Pulmonology appt

Last week was Ethan's pulmonology appointment. It went really well! We started off the appointment doing spirometry tests. These showed how well he was breathing, how much air he can get in and out of his lungs, and tests his lung power. Last time he did terribly for these tests. His percentages were REALLY low and wasn't able to complete a single one even on easy settings. This time however...he totally did amazing! His percentages were so much higher (70%-80% as opposed to 30s) and he was able to complete each test successfully! I was so proud!

Ethan did really well until he got his Albuterol treatment. We had stopped doing these and switched to Xopenex because it makes him absolutely crazy! Well they gave him some and sure enough his behavior was TERRIBLE for the rest of the appointment! Grrrr. At least we were able to do all the tests and get a good report from the doctor anyway. His lungs are sounding MUCH better than before! He needs to continue treatments of Xopenex, his salt water solution, and Tobramycin to continue to keep his lungs healthy. His lungs sound great with only a little crackling. This is a huge improvement to where they were just a month ago! :) Even with all this improvement his oxygen saturations are still only in the 60s. He is mostly in the upper 60s since the cath, but we were definitely hoping for better than that.

Other than that things are going really well. Ethan is doing well in school and improving with his speech therapy. His physical therapy is also going well. He met with them last week for the first time and they said he definitely needs it! We'll go once a week along with Callie and hopefully improve with his motor skills. I'm also considering signing up for an additional speech therapy for him. His apraxia is still pretty rough and unless you know him it's still pretty difficult to understand him when he's talking to you. His words get all jumbled up and in the wrong order when he starts talking. Last year in school he received 2 hours of speech whereas this year he's only getting 1/2 hour a week. I'm still just considering this since I'm not sure how much time we have in our schedules, but we'll see. :)

Ethan LOVES getting packages in the mail - but they always end up being either breathing treatments or Lovenox injections LOL. At least he can enjoy the box for them! :)

 

And apparently you're never too old for the kid carts at Giant Eagle :)

 

 

Ethan's INR was up to 3.0 at today's blood test. The doctors just emailed back adn our new goal is 2-2.5. Now we will decrease his dose to 4.5 mg daily and recheck his blood in a week. :)

 

Thank you for all the prayers, cards, and support we've received once again! You all are so amazing! Please continue to pray for us that Ethan continues to heal and improve. Also please throw in a little prayer for me. I had my wisdom tooth pulled today and so far I'm doing well. I just pray that the pain is kept at a minimum and it heals quickly!

 

Also for those who have not received their heart shirts yet, they are coming soon! I'm sorry for the delay!

 

And Ethan will see dermatology soon for his burns. His head seems to have healed up well but I'm not sure if his hair will regrow. Also his butt is slightly improving but is still tender. Please continue to pray that that heals up quickly. Hopefully the wound care/dermatology can get the scarring to be minimal and the pain to go away! I'll keep you all posted!