Monday:
Monday we had Ethan's physical therapy. We brought along his oxygen tank since we've really been struggling with his oxygen saturations these past couple weeks. During his physical therapy from the Thursday before he kept dropping into the 30s after each activity. We didn't get much work accomplished since we kept having to stop and rest so much! Needless to say, once I brought the tank along we didn't even need it! His sats didn't go out of the 50s throughout his session so that was much better than he's been! He was able to do his exercises and had a lot of fun - they even let him jump on the trampoline!
We received a call yesterday from his oxygen supplier and they need to do their annual assessment to make sure he still needs oxygen. I don't think we'll have a problem keeping his at home supply since he never makes it out of the 60s for his sats! They'll check his numbers at rest and doing various activities though just to see if he still qualifies. That'll happen later this month.
Tuesday:
Tuesday we headed downtown to see pulmonology. I requested right off the bat that Ethan doesn't get the Albuterol. The past three appointments he has taken this medicine during his spirometry testing. With this med he gets SO out of control, naughty, and hyper. We had to discontinue it at home a long time ago and switch to Xopenex with a much calmer boy. His levels looked pretty good - basically the same as last time. The doctor was really expecting better though. He figured Ethan's lungs would be clear by now, but he's still really junky and wheezing constantly. The only good thing is there are no crackles being heard in his lungs anymore!
We went over the doc's desire to have Ethan take some antibiotics to try and clear out his lungs, but upon looking all of them up they all interact somehow with one or more of his medications. It wasn't worth the risk to mess with his other drugs, so we'll just continue to do the Xopenex treatments, HyperSal, and vest treatments. He also tried to figure out some preventative measures as well. Dr. Royce (pulmonologist) mentioned that normally in a case with chronic bronchiectesis (SP) like Ethan has, they would remove the damaged lung lobe. This would be his right lower lobe that is almost chronically collapsed. However, he also said that in Ethan's case we'll not be able to do this after all. Since Ethan's lungs are so damaged, the remaining lung sections wouldn't be able to compensate for the missing lobe like a healthy child. He needs as much lung as possible, even if it is damaged. We return in 3 months to see if any progress has been made. The doc also requested that we get a culture from his lungs during his next heart cath. They'll run this culture to see if there's any pneumonia or problem that we're not catching right now.
Thursday:
Thursday we had cardiology. The echo looked decent. We weren't able to see for sure if his collateral artery (the one that kept clotting) is open or clotting again. Dr. Zahka (cardiologist) discussed with me our feelings that this past cath didn't help Ethan out. We now have to figure out the next step since obviously something needs to happen to improve his sats and make him feel a bit better. He is discussing Friday morning options with Dr. Golden (our cath doc). They will also meet with the entire surgical/cardiology committee to discuss his case. They have four options right now on the table. One is fixing his lungs (don't know how to do this though). Two is doing something with his pulmonary veins. Three is the open heart surgery to upsize his conduit (this is the one that we planned on doing in the summer but cancelled at the last minute). Fourth is another cath to open stents and place another covered stent in his last pulmonary collateral artery.
Dr. Z thinks it'll probably be the surgery that we planned for last summer, but we don't know for sure yet. The entire team has to meet so no one is able to change the plans last minute again. They need a unanimous decision for this to happen, so hopefully they can come up with something great and all agree on it! Maybe some new brilliant idea will come out in the meeting as well?! He said we'll know the answer and plans by next Friday. That'll give them enough time to meet and discuss everything.
Thursday was also John's 33rd birthday! We were able to celebrate with Hibachi dinner and a homemade german chocolate cake. We also went through 25 german chocolate cupcakes in 2 days! That man sure loves the stuff! :)
Happy birthday, John!!
Ethan was really excited about his Hibachi!
John, his brothers, and Callie waiting for our dinner :)
Please continue to keep us in your prayers - and please pray that the docs come up with a great plan for our next step. I will let you all know once they tell me what we're doing - it should be next week.
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