Perseverance

Tina here again...

I had a good day with Ethan yesterday. I was able to leave Kevin at home so Ethan and I could have some much needed one on one time. He is currently in isolation due to a bacterial infection in his bowels. He has been on antibiotics and is doing well. He was smiling and laughing with me when I got there, but the little guy was very tired. He was taken off of his narcotics that morning so his withdrawal symptoms had not started yet. He was having some trouble breathing with his shorter trach and after doing a quick scope at his bedside it was discovered that his diverticulum (out pouching) was flopping into his trach and cutting off his airway. They will do another bronchoscopy on Friday and decide if they should put in the original trach or if they need to custom order one - knowing the little man, we will likely have to get a custom one made, he never takes the easy way out!).

I had my meeting with the team of people treating him and it went really well. They are now looking towards discharge to the hospital in Manchester as early as Monday! Though, I am sure that it will not be that quick. Ethan always has a trick up his sleeve and I am not expecting anything less. The only requirement that we have to meet for Ethan to be able to go to Manchester and not to another hospital in Boston is that he will need to be off the ventilator support. We are very confident that he can do this as he has only been on the pressure support to try and help him with growth. As long as he will not need to go home on a vent, The Elliot can discharge him home!

In the meeting we talked about further decanulation (removing the trach) and it is not something that we will be trying any time soon. It will be a long slow process and we will make sure that he is good and ready before we take it out. Both Ryan and I have had a long time to contemplate bringing him home with the trach. While it is intimidating and will definitely make our days a bit more complicated, we are so excited to get him home! We have had a lot of training and will be getting more when he is transferred and I am confident that we will be able to care for Ethan very well at home. The primary doctor that will be working with us in regards to Ethan's tracheostomy has told us that if he is not ready to have it out by the end of the summer, we will likely wait until next spring as they do not like removing such a stable airway during cold and flu season. We agree that keeping Ethan safe is the best option. After seeing him on the NT Tube again really showed us how important the trach is and how it really is helping him so much. We are not sure how long Ethan will need to have the tracheostomy in, but we are in it for the long haul!

Kevin has been doing well and is sitting up very well now. He has 4 teeth that have come in and at least three more on their way! He is getting around by rolling and scooting on his back. He has been trying all kinds of foods and is loving most of them - not so much the asparagus or cauliflower!

Ryan is doing well and is on the road most week days. He was able to spend some time with Ethan after work today and still got home to grill some steaks for dinner! He truly is an amazing papa! He has been so strong and has helped us all deal with some of the most difficult times. He has been there for me more than I could ever imagine and I am so lucky to have him!

We want to thank each and every one of you for all your love and support. This has been such a roller-coaster for us and just when we think we are starting to leave the worst behind, something seems to remind us how chronic Ethan is. That being said, Ethan shows us each day how strong and resilient he is. He always has such big smiles no matter what he wakes up from. We are so blessed to have two wonderful and beautiful boys in our lives!

Ryan's mom will be coming out to visit next weekend and my mom will be coming out in April as will my sister Liz (she will be here for Easter). We are looking forward to all our guests!!!