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A Prayer for the Heart (6)

Get ready for lots of photos!

Angelica and I have both asked Johannes and he thinks it’s okay to post these photos. We have a large family circle, and this is an easy way to let everyone see and know what’s been happening. I also know that Johannes’ friends and school mates would like to see some photos, since they have been thinking a lot about him. So here are some more images from last week.


This is Wednesday Morning. At this ultrasound examination of Johannes’ heart, the cardiologists find an inconsistency with the blood pressure in the area of the right ventricle, with it’s newly inserted contegra (the “tube” connecting the right ventricle to the lung arteries). They cannot get a correct reading, however, so a decision is made to perform a catheterisation on Thursday to be absolutely sure of what the problem is. Johannes is absolutely devastated upon hearing this news, fearing first of all to be put to sleep again for a small, yet new operation. Secondly, he is told that if the catheterisation shows there actually is a problem, then another open-heart surgery will have to take place – immediately. Being still very week from his first surgery, he now has his most difficult 24 hours of his life, fighting an emotional battle he never faced before.


Thursday morning. Johannes is sitting up for the first time, but finds little joy in that. He knows that today is the day of the catheterisation, and he’s all out of hope, thinking it will only show a bad result. Nurse Anna does her best to try to encourage him.


He spends a lot of the day resting, lying here next to a picture brother Isak made for him. It shows Johannes lying on the bed, surrounded by hearts, with Isak and Clara next to him, with tears coming from their eyes. The text says, “To Johannes from Isak. I miss you. Hugs Isak”


Late Thursday afternoon. The catheterisation is done and Johannes’ opens his eyes in the “wake-up”, next to the operating room. The first thing he asks in a whisper is if he needs a new operation. When his mother smiles and says no, he sighs and let’s out a “yeah!” in English. He’s barely awake, as seen in the photo, but very relieved.


I try to wake him up some more by playing with a surgeon’s glove. Still tired, he asks me to give it to him. He put it on and says, “Take a picture of this.” Then he makes his rock sign (he’s been into that lately). Great, I thought. He’s back!


Bed time, Thursday evening. I like this scene. Mother is looking at son, comforted in knowing that he is at peace again before closing his eyes. Son is looking at mother, comforted in knowing he’s in good hands. And the light from above, falling over him, comforts us all, knowing someone else is keeping His loving arms around Johannes.


Friday we start moving around some more. This is not a sad pictures. It’s just a tired Johannes who’s done some physical therapy, wanting to rest his weary head against his father’s.


Later the whole family comes in. Clara, who hadn’t seen her brother for a few days, was very happy. And so was Johannes. I can’t tell you how joyful we were to have him back to normal again – for his sake.


Here Johannes is trading places with his sister, who didn’t seemed to mind. Actually she loved the wheel chair, as did Isak.


All of the staff were great to Johannes, and to Isak and Clara too for that matter. Here is Maria, the youngest nurse on the floor, discussing ice hockey with the brothers. Notice Isak’s look. He was spellbound by this nurse. I told him later though that she was too old for him. His response was swift. Red in the face, trying to hide his smile, he jumps me and tries to deliver a series of punches to my upper arm. Johannes laughs, and I can’t help but think, again, that it’s good to be getting back to normal.


On Saturday some of the other fathers and I took a few of the heart child siblings aside and played with them. It’s not easy for these kids either, and they certainly don’t get the attention the heart children do. So we decided to give them some quality time. Here is one dad blowing some bubbles.


“I have two questions: How do you catch a bubble, and what do you do with it once you’ve caught it?”


“And how on earth do you make them grow?”


We took these sibling down to ground level, to what is called “Play Therapy”. There they had so many fun things that even I couldn’t resist. By the way… you can call me King Louis.


Is there a limit to how cute one can get?


…or how beautiful?


On Saturday night, Johannes and I was watching the Swedish Melodi Festival. After a while we were joined by nurses Sara and Maria. During those ten minutes Johannes talked more – or should I say jabbered – than he had the whole week put together. Hmm… can’t imagine why? Good sign though, right?


This is the only picture taken on Sunday. Actually, it was just taken recently by Isak, before I put Clara and him too bed in the guest home we are living in, next to the hospital. This night Angelica is sleeping in Johannes’s hospital room. It will probably be the last night there. Then he will get permission to come to us for a few days, in preparation to going home to Södertälje.

I can’t wait.

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