Day 11 Post Op

This morning started off like all the rest. Ethan was grumpy and in pain. It took a bit more effort to convince him to get out of bed today, but thankfully he did get up to go for a wheelchair ride.

Someone came and talked to us this morning about our plans to leave today. She let us know that because it was the weekend, the home health center would not be able to deliver our feeding pump. Because of that she said we had to stay another day. Um...I said no. We proved that Ethan could tolerate the gravity feed last night and we are fine doing that until Monday when the pump arrives. Thankfully when rounds happened, the doctors all agreed that we would be able to handle Ethan's care. Dr. Najm (our surgeon) also told me that he wants to do another 3D model of Ethan's heart. He would love to have before and after models and I think that is amazing! I would love to see the difference between the two - and to see how his heart really looks now! I definitely hope that we are able to have this happen!

Transport came and took us down to the basement for the final chest x-ray. Ethan did well and the scan showed that his lung looked better than it did on Friday! We are making a little bit of progress each time, so hopefully these therapies will help open everything up soon! His lower lobe is going to be the big test - the upper responds better but the lower lobe has been very problematic in the past. Only time will tell with this!

We weaned his oxygen down to only 1L and he is still doing well with it! He is mid to upper 80s, and we expect it to increase once his lung is healthy. :) It is beyond amazing seeing his beautiful pink lips, pink fingers and toes, and no blue nose/dark circles around his eyes!

We went outside on one of our walks today and sat in the sunshine. The weather was beautiful and Ethan was able to watch a police car blocking traffic from an accident. He was happy about that! Unfortunately a woman came out who was cursing up a storm and lit up a cigarette while sitting in our little seating area, so Ethan and I left to go back to his room. :(

He enjoyed getting some fresh air

Watching the cop car

Ethan had his stitches removed from his chest tubes and thankfully he handled that pretty well. We also spent time packing up the room because...WE WERE DISCHARGED TODAY!!! John and Callie came to pick us up this afternoon. He had to take a cart to take our ridiculous amount of bags to the truck!

Seriously first real smile all day! He was so happy!

So happy to get home! And thanks again to Mended Little Hearts - the seatbelt pillow is amazing to keep his chest wounds safe and comfy!

Needless to say we were so thrilled to get home! Ethan was/is still in pain and complaining, but hopefully he will get better faster at home. He said he was starving when he got home and ended up eating two bowls of chips and all the toppings off a piece of meat lovers pizza (I haven't had a chance to go grocery shopping yet!) That is probably more than he has eaten by mouth all week! We are continuing with the new med routine, gravity feeds until our pump arrives tomorrow, daily weight checks to ensure he continues gaining, and hopefully getting him stronger so he can be moving around more. He definitely doesn't have the option to refuse walks and just sit in a wheelchair here at home! :) I also met with nutrition who provided some high calorie recipes to try and put some weight back on Ethan.

Our new meds with the exception of four that we are still waiting on from the pharmacy

Please pray that Ethan's pain is controlled well and he starts being able to move around more easily. Also please pray that these tube feedings help him get back to his pre-surgery weight and gain back strength/energy. We have a lot of things going on this week like school open houses, I need to meet with Ethan's school and new teacher to discuss his transition to school, getting back to therapy appointments, and cardiology appointment on Wednesday. Ethan has had an extremely difficult time emotionally over this hospitalization, so I will be calling his psychologist to set up an appointment quickly. Hopefully we will get good news and have a wonderful healthy week! Ethan wants to go grocery shopping with me (he basically just doesn't want me to leave his side) so that should be interesting. Thank you so much for all the prayers and please keep them up! We are so grateful to be home and doing well, but we definitely have a lot of progress that needs to be made still!