Tuesday, May 19, 2015

Still Going Strong!!

Thankfully, we are still bleed free since Thursday at 2:30AM!! We are so thankful that this is the case!! We now are getting back to his CF tune-up, and going to see what happens regarding the bleeding. They can't tell us why it stopped on its own, and they can't tell us if it maybe just healed on its own. They also can't make a guess as to when/if the bleeding will start again....5 days or 5 years. So here our current plan of action:

- Ease back into treatments - Today Ronnie will start his vest, on a very light setting. In a couple days, he will start inhaled antibiotics (which antibiotic is still TBD), and then Pulmozyme (that will be last added back since literature does note some hemoptysis with it).
- Hypertension medication - He doesn't have hypertension, but some other docs they consulted said that they have found it can help with the bleeding by lowering the heart rate. So we are giving it a try.
- Switch from Tranexamic Acid to Amicar Syrup - Tranexamic Acid helps clot your blood, so he's been on it. But it's not a great longterm option. So they are going to switch him from that to Amicar Syrup, which apparently works by a similar mechanism, but isn't as potent.
- 2 weeks of IV antibiotics - One of the teams Ronnie's team consulted with said this is their standard treatment post-hemoptysis. So they are going with that.
- Hemoptysis Guru review scans - We are having a Dr. from the University of Washington review Ronnie's IR scans, as well as their IR team, to see if there's anything that was missed or something they think they could do, proactively. This was the team recommended to us by our CF team after they asked around and researched to find the best to deal with this specific situation.

Right now we are working on managing lung pain, building strength, and working through feeling like a ticking time bomb. We are all doing well. Just taking each day as it comes! We are eager to get back to normal tune-up mode and then normal life mode. We inch closer every day, so we are thankful for progress. Please join us in praying for a continued lack of bleeding, strength that grows exponentially each day, increased appetite, and daily progress!