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! 

heart walk and some other stuff

Saturday we had the 2012 Congenital Heart Walk! It was a great time and thank you to all who supported us - by either coming to walk with us and/or donating money! We were able to donate a whopping $1015 to fund research to find a cure for congenital heart defects!! The weather held out thankfully and we all really enjoyed ourselves.

                                                        Ethan before the walk started

                                                       Team Ethan's Entourage

                                               John and Ethan showing off their shirt backs

                                                       Elmo and Dora came to visit

       Don't know who this was - Scooby? But Ethan loves dogs anyway :) Apparently John does too...

We had a great time and saw a lot of great friends! We were able to meet up with our favorite nurses, NPs, doctors, and surgeon! We also were able to meet up with some of our great heart buddies, their families, and even met some new ones! It was a great place to connect with new moms and heart kids and invite them to join our Mended Little Hearts (our heart support group) and hopefully connect more with them in the future! :) I wish we were able to spend more time there and actually take pictures with all these people, but unfortunately we had to rush out to Callie's soccer game. Oh well, next year we'll make sure to stay for the entire time!

Later that night we went to haunted houses. We took Callie to her very first ones! I absolutely thought she'd be terrified and not sleep, but amazingly she did great! She wasn't scared and had no problems afterwards! :) Yay! We'll be hitting more this month!

                                                                Callie

                                         Callie and John before the Crazy Clown 3D house

Last week Ethan had a cardiology appointment, echo, blood draws, and supposedly a meeting with wound care. We had blood work in the middle of the week and it was VERY rough. They had to poke around in his arm 7 times to get the blood to come out! He never cries (he just whines and gets anxious) during his blood work anymore, but this time he was in tears and crying begging them to stop hurting him. I was almost in tears trying to convince him that it's okay and it's almost over. :'( That lab work came back showing that his INR (the thinness of his blood) was way too high - I think it was 9 something. His normal range was 3.0 to 3.5. The docs called and I let them know we were heading in anyway due to his appointments. They said "Don't get in a car accident, but get down here" LOL. We showed up and did another round of blood work (this one went much better!). The results for this test showed his INR at only 4.0! Big relief. That's still high, but much better than 9! We held his coumadin for the weekend and did another check on Sunday. That showed 1.2 (now too low) so we restarted the coumadin and will check at the end of the week. :/ Hopefully this gets under control and we are in a comfortable range quickly!

                           The lab gave Ethan lots of goodies after having such a rough blood draw

Back to the cardiology appointment. His oxygen saturations were still normal for him. He was at 68% in the office. We were hoping for better after his last cath, but it seems to be still around where we were before. Maybe it can improve as he continues to heal though.

His echo looked great - the artery is still open and clear with plenty of bloodflow! :) Dr. Golden (our cath doc) brought up some things he has been thinking about since the cath. He thinks that by putting in a covered stent (like the one that we used in this last cath) down in the pulmonary artery that keeps clotting off, the artery won't be able to close in on itself anymore! He thinks that if it works as he plans this could potentially significantly cut back on the number of caths that we need! We can really push the time between caths out - which would be nice since we're doing every couple months right now! He needs to discuss it with Dr. Zahka (our other cardiologist) before planning much more, but he said "Don't kill me, but I'd like to do this in the next couple months." *gulp* Really?!

                                             Actually cheerful for his echo! :)

                               Couldn't pry his eyes off the TV long enough to take a picture :)

And lastly we addressed the burns. Wound care didn't show up, but Dr. Golden and Dr. Stewart (our surgeon) checked out his butt burn to see how it was healing. Dr. G mentioned that if it doesn't start healing up better we should see dermatology and plastic surgery to get it taken care of. He said he has some dermatologists who owe him so we can get in right away. I also have a dermatologist we can get into right away, so we'll see how things go. :) Right mom? His butt still looks pretty much the same (maybe a little better) but is starting to get less tender. It still hurts him when touched but it's not nearly as bad as before! We also got his hair cut. When we did that we found that the clump of blood that was in his hair at the hospital (the one we thought was dried blood from his bleeding incident) was really a burn. :( Yes another one. He now has a bald patch on the back of his head. We're going to get this checked out and hopefully we can get hair to grow back there! His ear burn on the other hand has healed pretty well. :) Thankfully that doesn't seem to have scarred and doesn't hurt him anymore.

                                                             Bald patch from the side

                                                    Bald patch from the back

Lastly, the kids started physical therapy and are doing well. Hopefully this can get Ethan up to where he should be and he loves it so far! :) And the therapists confirmed that he is a lefty kicker, batter, and golfer but a mixed thrower and a righty writer! He just can't make up his mind LOL!

I'll keep you all posted when I get more info on the cath and his next INR results. Please keep us in your prayers for continued healing and everything! We have a pulmonology appointment tomorrow, so hopefully that will go well!