This week has had many ups and down. There have been a few good things we are so grateful for. There were a few days with long flares that didn’t respond well to the usual treatments and that has us kinda rattled.
Her most recent port accessing went great and we are happy to report all of the port issues are gone. It’s a huge answer to prayer, we need this thing to keep doing its job and keep her out of the hospital. It had slowed over the course of a few weeks, preventing her from some benefits and causing concern it could be failing (requiring surgery). Each use is a reminder of God’s goodness and provision for her in these uncertain times.
It’s hard to tell if she has been tolerating her new compounded medication. The first few days were great. Her pain was entirely managed, and she slept much better. Then things took another turn. She was very nauseous, and her symptoms escalated for about 4 days. It’s hard to know if this has anything to do with the meds or is because of something else. Because of the new med she can no longer take any heavy pain meds and one night was hell. She kept reaching a point of being nonverbal from the pain. It was really tough feeling like there was nothing we could do to help her. On schedule she is now on a double dose of that med and seems to be tolerating it fine and that is reassuring.
Collaborating doctors, hope for other medications, further insurance issues and concerns about adding to her immunodeficiency during this time of COVID-19 all helped make the decision to not start chemo. The current plan is to reassess in June. Of course the hope is that she will not need it then either but we need time to see how these other treatments play out.
Spring allergy season has always been hard on her. It starts as soon as the snow starts melting. So far it has seemed like it wasn’t any worse than other years but now we aren’t sure if it is to blame for her misery the last few days. It’s possible it is the cause for the daily headaches.
She’s been having elevated temperatures that are not quite a fever on and off for a few months. It’s always something we watch closely. We’ve been told it is not uncommon in patients with her conditions. This is more stressful right now with COVID-19. We are confident we are doing all we can to protect her but it’s still tough. It was hard to see the elevated temps and a flurry of symptoms, but she’s had two better days now and her temps are back to normal and we are all breathing a little easier.
We were so relieved that MN went under an order to stay home starting on Friday. Even if we can successfully keep Britta and her caretakers from catching COVID-19 it is vital to “flatten the curve” and keep hospitals running. We are so grateful that she hasn’t been to the hospital lately but the countless trips in the last year are heavy on our hearts and the anxiety is hard to manage sometimes.
She has now been well over a month without a particular medication. She only benefits from the medication made by one manufacturer and with supply chain issues she’s been unable to get it. We don’t know how much this is contributing to issues right now, but it can’t be helping things. Please pray we can get her back on it soon.
Home PT and OT have been going well and she’s doing better being up and around during her “good hours.” Thanks to her awesome Occupational Therapist and gifts through the Amazon list from so many of you (Thank you!) she is settling into her adapted workspace and working on stamina for working at her computer for longer stretches. The exercises have been paying off and she has a good list of ways to expand these exercises as she gets stronger. We decided to postpone starting outpatient PT in light of COVID-19. It will be so good to get her into EDS specialized PT, but we need more time to understand the risks of taking her out in public right now. Please pray for wisdom. It may be quite some time before the need to protect her from COVID-19 is completely gone and she doesn’t want to delay Physical Therapy any longer than necessary.
She’s re-stabilized on her “safest foods” and while she still needs bottled water, she’s doing better with having it straight from the bottle and not needing to air it out in a glass container first.
Please pray that she continues to tolerate her safe foods and can manage her anxiety around eating. She needs to be able to rotate her food and without the global pandemic she would be trying to expand her food list and combat her nutritional deficiencies. In the effort to avoid the hospital it’s hard to experiment with new foods and even the “probably ok” list is stressful right now. Food is an anxious topic for her and when things got worse again like they did last week without a clear trigger her food anxiety rises. Please pray for courage and wisdom.
Thank you for continuing to follow Britta’s journey. We are so grateful for you in essential roles on the front lines keeping the world spinning and appreciate the rest staying safe at home. Thank you for all you do. We pray you are all safe and healthy and we can be together again soon.