The nightmare...


Now we have a lot to tell you... I have never been through such an emotional roller coaster, the only thing that comes close is when we were told that Emily had heartproblems ...

It began yesterday ... We were waiting in the ward to talk to the anesthetist and surgeon for the upcoming operation. After talking to the anesthetist at 16 o'clock we were told that there has been some changes. They wanted to make a new CT scan of Emily as they were concerned that there would be a blockage or narrowing of her MAPCA-vessels and that would be the reason that her saturation was dropping. Before this, she must receive an anesthetic and was therefore she was not allowed to eat...

After having this information we met the surgeon who would perform Emily's surgery and he was very accurate, informative and straightforward in how her heart and pulmonary veins look and what he wanted to do during the operation.
Here's a little summary:
Emilys pulmonary veins leading from the heart is underdeveloped , they are there but are very small. Instead, her body has made extra vessel which leads from the aorta to the lungs (MAPCAs). What the surgeon planned to do was to put these extra vessels together into one and lead them to the right place from the heart and then if it was possible close the hole in the heart. It was a big operation that would involve a heart-lung machine and would take most of the day to perform, she would then have to be sedated and kept in intensive care for several days. But the CT scan must be done first so that they had such a clear picture as possible before the surgery, if the vessels were blocked, they must change the plans...

We had to try and entertain Emily as much as we could  during the fast, all she wanted was to get her food, she had not had any food since 12 am. We were told that the scan would be at 18:45 but before that Emily would have to have some sedatives. She received the sedative and was pretty groggy, but she didn't seem to mind, she was singing and entertained us and the nurses all the way to the anesthetist. When the needle was in she was anesthetized and we had to go back to the hotel and wait.
It did not take long before they called and told us that she is awake and she wants her food! :)

We rushed over and found a very indignant, still a bit groggy and very hungry girl. She could not decide whether she would be upset or not, so it took a while to get her to eat the contents of the bottle ..:) After a few songs from dad she calmed down and we had to stay on the cardiology ward overnight. We were also told that the scan had shown that the vessels looked like we had hoped, and no stenosis could be found, so everything were going as planned ..

7.30 today it was time for a bath before surgery and after that it was time for sedatives again. Once again Emily sang and blew bubbles on the way up to surgery, I stayed with her until she fell asleep ...

With heavy steps and one million thoughts in our heads, we returned to the patient hotel, and wandered around the room until we both fell asleep. None of us slept particularly well and woke at the slightest sound.
When the phone rang, we were both surprised, the clock was only 13:45.
The surgeon told us that everything had gone well and that Emily was fine but that they had not been able to do what they had anticipated. Her MAPCA-vessel was too small and the risk of Emily was too big. On the other hand, they had found that Emily's underdeveloped pulmonary artery on one side had grown and it was one of the reasons why she felt so good. They therefore put in a shunt from the jugular vein down to the other side to stimulate the growth of the left side of the pulmonary artery and also to increase the pressure. They also moved one of her extra MAPCAs from the aorta to the pulmonary artery so it ended up in the right place. It had stenosis and if that had not been done the risk of her lung getting damaged were to big.

My, my, my... it was a lot to take in but they did not have to use the heart-lung machine so the operation had not been as great or demanding as we had anticipated and she might just have to stay on the IVA in one day . We were told we could come up and see her within the hour and meet up with the surgeon.

With a lighter step, we went to have some coffee and talked about how good it would be to see little one again and that everything had gone so well.

We walked toward the elevator in the children's hospital when the phone rang ....

It was the ICU ... Emily had become worse and was rushed back in to surgery, and she was still in there.

If there is a devil he could not have been more successful in his intentions to harm us. Again we fell into the abyss, mind spinning in our heads, what had happened, will she survive?

We were told when we came up on the ICU that she was still in the surgery and that her pulse and blood pressure had gone down very dramatically, they had no choice but to open her again to see what happened, she was now stable in the operating room. They did not know how long this would take but they would call as soon as the operation was over.

We wandered out on the town in order to dispel thoughts, none of us said very much, words were just not there ...
Shortly after 16:00 the surgeon rang and said that Emily was now stable again and the operation was over, and he could not explain what had happened, everything looked really good when he opened her up. We were invited over to meet him, and then Emily.

We went back to the ICU and got to meet the surgeon. He told us that Emily had only been inside the ICU for a short while when her heart rate had dropped and he was right near when they rang and they had rushed into surgery again. He himself was a bit shocked at what had happened, it could be that one of the drainage had been pressed against the heart and caused it all. He said they had woken Emily up a while after the last surgery and she seemed to be ok, he did not think this would pose no further problems for her.
What this means is more future operations, more investigation and that the hole in the heart is still there... I myself worry about whether she has received some injurys, because of what happened .. Not until she is awake (hopefully tomorrow) I will be able to relax.

Now finally we have got to see and kiss our little girl ... She was now re-sedated and on a respirator. She looked so small and delicate where she slept with all the tubes coming out of her. We will see her soon again but right now we have to find our footing and gather strength.

I know it might be much reading and a bit messy and vague ... I'm sure you will understand that after what we have gone through today I had not even thought about writing anything here ... But I know there are many out there who are wondering, I want to let you all know how it is right now and I will write more soon ...


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