Surgery Update

Overall this has been a pretty quiet week. On Wednesday we met with our surgeon to discuss our ongoing problems with Alex's central line. After quite a bit of discussion we decided that at the end of the day we need a line that is fully functioning. I appreciate our hospital and our surgeon for giving Alex a voice in all discussions and weighing his opinion as the most important.  Surgery was scheduled for Friday.

Alex continues to make huge strides in his anxiety and his ability to handle these types of events. He used to panic and struggle to sleep for days leading up. At this point he handles himself and is able to function despite the anxiety. He has always been able to advocate for himself. He first started speaking up at just 4 years old! But as he gets older he becomes more articulate and better able to drive his point home. When we arrived at the hospital we realized we were assigned an anesthesiologist whose name we didn't recognize. Alex is extremely hard for an anesthesiologist because he has a LONG list of medications he is allergic to or cannot have due to his mitochondrial disease. We have several anesthesiologists who have worked hard to come up with an amazing plan that works really well for Alex. When we have a new anesthesiologist all we ask is that they follow this plan that has been proven to be the safest for Alex. When the anesthesiologist came in, it became clear we were going to have issues. He questioned every medication I said Alex could not have and was very resistant to any discussion. When he stepped out we asked the nurse if either of our regular anesthesiologists were working. They paged one and him and the new anesthesiologist came in. "Our" anesthesiologist said he could do it, but that he trusted the new guy and preceded to explain why we do things the way we do verifying the info I had already tried to convey. As this conversation was taking place, Alex piped up and said, "I would be much more comfortable if you would just do my anesthesia". The confidence and composure it took for Alex to say that right in front of the other anesthesiologist amazes me. And so the surgery and anesthesia went off without a hitch. By the time I got back to recovery Alex was awake and talking.

Another first as Zoey came to surgery with us for the first time. She was excellent both in pre-op and recovery and was not happy when they took her boy away.

Waiting

Pre-op

How much longer?

They need bigger couches!

Home and asleep!

Alex continues to do well. He is a bit sore and has been pretty nauseous, but overall is doing well. We will have a quiet few days.

We have such an amazing village surrounding us, but I cannot say enough about our beloved Mrs. Mitchell. She is always the first to offer to care for my sweet girl and is always Maddy's first choice. They love each other and their time together so much. Yesterday included pancakes, painting nails, hide and seek, playing with Mrs. Mitchell's cat and dogs and jumping on the bed. We are so grateful for the way she loves our girl!

Thank you to everyone who prayed for us and continues to pray for us!
Ali