After carefully reviewing Katy’s test results, the surgeon has decided not to remove her gall bladder after all. He said that it will probably recover once some of the other issues are resolved, and that the possible benefits of removing it are not high enough to justify the risks involved. So we are focusing on those other issues.
The UVA staff is making good progress on the steep HPS learning curve. One of the doctors at NIH told me today that there are probably only about 1500 confirmed HPS diagnoses in the entire world, so every time we see a new doctor he (or she) has to learn about HPS before understanding Katy’s needs. We are once again moving forward albeit slowly. Katy no longer requires full-time oxygen, and she now has a pain medication pump that lets her give herself an additional boost of pain med for breakthrough pain. No more running for the nursing staff and hoping enough time has elapsed since the last injection so that the orders will allow for another one. We are also about to try a new pain medication called lyrica that works on the nerve endings, so please pray that it will be effective and that it will not have adverse side effects. It takes about a week before the effects are known, so we will have to wait and see. Meanwhile we are waiting for the other medications to reduce the imflammation so she can start eating again.
Speaking of waiting, that’s what a lot of this struggle is about. Improvements happen so slowly, and we want results now - especially when we watch Katy struggle. We want to make things happen, and we don’t understand why it takes so long to see results. This is the time when we need to “Trust in the Lord with all your heart, and lean not on your own understanding.” (Proverbs 3:5). When we lean on our own understanding, we just get frustrated. When we trust in the Lord we can have peace, knowing that He is in control of even this.