Surgery and Hospital Update

Ok, so I'm going to try to make this one quick but get in all the important details. We are home! Thank you Jesus!! Lydon is napping at the moment which is a lot of what he's been doing since we got home. Aidan is playing with birthday toys (don't 'cha just love it when they get new toys and actually play with them?!). Hollie has gone running...my little health concious teenager! And Jono is watching the UT game with Dad. So, I have a quiet moment to update. I am suppose to be here in our home office working on real work that I have brought home from my job but I just cant focus. I've never really had trouble focusing. I've always been pretty self disciplined (except with food and excercise! ;0))but right now, I am having trouble getting it together. I do really good during all of the procedures and most of our entire in patient stay but when I get home and feel the exhaustion and I go over all of the events of the last several days, that is when my heart aches and nerves seem fried! So, as guilty as I feel about not working on "work work" right now, I'm gonna try to get this post posted and hope I feel better.
So, Wednesday morning, as planned we headed to the outpatient surgery dept. We got up at 4:30 (yuck!) and checked in at 6. Thank you Paw Paw for coming and help get Mr. Aidan to school so that Daddy could go with us. Let me back up just a little. On Tuesday, I called the anesthesia department. I was so worried and so tired of going through the same routine that we go through each time Lydon has anesthesia. I talked to one of the wonderful anesthesiologist there and explained all of Lydons history to her. She said she would pull his chart and look it over and for me not to worry. I felt some comfort in this but didnt really have a lot of expectations. Once we were pulled back into pre-op, the same sweet lady came in to talk to us. She asked us some more details about exactly what happens to Lydon. We told her how he comes in to PACU breathing ok for a little bit but then ends up in distress and becomes acidotic. She said that she saw that from the record she pulled from our last procedure in March but she felt that our biggest problem then was the fact that they gave him Propafol and didnt follow any Mito precautions. Finally we all agree on something! She assured us that wasn't going to happen this time and that she was going to do the safest thing possible. She asked us if we had ever had a non eventful experience and we said no. So she pulled all of his anesthesia records at that point and told us the more she read the more concerned she got.

So, she said we needed a safer more controlled plan than what has gone on in the past. She said she would take him back to the OR and see how he did and go from there but she prepared us to end up in ICU. So, consents were signed, everybody bunnied up and back to the OR we went.

After the procedure ( which ended up being almost an hour late because of all of the discussion of what we should do) she came out and talked to us again. She explained that she gassed Lydon down with one of the "mito safe" gases and got a couple of IV's started. She then switched him over to the IV meds and got a quick tube of blood to check his gases. He was already mildly acidotic at that point. So that sealed the deal and bought him an overnight stay in the PICU. She told us her opinion of what is happening and we all agree that Lydon does ok for a few minutes post op but after that, he just doesnt metabolically have the ATP reserves available to keep up with what he needs to recover from the anesthesia and breathe on his own. He is energy deficient, metabolically acidotic and has poor muscle tone with his narrowed airway as a result of all of that. So, as soon as Dr. R- GI doc was done, they went up to the PICU. By that time, he was even more acidotic so they turned up his IV fluids and remedicated him and kept him intubated for a couple more hours. He did pretty good until they allowed us to come in the room and when he heard our voices, he started waking up. They really werent ready for him to wake up and had planned to keep him intubated even longer and possibly wean him off to CPAP. CPAP is continuous positive airway pressure that basically blows air forcefully enough to keep your airway open. Apparently, that was not what Lydon had planned! In the midst of them trying to medicate again and keep the tube stabilized, he reached up and pulled it out! This sent the entire team rushing around frantic because as strong physically as he is and as strong willed as he is, he just wasnt ready respiratory wise and wasnt really where they wanted him metabolically. But, like we told them, Lydon plays a different ball game with his own set of rules! ;)

They were very quick and got things stabilized within about an hour. During that hour, both of the IV's they had started in surgery blew. They called the pedi transport team who is the best of best and frequently starts IV on teeny tiny infants and frequently are in stressful situations out in the field. It took seven sticks to get an IV in and even then, we couldn't pull blood from it. That was a stressful hour!! So, all in all it was a rough stay. We pushed lots of fluid through him and a full 24+ hours of steroids. They kept him calm and out of pain. When we got home he was SO very exhausted!! He has layed around and slept a lot! Yesterday, he did start eating some. Thank you Poppy for the wonderful chicken spaghetti dinner. It was awesome!! As much as we are drained from the whole experience, we feel relieved because finally, FINALLY
we feel like we have a team who is looking at Lydon and recognizing his issues and doing their best to keep him safe, protected and well taken care of. Hopefully, this whole event changed the course for us and we will not have to fight for him anesthesia wise again. God is so good!