Day 5 post op

We had a rough night last night. We unfortunately dealt with a doctor who did not listen to me and the other providers. She wanted Ethan to be back on CPAP overnight, but we all expressed our disagreement and let her know he would not tolerate it at all. Our past experiences with him on it have been completely distressing for him leading to lots of sedation. Well she decided that we would wait until he was nice and calm before putting him on CPAP, thinking that then he would be good and tolerate it well. That did not happen. At 1am when he was sleeping peacefully on 8L of high flow oxygen and sats at 97% she decided to attempt CPAP. He absolutely freaked out as expected. We had four of us holding him down and forcing the mask on his face (the doc who decided on this left the room after a couple minutes of trying to pin him down. Go figure. She made us keep it on for 30 minutes to see if he would calm down and let us keep it on him. Since he was so upset and fighting so much (I'm talking thrashing violently, causing lots of pain from trying to move around so much, etc) he was given multiple sedating medications. Unfortunately he fought right though the sedation and the entire attempt was unsuccessful (big surprise). He was having some heart rhythm issues because of the stress and ended up being over-sedated which caused his blood pressure to plummet. He actually dropped to 55/25. We had to spend the next couple of hours stabilizing him and pumping meds and supplements in him to counteract all the effects of the CPAP trial. He also ended up having to increase his high pressure oxygen flow from 8L to 16L, which he is still on at this point. I was extremely upset over the fact that the doctor didn't listen and put him through this huge stress when we all knew that it would do way more harm than good. It definitely set him back in today's progress. He wasn't able to move to the step down unit because of what happened. He also was fluid positive since we had so many meds pumped into him, so therefore he was on fluid restriction (had to severely limit what he could drink during the day). He hates that! Needless to say, not much sleep was had last night! I am hoping for a MUCH more peaceful and sleep-filled night tonight!

Today Ethan has been pretty good. He is having a lot of pain with gas, and it is probably TMI but he has not had a bowel movement since before surgery. He is in a lot of pain. We have given him two different laxatives as well as prune juice and gas drops to hopefully get things moving in him! He is going to feel SO much better once he goes to the bathroom, so please keep that in your prayers!

Ethan has struggled quite a bit emotionally again today. He has been randomly in tears because he wants to go home so badly. He is very frustrated and upset and is saying some things that are showing his emotional stress. However, a mail shipment arrived today and his face just lit up when he saw his cards and gifts delivered! It made him so happy to look through all the cards, letters, a new Lego set, and giant stuffed rabbit! Thank you all so much for sending those to him - he really needed that boost so much! And to top it off he had visitors who brought in police motorcycles to play with which he loves! :)

Ethan did have some good progress today though! We were able to remove his final chest tube (YAY!), remove another blown IV from his leg, and place a new IV in his arm. We also have been able to slowly wean his high flow oxygen support from 100% to 50% oxygen. He is still at 16L of it, but hopefully we will be able to start to wean the flow to try and get back on regular oxygen. That will allow him to walk farther than 2 feet away from his bed which he desperately needs to do. His legs are so weak that they are like jelly when he tries to stand. He hasn't used them at all in 6 days so his muscles are very weak and he is exhausted with the slightest exertion. Basically he is just exhausted all day long, but today was a bit of an improvement over yesterday so hopefully we will start to see more and more energy from him. He was able to sit in a chair three times today so that is really good for him! We had hoped to walk today, but now that is definitely the plan tomorrow! He also ate some food today - about six big bites of macaroni and cheese and half a cup of diced peaches. Hopefully tomorrow that will continue to improve.

We also met with wound care today. They looked at the pressure ulcer on his tailbone and applied new dressings to it. He also received a big pad to sit on. They will measure it and cut out a hole where his wound is so he can sit without pain on it and allow it to heal.

Plans for tomorrow are to get up and moving around, get back on regular oxygen cannula, POOP, and lots more coughing and respiratory therapy to try and open up his collapsed lung. We would love to move to the step down unit so he can have some freedom and more space (hopefully without a roommate). Thank you so much for the prayers and support - and please keep them coming! Hopefully tonight will be great and tomorrow make a lot of wonderful progress!

Awww...Callie scratching Ethan's legs :)