I'm not even sure how to start this post i'm so worn out and emotionally drained right now. I guess i will just start off with how the day started. We got to his ECHO appointment at 1:30. They do the usual measuring and weighing of him, no biggie. But all the trauma started with him needing a IV for his sedation, i kept being told by other people that it was just medicine he would swallow, so i was thrown off when i found out he was getting an IV, but surprisingly he did really well. (as well as a 1 yr. old would do) they were supposed to come get him soon after, they didn't come get him until almost an hour after they put the IV in, i can tell you how stressful this was. First off pax hasn't been able to eat since 10 that morning so he was starving. And second he HATED the IV he kept trying to pull it out. We were trying to distract him and entertain him as much as we could. When they finally came back and got him i was some what relieved because they were going to sedate him and i just thought oh good he will get a little nap in and the ECHO will go smoothly, OH BOY was i WRONG. You see you never know how someone will react to medications so we had no idea what we were in for. They give them 3 different medications to sedate them, the first one is just to calm him down and then the ones after that actually put him to sleep. When he felt the first one he got really funny and was actually giggling and thought it just felt funny. when they gave him the next 2 that were supposed to put him to sleep he all the sudden got really aggressive and mad, he actually stayed asleep for about 15 min, but the ECHO can take up to an hour. so he started waking up after only 15 min and i mean screaming his head off it was so traumatic for everybody, and at one point his oxygen got really low and he needed an oxygen mask. She even tried to give him the maximum dose she was allowed and it didn't do ANYTHING, he was still awake screaming his head off. finally at one point the lady performing the ECHO stopped and said she would go check with his cardiologist to see if she got all the images we needed so we could just be done. THANK GOD she got them so we then headed up to recovery. I thought once we were in recovery and got the IV out and we could hold him he would calm down, once again i was WRONG, we could not calm him down NOTHING was working this kid was PISSED. the poor thing even started throwing up, it was AWFUL. and to end the day we got bad news from the cardiologist. He has a condition called Coarctation of the aorta. Basically there is a part in his aorta that is narrow (almost a complete blockage) that is restricting blood flow to the rest of his body, so he needs surgery to widen this part so the blood can get to the rest of his body. If he doesn't get this surgery it is pretty much lethal. We know one thing he is getting some blood to the rest of his body because he has a pulse and decent blood pressure in his leg, so that tells the doctor its not a emergency surgery. So he will get the surgery within the next month and it is a 5-7 day stay at primary children's hospital. I just lost it and started bawling in front of the doctor, i could tell he felt really bad he just reassured me that he is going to be totally fine after this, and live a totally normal life and have no health problems from here on out. His heart was perfectly healthy it was only this one little narrow part in the aorta. so that was a relief, he said sometimes in these cases they will see problems with the heart.
I still am trying to digest this news, it is so awful to know something is wrong with your baby, i just cant believe this is happening to us right now. We are home now and pax had some dinner and is in bed now doing much better. I just cant wait to get this behind us, honestly i would want the surgery done NOW just so we can get it over with. I will post when his surgery is scheduled once we find out.
and i have no clue why the font changed all the sudden, sorry.
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