The Bumpy Road to Recovery

Our Superman! What can I say, but that he ALWAYS thinks he is in charge and is going to give every doctor and nurse here, a run for their money!

Yesterday was a VERY long day. It started off with arriving to CHLA at 8 am (as instructed) for surgery to be at 9:30. Alexander hadn't had anything to drink or eat and by 10 am, we were all still sitting in the waiting room, waiting for Alexander to be taken into surgery. It was then that we found out that there had been some incidents in the ICU that required Alexander's surgery to be pushed to 11:30. So now we had a CRANKY toddler. He fell asleep at 10:30 and was taken from us by anesthesia at 11:30 still asleep. By 4 pm we learned he was out of surgery, that all went well, and that we could see him.

I wasn't in the CTICU for 5 minutes, when Alexander oxygen levels desaturated down to the 40's, which resulted about 20 medical staff swarming into his room yelling "I need this, and let's get that". Needless to say, I once again lost it! Once he calmed down, we were told that his pacemaker wasn't working correctly and would need to be interrogated often to figure out why it wasn't working correctly.

Today, Alexander's road to recovery has continued to be bumpy. His oxygen saturations continue to go up and down, along with his blood pressure. Today has been consisted of keeping Alexander comfortable, keeping him sedated, and on a paralyses medication to keep him from moving around and to help his lungs relax. Today also consisted of having an echo-cardiogram completed and his pacemaker interrogated. The results of the pacemaker showed that his pacemaker is having to work much harder to keep up with his body, resulting in a lower battery life. A few settings were changed on his pacemaker to help increase the life of the battery, however there is a possibility that he would need a new pacemaker put in. If this happens, it could happen as early as next week. However, the pacemaker situation is something that isn't as important as the rest of his ongoing problems.

One problem being that when they did a bubble echo-cardiogram they discovered he has a few collaterals. To remind you, a collateral is another way for the blood to flow to the heart, by passing through his lungs, and are formed from high pressures in his lungs. Collaterals mean Cath Lab. Cath Lab means another procedure! If this happens, this would could be happening next week as well. Which means he will stay intubated until next week.

There are so many things that could happen next week but no one wants to schedule anything and to instead, give Alexander's body a chance to rest. We are just at 24 hours since his surgery and they want to give him the weekend to relax and let his body adjust to the new anatomy.

Wes and I want to thank all of you for showing your support and saying a prayer for our superman! He needs them more than ever now as the road to recovery is still bumpy. We are praying the weekend consists of more positive news than negative and that he begins to be weaned from his many medications he is on. I will continue to update you all as I can. <3