It's been 2 weeks in the CHLA Bubble

It's been 2 weeks since Alexander had his surgery.  I've been in the CHLA bubble for 14 days, where the outside doesn't stop but your days are consumed with medical reports, alarms beeping, keeping a sick toddler happy, talking with doctors and nurses, making the hospital room your new home, and trying to keep your sanity.

In the last blog post, a plan had been made. The plan is still in effect but isn't working as we had hoped. Alexander was put on a steroid on Sunday night to help with inflammation of his pericardium (the sac surrounding his heart). It's a slight stretch to think he may have some inflammation, but it may be the reason he can't keep his O2 levels up high enough when being active (the steroid will help his heart to relax completely (another issue that is going on). So we said okay. Monday morning we had progress! He was walking around the room and only dropping as low as 73! Much better than 53!!  Monday afternoon he was dropping a little lower (68) but as soon as he stopped walking, his oxygen levels jumped up to 80. So we began to get hopeful but also question: Was it the steroid that was helping? Or the fact that Alexander just needed time? Then that evening, we were told that Alexander was on the schedule for his Fontan next THURSDAY! I was freaking out because there is talk of it being a risky procedure for him because he has such high pressures in his lungs. His cardiologist DOESN"T want him to have the Fontan either. So the surgery is still scheduled but meeting to discuss Alexander will be happening all week.

Which brings me to yesterday- a not so great day. Alexander woke up happy, but by 9:30 am he was irritable, extremely pale, and falling asleep on me. When he woke up, he got sick and proceeded to get sick two more times within an hour. After each episode of getting sick, his body went limp, he stayed extremely pale and his blood pressure was getting lower. You can imagine at this point many many doctors were in and out trying to figure out if it was a drug reaction, a seizure, or a heart issue.  He had an echocardiogram done, a chest x-ray, and a CT scan of his head. All have comes back fine and Alexander was readmitted to the CTICU as of 2 pm yesterday. The consensus now is that he was having seizures that were brought on by the steroid. The steroid that was possibly helping his O2 levels, has now been stopped.

Today we will find out what the next step is. What is the plan? We do know that home is NOT anytime soon and we are trying to get into the Ronald McDonald House so that Wes and I can at least take turns getting a decent night sleep in a bed outside of the bubble.

Alexander needs all of the positive thoughts, prayers, and good vibes he can get. Each day is a question mark for us on what is going to happen and our poor Superman just doesn't understand why he can't go outside and play, why he has to be constantly poked at and touched. :(  

We are praying for good news soon. Thank you for your continued prayers!  <3