Talk about a punch in the gut! Just when we thought things were moving in the right direction again, we were hit with another whammy today. Yesterday went so well, and things seemed to be turning the corner. However, late last night Alexandra began getting really fussy again. Neither one of us got much sleep last night, so she woke up this morning very irritable. Unfortunately, lack of sleep was not the only reason for her crankiness.
When her cardiologist came in this morning, we both noticed that she seemed to be having a harder time breathing. They had already taken a chest x-ray, so she went to review it. From the x-ray, they couldn’t tell if there was more fluid or if part of the left lung had collapsed. While either option did not sound good to me, they didn’t seem terribly concerned, and we proceeded to move over to the CCU. We got a great room, which we settled ourselves into quickly.
As the day progressed, her breathing became more labored, her heart rate was going up and her oxygen levels were going down. They then decided to do an echo, which showed that she did, in fact, have a lot more fluid in her left lung as well as fluid around her heart. After a long consultation among all of her doctors with her surgeon, it was determined that she needed to have a tube inserted to drain off the fluid. It was very frustrating, as during all the time it took for them to consult, she couldn’t eat or drink anything because they thought they may need to do it tonight. However, they decided they would rather have it scheduled first thing tomorrow morning, so she ended up being able to have clear liquids until just a little while ago and a few crackers.
Earlier, when we offered Alexandra absolutely everything to eat, she wanted nothing. Then, when we couldn’t give her anything, she wanted absolutely everything. It is so hard denying your child food and water even when you know it is in their best interest!
Tonight, after a very messy diaper, her demeanor changed greatly from earlier in the day. We got a number of smiles and even a couple of giggles. It was wonderful! We did another wagon ride, which she enjoyed very much. Later, she wanted to go to the playroom and “ride a bike.” Keep in mind, she has never been on any sort of bike before. However, it was what she wanted, so since she couldn’t go to the playroom, I went in search of any riding toy I could find to bring back to her. I did end up finding a small bike, and her Dad held her on it while he pushed her around for a few minutes. Then, she was ready to get back in bed.
At least the evening ended on a positive note. I’m sure we won’t be able to sleep tonight, but I have to believe with all my heart that everything is going to turn out just fine!