and was so gentle with him. Hands down the best eye experience yet. And halleluljah he is using his left eye. It's not losing eyesight. His eyes may not be in sync, but they are both strong and working. The original diagnosis has changed and he is improving. She said our patching was working, which as I stated before, we hadn't done in almost 6 months. Miracles are still happening in Gideon and we are here to talk about it. This still could be a 2 part surgery, but as she explained it, she likes to take a conservative approach. So here we are and we will know fairly soon after (4-6 weeks) if he needs another.

Which leads me into the next piece and realization I have had recently (and really this could be a post all of its own). When you live in the medical world or are living in the hospital (basically like we did for Gideons first several months of life) it's as if you're in another timeline. My other kids love The Flash TV show and they get into all this made up stuff about timelines and how all these different things are happening and you can alter the timelines, etc etc. But it really sunk in this past week of how it feels this way a lot of the times. Every day coming home from the hopsital when Gideon was in NICU/PICU, it baffled me that there was still traffic. That it was hot and sweaty outside (since it was summertime). That people were getting together for happy hours or going on vacation or doing normal human things. Because that was not my reality. I felt like I was in this vaccum of time. My brain was filled with medical terms and how to manage all the things about to come our way - O2 leves and CO2 levels and g-tubes and tracheostomies and ressusitation for my tiny boy. All while still raising two other children. And so very thankful for an extended time out of work. This all hit me this week as one of our sweet trach friends was laid to rest. I received the news last week and felt the saddness creep in and then looked outside and literally saw everything around me still humming along. It is the wildest feeling and I don't think enough people talk about it. If it's not directly affecting you, you are able to carry along with your day - to-do lists, cooking dinner, work, errands, the list goes on. We live in such a busy and multi-tasked world that we don't think about what others around us are going through. We try to explain it to friends, but I know the majority don't understand it. I think unless you live it, it's just impossible to understand the gravity of what others realities really are. This isn't a woe is me - but more of a slow down and look at what someone else might be dealing with. It's a challenge to look up from your phone and connect.

On a happier note, scroll through to see some more recent photos of Gideon and how far he has come!

Big boy high chair

creative discovery museum with the Chattanooga Trach Families

meeting baby goats

hanging with big bro at the park

snuggle naps when he had his cold