Our sweet boy had his first general anesthesia for an upper endoscopy @WolfsonChildren yesterday. Mom and dad were stressed out but he did amazing.  The doctor was really sweet (and funny enough, his own son’s name is Soren too!), and one thing I like in Jacksonville is that they have great specialty care for children! 👨‍⚕️.
Everything looked healthy (which, of course, is great news) and we are waiting for the biopsies’ results now. We were hoping we would finally get some answers, but this might not be it yet. 

Because of the pandemic and the covid delta variant being insane here in Jacksonville, he had to get a Covid test with a 3 day-window before his procedure day – so Saturday morning. The test was done by a Wolfson pediatric nurse at Baptist hospital. The man was really fast. Soren hates covid tests – he got so many :(, but this time he was only about to cry when it was over. He was negative so the endoscopy was on track, and we had to self-isolate until then. I was allowed to work from home as the beginning of the months are always very busy for me.
We had to checked in at 7 am for his procedure that was scheduled at 9:10 am. His GI specialist was not available before the end of the month and I didn’t want to wait further as Soren has been very sick lately, so another MD did his procedure.

We almost did not wait before being installed in a pre-op room. We saw a few of nurses, the anesthesiologist and the GI. Everyone explained what they were going to do and asked confirmation of medical history.
We did not sleep the night before. I think Soren maybe was feeling my stress and it was stressing him out, because he kept turning and crying until 3 am (and my alarm clock was at 5:30). After they took his vitals and he changed to the gown, I turned off the light and snuggled with him so he slept a bit. My heart sank when they announced a code blue on the speakers and I held my baby a bit tighter.

Right on time, they came to take him, I kiss him quickly and tried to act cool as I was having a little panicking moment inside. Then I gathered our stuff and went back to the waiting room. It was SO fast. The doctor came to tell me how it went and what he saw (nothing wrong visually, he took as many biopsies as possible) and then I waited a bit longer while Soren was in recovery room. They took me in a post-op room and I arrived at the same time as Soren. He was awake and drinking. He looked pretty chill. He didn’t say a word to  anyone though. He is a chatty boy but not with strangers lol. He looked cozy in bed but they installed him on me in the chair, and gave him a slushy. He was quiet when the nurses were in the room but when they would go out, he would raise the hand with the IV and complain. I can’t blame him, IV are uncomfortable at best and hurt on the hand. I know I wanted to get rid of mine really badly after I gave birth.

Because he was fully awake and was drinking and not getting sick, he was released and we could head home to rest.

They told me he would be tired and dizzy, could possibly throw up (and there could be blood but totally normal) and that we had to stick to quiet activities. I was expecting a quiet afternoon and a long nap, but nope, after a couple of hours he wanted to eat and he was all over the place as if nothing happened 🙂

He looks great and can have tons of energy, but he also regularly has a high fever, not eat or do anything but sleep for a few days, have bouts of projectile vomiting, and I won’t even mention the horror stories of what’s happening down there 😬.
After getting better, it just looks like it’s getting worse and this is becoming really hard to navigate by myself. I ran out of sick days and annual leave but I have FMLA/FSWP and I’m grateful for a job that has been quite flexible with me and the health insurance it provides. Adjusting to the US healthcare system has not been easy! When you are from Europe, you are kind of used to everyone having access to care. Here, you’re lucky if your work comes with benefits. I guess it refrains people from abusing the system too, but I find it pretty sad, when my son is very sick outside his doctor’s office hours, to pause and wonder if I can afford the $100 of the ER trip.
It’s been a really hard couple of weeks, and I have been having Ménière episodes too because I am stressed out and don’t eat or sleep well. The perfect combination to trigger bad crisis.

Soren looks really good today and I hope he is able to visit his dad this weekend and go back to daycare on Monday.

I was trying to see how curly Søren’s hair was going to be, but his hair was getting long, sweaty very easily, and it kept getting stuck in the bibs. I heard his dad asking “isn’t it time for a haircut?” and since he was about to get surgery and I didn’t want his hair to get stuck on the hospital robe, it sort of gave me the push to make an appointment for his first haircut.

He was a little confused but let the stylist do whatever she wanted. No cries or complaints, he didn’t move or anything.
He went from baby to little boy in 10 minutes 😱.

We went to Sharkey’s Cuts for Kids Jacksonville, FL
1650 San Pablo Rd S Suite 11, Jacksonville, FL 32224
You can easily make an appointment to any Sharkey’s Cuts for Kids online, we took the “Boys 1st Haircut (certificate, picture & lock of hair)” package, it was $25 something before tip.

I used to write all the time. Not only to escape or live greater adventures than my life offered as a kid, but as a necessity. It’s always been my way to process, cope and let go of things. Once it was on paper, it wasn’t weighing on my chest anymore. It was sometimes so instant, that I couldn’t even understand why that thing bothered me so much just a few minutes ago. I won some writing contest prizes as a teen, then I stopped writing stories. I started writing my own in journals, then a blog (anyone who remembers 20six?), more blogs… and eventually, to the man I would marry. I guess it’s no surprise this is how we met and fell in love. I’ve had pen pals before and aside from the time I kept in touch with my best friends through letters at 15, I’ve never had such deep conversations with someone by mail. Phone “didn’t exist” for him at the time and we had thousands of miles between us, so letters were really everything we had to get to know each other. We started as complete strangers and quickly trusted each other with our real deep selves. I will never be able to explain how it happened or how this was even possible. I didn’t think it could be but I watched myself become addicted to his words and ears. So we shared and shared until we crossed that line of knowing and appreciating each other enough to recognize there was love. A beautiful love not based on anything superficial like what we looked like, but based on our raw characters, forgiven flaws, and communion of thoughts. We were never meant to meet, though we belonged together. It was a delicate journey to accept the obvious and make a commitment to each other. We wrote our way to each other, maintained a relationship through mostly letters for years, and now we are trying to manifest a future that is not supposed to exist.

Unfortunately, writing has been hard lately, for both of us. Our minds are monopolized by anger and despair. And since I don’t write, I don’t get rid of those heavy feelings. There are things you cannot share when you are in a prison relationship. Your letters are read, your phone calls are recorded, your own lawyers step into your most intimate moments by requesting everything. Only someone with a similar connection and the same means of communication, in the same terrible predicament, can understand. For and by everyone else, we had our humanity stolen. We are a number, a story, nothing is private, nothing belongs to us, no one respects the boundaries.
Some days, I wonder if a deep love that cannot be expressed is able to survive. If so, what for? Will things get better, will it all be worth it?