When I sat alone without Jonas at a completely normal routine check-up at NUS in Umeå in May 2021 and received the news about suspected Marfan, they ran out of me in the car, I was shocked and sad, referrals were written for an operation on the eye was an urgent measure and would probably take place sometime in the summer, so very close. I had a hard time taking this in, having struggled with my son who has had insane migraines since birth and was sick pretty much every day for several years, when I thought about it, it felt like a fart in space compared to what I have and struggle with now.
Called Jonas and cried as he felt guilty that he didn't participate in the examination, but we didn't take into account that we would get a rare diagnosis shoved in our face.
A lot of thinking and of course googling after the announcement, we were terrified when we saw pictures of Marfan patients and we were a little taken aback that no, she can't have this, she doesn't look like them...long crooked and some with hands and feet taken out the fairy tales.
2021-07-13, the day it was dax, landed at the hotel for check-in and then on to the hospital which was a few blocks away.
Insanely sweaty, 30 degrees in Gothenburg, the registration started with a stick in the nose, Jonas was not allowed to participate, this was sooooo sickly horrible to go through this alone because of the "pandemic"
Freja was registered, surgery was to take place the next day, today everything was planned with anesthesia etc... the best part was that in this plague heat we didn't have to stay but could return to the hotel later to come back in the morning! That feeling of being together, yes Jonas and Freja, was unbeatable in this stress I was carrying.
In the evening at the hotel we enjoyed a dinner
because later Freya would be fasting.
The morning when it was time for the OP, Jonas left me and Freja outside the hospital where we hugged, so terrible not to be together at this moment.
Just as horrible and hot today, all the ventilation systems were turned off because they were terrified of corona, I've probably never been through anything worse, so sickly hot. Freja was given emla cream and waited to be driven down for OP.
They were sickly educational about the anesthesia as they played with Freja so the whole experience would be as nasty as possible. She was given some sedative that would do
her a little drunk and this too would affect the memory of the event.
I was with her the whole journey until she finally fell asleep in my arms...they were so fucking awful, all mothers and fathers know how it feels and the thoughts of hoping she wakes up again haunts one's insides. I then had to leave the hospital to be with Jonas and have breakfast. I cried, it was so horrible to leave your girl there :(
I had a stomach ache, felt stressed the more time went by, it was impossible to relax because you just sat and thought about Freja. After a couple of hours, Jonas left me at the hospital where I went up to our room and waited, and waited and waited...heat stroke and sweating...no Freya....
Finally they came and took me down to the loft where they had AC!!!!! There lay my little child sleeping with cords and tubes :(
She slept for a long time, I could call Jonas and tell him I was awake.
Finally Freja woke up and she was more like drunk and confused and started to tear at everything that was stuck and on her and started vomiting...easily happened during the anesthesia.
I had to hold her on my lap for a long time, she slept for a long time and when she woke up a little better, she got an ice cream.
The best of all was that we got to leave the hospital when she perked up and peed, we got to be together as a family in the hotel as long as we kept an eye on her so she didn't touch it.
Dinner in the room and Freja was still tired.
The operation took over 4 hours, it was complicated and the surgeon had to re-plan because his first attempt to change the lens did not work but the capsule the lens was in cracked believe me yes so he sewed the lens, got to see the pictures the next day. I'll see if I can actually get them from him. Unbelievable what they can do with something so small and fussy.
Freja would have three different kinds of eye drops 8 times a day so we had to set a timer, she would have this for three weeks, no bathing and anything else that could damage the eye.
Beloved children, you were so good, we love you!!!
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