I was not feeling well mentally and I had not for a couple of weeks back. I was severely depressed but of course I wanted to handle it myself. Strangely I could not put my finger on anything special I was severely depressed of, naturally much had happened in my life the last 6 months. I am a bubbly lifefull person but I turned in to a depressed zombie who cried because she woke up from sleep or that she survived the trip with the car. Don´t get me wrong, I was not suicidal, I was not ready to kill myself I just hoped it would happen, of course very selfish, but there is a limit to how much you can handle yourself without ventilating. It hit Nigel hard to hear me speak in that way. If it happens again I have promised bot Nigel and myself to grab help, for all of us.
James started to eat less the 29th of December, so we started to write down how much he ate and how much he threw up, because we could see there was a difference. It was Nigel, Mum, Dad, James and I this weekend. We went out for a trip in the car and out hiking in the woods.
We were just about to drive to Copenhagen when James vomited all over is winter-overall. We passed by the mall and I went in to the hysterical sales to buy him a second one. It was not the first time it happened when we were about to go somewhere since James always has vomited more than a heart healthy child. Nigel and I decided to wait to go to the hospital. Maybe it was just a bad day? James was bright and cheery considering. We went to a lovely Italian restaurant in Copenhagen called Vesuvio. We had a lovely time and food. James started to be more anxious. Leaving the restaurant I called ward 67 and they wanted us to come with James at once to the child ER. We stayed there until 2.30 in the morning. Poor Mum and Dad were there with us. We could go home again but promised to return back the next day for a check up.
I went in to child ER at 8.00 in the morning. James was ordinated fluid and the doctor wanted James to stay in overnight,, on New Year Eve! James was loosing fluid and quickly needed fluid to not drop in saturation. But he was not there yet so he was in no danger. I said to the doctor frankly that we would not stay over night with a drip when I could put down a feeding tube on James and feed him myself. The stressed doctor looked really surprised on me and said “eh yes of course I will talk to the cardiologists about it, I have to do another phone call though”. They ended up putting a tube down, gave James some extra fluid, made sure he kept it down and gave me new tube syringes so I could hand feed him until the next day since we did not have any more feeding tube necessaries anymore. We were home at 17.30 and I started New Years dinner. Nigel had driven us to the hospital and later went off to do the grocery shopping which took hours since it was New Years. We had a lovely New Years. James was way back in his flid so I stayed up on and off during night to hand-feed him as slowly as I could.We brought James to ward 67 at 13.00, as I had agreed with the doctor. Cardiologist Thomas Higgins greeted us. James greeted him by vomiting by his shoes and the cardiologist ended up cleaning up the floor. It had been hard for James to keep down the fluid I gave him. He needed it yet again to go in slowly and frequently so his tummy didn´t react so harshly. Our brave boy had eaten by himself the last couple of months which made us very proud. It was not expected of him to do so. Now he was back where he was before. He needed help and he became more flemmy which made his tummy react when fluid came down quickly it was shut back up again. Which is very common among heart babies. Thomas started the ultrasound. James was in a good mood. Thomas who is an American originally asked Nigel if he wanted him to speak English or Swedish, he replied with Swedish please. Five minutes later Nigel turned to me and spoke English which felt ridiculous hahahaha. Thomas ended up explaining the important medicine terms in English to Nigel anyways. James heart looked just splendid and Thomas was pleased. James started baby talking to Thomas and I a giggled and said he probably speaks to you in English which made Thomas laugh. He is a very nice and sympathetic doctor. Thomas arranged for us to have a feeding pump with us home and all the necessaries with it. Now it was James with extras again ;o).
The following two weeks I tried to give James 2 hour meals with the pump but realised he needed a slow flow frequently. In the evenings I usually gave him 20ml to remind him of how to eat himself, plus for him to get some moist in his mouth, but for the most part it came up again just as quick it came down. We would try after the second operation again. He should get stronger again so he can eat by himself again, hopefully. I don’t take anything for granted anymore.
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