The first part of the review was gong well until they had to the ECG and that is when he just lost the plot. There was no way anyone was putting anything sticky on him, as anything that is sticky must come off. The ECG stickers have a really stretchy kind of adhesive on them and they are uncomfortable to take off but definitely not painful. However Sam's memories of tapes, tegaderm and dressings after surgery have made him very fearful, and his anxiety goes through the roof. He will NOT listen to any reason when he is in that place, and that is where he got to yesterday. If he is upset like this and anyone tries to negotiate or bribe or suggest anything he will not listen at all.
So after that great upset we then had to try and get a good blood pressure reading and oxygen saturation. After some time, they were all good, his sats still sitting on 98%.
His clinical check up with Dr Gooi went smoothly and then on to the echo. Sam was very good for the echo and stayed very still for a long time as they also had to check his lungs for fluid in addition to all of his heart.
I became very concerned when the sonographer went very quiet and spent quite some time searching for something. When he excused himself to go and get Alex (Sam's cardiologist) I prayed over and over that all would be well. When they returned together I found out that the sonographer was unable to locate Sam's pulmonary arteries, either of them! Of course I know Sam has pulmonary arteries and they are functioning well otherwise he would not look so good. Talk about knowing how to completely freak out a heart mum! They should be schooled to never go silent and then leave the room without offering explanation.
The result of the echo was that Sam's lungs are completely clear, meaning that he has now ceased to need Lasix. Wooohooo!
His heart function is great. The right ventricle is pumping nicely, the valve still only has minimal regurgitation (no change), and his aortic arch is in great shape. The pulmonary arteries are of good size and Aspirin and Enalapril are the only medications he will need to remain on. Our next review will be in 6 months and soon after that we should go to only having one a year appointments. How exciting will that be!
We have brought home some of the ECG sticker to play with at home and try and desensitise over time his aversion to that testing. We are also going to try and do some local occupational therapy to help with his fear and anxiety in regard to needles, blood tests and ECG.
I thank God for Sam's continued good health and look forward to the next days, months, and years that we believe will be the best of God's gifts yet.
|Sam was happy to go back to the hospital as long as we didn't have to stay and we didn't have to visit the ward.|
|He was trying so hard to be brave in this photo. His croc was there to help protect him. Sam's awareness level and anxiety is very high after his surgery.|
The echo took a long time and in the end he nearly fell asleep, but refused when I told him he could. He was keeping both eyes open.