Life at home

We were discharged from the hospital on Friday!

Grandma and Ethan in the playroom

Finally going home!

The first couple days were a little rough at home with a lot of moaning and just sitting around not moving. However it was better than he was in the hospital, so that was a huge relief! Sunday and today Ethan showed a huge improvement! He asked to walk around the house and in the backyard a little. Yesterday he went to visit his grandparents where he took a wagon ride down the street and then rode his scooter down the driveway. Today he sat at the kitchen table and did some schoolwork and coloring. We also went to the grocery store - he rode in the stroller, but at least he was out and about a little. He complained he was super bored today just stuck at the house.

Trying bites of popcorn!

We are working on oral intake still. He is drinking throughout the day and we finally have him swallowing his pills again - even though he has to do it in rounds and rest in between. He still is barely eating real food - only small bites here and there. He definitely likes having the tube, but I am afraid he is going to be too reliant on it since he is afraid to eat because he gets sick so easily. Thankfully his nausea has been very well controlled since we got home, but he also is not pushing it at all. It helped tremendously that we were able to cut his feeds down from 320cc to 120cc per feed.

Breakfast

Callie started 8th grade today! Ethan wasn't able to start 3rd grade since he is just not physically ready yet. He did think it was great this morning when Callie had to leave and he was able to stay home with the new kittens! He will have a teacher come to the house starting tomorrow. He will receive a few hours a week of in home tutoring until he is ready to start integrating back to school. Ethan loves his teacher so he should be very happy with this plan. :)

Off to 8th grade!

He managed to do a couple pages in his school book

Ethan has to get bloodwork done this Wednesday to check his INR, potassium levels, and other labs. He also has a neurology appointment this Friday. He then has a cardiology appointment next Wednesday. He will do a Holter monitor to check how his arrhythmias have been doing now that he has been back on his meds and receiving adequate nutrition. Hopefully it will show that his heart rhythm has stabilized and he is doing much better! He also needs to see GI and psych, but I don't have the appointments scheduled for those yet.

He is still receiving cards and packages in the mail, so thank you to all who have been sending him things! We also want to thank everyone for all of the prayers and support we have received! We learned a special Mass was said for Ethan today, so thank you Mary and Emil! We know that many churches and people are praying hard for Ethan's recovery and we are so grateful! Please continue to pray for him. Please keep praying that his pain eases, he is able to tolerate food, and that he starts to sleep at night! Hospital life has completely messed up his sleep schedule and he wakes constantly throughout the night. I will update again soon with how he is progressing.