10 days. 10 long days spent in one room. Alexander spent 10 days in the same room, not understanding why he couldn't go out of the room or go outside. It breaks my heart that he had to go through with it, but he needed to be there. While he was there, Alexander lost 2 pounds. :( Alexander was weighing 22 pounds going into the hospital and now he's barley 20 pounds. Some of you may not realize how long it took Alexander to get to that point. Because of his heart working harder, his body burns calories so much faster. This was all because he was sick and the environment he was in. He wasn't eating well and when he did, he wasn't keeping some of that food down. He was requiring oxygen to stay within acceptable levels and being confined to one room, didn't allow him to have the room to move as much as he wanted.By Day 7, I was beyond frustrated with everyone and everything. I wasn't feeling well and just wanted him to get better and get home. Frustrated with the nurses being so hot-handed to increase his oxygen and not allow him to recover from any desaturations. Frustrated that we were both stuck in the same room. It wasn't until a cardiologist on Thursday morning suggested to take him off of oxygen and see what he does. Sure enough, he showed everyone that he didn't need it. The goal to go home was to have a good day and good night. When Saturday morning came and we were told he could go home!
Alexander has been home for 6 days and he is SO HAPPY! He is smiling all of the time, getting into more things than he did before his surgery and illness. He's eating ALL OF THE TIME and on the move everywhere. He's greeting anyone that comes to say hi to him and is just so much happier
now. So now we play catch up. Catch up on laundry, household chores, bills, therapy, everything! Alexander still requires to be on oxygen, but only 1/4 liter at night. When Alexander takes a nap, he doesn't need oxygen because it is only when he gets into a deep sleep, does his oxygen levels begin to drop. So while napping and sleeping at night, he has his pulse ox attached to his foot, monitoring his levels. The night time picture pretty much consist of our Superman looking cozy with a oxygen line at one end of the bed and his pulse ox line at the other end of bed. In addition, he gets breathing treatments around the clock every 8 hours. All of this is only temporary as he continues to get over this horrible, nasty, virus. Are we sleeping much? Not really, between beeping of his pulse ox (because the sensor isn't getting a good reading) and having to give him his 2 am breathing treatments-we are ready for all of this to be done.
No visiting the Easter Bunny this year but we will be enjoying the time with family and watching him "search" for eggs. Alexander has a few upcoming appointments that are not respiratory or cardiology related and we pray these go well. After these appointments happen, I will update you all on what those appointments were about. Alexander keeps us on our toes all of the time but the 3 of us really need a break-especially Alexander. So keeps those positive thoughts and prayers that his appointments the next few weeks have positive outcomes and don't provide anymore set backs!
We wish you all a wonderful Easter!
