Light in the Darkness: I Get What I Need

Well this morning I got some hard news. My pseudomonas from my culture I gave when admitted came back resistant to Meropenam, the antibiotic they are giving me. However, my culture in clinic on the 11th showed sensitive to Meropenem. The PA talked about how we look at the lungs as a "neighborhood" and one culture can be from one area of the lungs and another can be from a different area depending on cough etc. This is why I get cultures every three months so they have more of a "culture profile" to draw from and don't just treat based on one culture. The "scary" part of the conversation was when he said, "Your resistance profile is not good." This means that my pseudomonas is multi-drug resistant or resistant to a lot of antibiotics. I asked a couple questions...one was I had heard years ago that if I'm resistant we can treat over a longer period of time, but he said that will just make me more resistant. Then I asked if now is the time to consider using IV Colistin, the "last resort" drug we had talked about in clinic. He immediately shook his head and said, "I wouldn't give you IV Colistin except to keep you out of the ICU at this point. You need to really consider and be careful about when to come in the hospital and when to ask for IV antibiotics because we will run out of options to treat and then there's nothing we can do. I know what I'm saying is scary." I told him I appreciated his honesty and that even though it's a scary conversation, we would rather know and be more sparing in our use of meds than not and there's a reason we moved across the country for the clinic. Other places I was treated would use lots of antibiotics to treat any and every infection which has helped get me to this place sooner rather than later. Obviously God is sovereign over that, but this is obviously very difficult news to process. Again, something that is expected with the progression of PCD, but it's hard to hear when you actually get there. When I talked to Jord we talked a little bit and then he responded with, "Well at least you won't have to worry about side effects then." LOL Thankful for my man and his humor...not only is it helpful to laugh in the midst of difficulty, but it's really good airway clearance for me too. ;) ....................We also talked about going home--if my PFT's show improvement there is still a possibility of going home today, but he said it takes a lot to coordinate all the logistics so it will most likely be tomorrow. I'm praying, and would love for y'all to pray, that things will come together today so I can go home with Mom and Dad this afternoon/evening, but if not, Hannah P is set to come get me tomorrow, so either way, I know God's plan and timing will be perfect....although sooner is better because the other night I was talking to Jord and he was saying, "I open these boxes and I have no idea where any of this stuff goes, so I can just throw it away." and I was like, "NO, no...back away, do not touch, I will be home soon to help take care of it!!" LOL So thankful for the design of marriage and how we complete each other and being married for so long, we each have the roles and what we do to help each other and how we work so well together...I definitely am the administrative one in the relationship--do the bills, paperwork, pack, unpack, organize the house etc. He can and has done all those things when I can't, but it works best when I can take care of those things and he works and provides for us and takes care of researching things, taking care of the cars, yard, anything mechanical or electronic....as an engineering technician he is a perfectionist with a lot of things and I'm the "ah, it's close enough" girl which can drive him crazy, but we just work so well together--God truly made us for each other.

I texted out some of this update with my verse texts this morning and got questions about what do you treat with now and what does that mean for surgery April 7th? For now, since I'm responding to the antibiotics symptomatically and feeling better, we are going to finish out the 14 day course of them, then give my body a break from meds before surgery. I'll have the surgery and then depending on how my lungs do after surgery, go from there. I'm SO thankful for how thorough and careful they are here and that they will have those hard conversations to let you know where you are at, why they are making the choices they are making, and educating me so we can pray and make better choices overall. Jord and I talked and for us, this means taking other things we CAN do a lot more seriously at this point. I will be starting a Paleo diet, exercising everyday (as the goal, knowing it won't be perfect), and looking into and researching other ways I can help my body with nutrition and supplements and other modalities that can be beneficial. The balance is being a wise steward--our Pastor is preaching through Proverbs right now and we just got done talking about finances and that has been an issue in the past where I was so determined to do supplements etc that I spent way more than we could afford on things that didn't end up making that big of a difference. That's why I'm so excited about being able to see Terry Wingo at Madison drugs because he's willing to work within our budget and is so kind, compassionate, and helpful. He and Dr. Solomon both are--it's amazing to finally have them both on my team....God always provides exactly what you need when you need it. And as "Papa" Butch said to me when Grandma was in hospice, "God is never a second too late or a second too early." Dr. Solomon came in just as I typed his name lol and he said as long as my PFT's show some improvement I can go home today! So pray they have improved! He also had me call my surgery cordinator at Dr. Macintosh's office and talked to her and figured out what they need for surgery clearance. He said after we got off the phone that sometimes when the OB's see their note, they balk and refuse surgery. He said he cannot say I am "low risk" for surgery because of my lungs I'm at high risk but he said if he isn't comforatable doing it, they can get me in with an OB here to do the surgery because they are used to doing surgeries on more complex patients and work with the pulmonary team here, so I will get it done, it's just all in God's hands right now! Mom and Dad are on their way down with a Good Company salad for me so I'll be eating a super yummy lunch and then Lord willing, hopefully packing up and going home with them tonight!........I have some more stories for you too about God's transforming grace from my nurse Candace (who said I could share her story) who got saved 6 years ago out of an opioid addiction and was at a nearby jail earlier this week ministering to women in jail and she said 17 people got saved. She was my nurse yesterday and today and is the sweetest sister in Christ. Justin, the guy that has been cleaning my room all week, is off today, so I met Q who is also a believer but has a Mom in the hospital in Mississippi and an Aunt on life support in Mobile and is also in school and has a cleaning business on top of her job here. Please be praying for her Mom and Aunt and for Q to be able to know what to do when, as those are two very difficult situations. I'm gonna sign off for now and get some exercise to get some junk out of my lungs so when they come for PFT's they should be better!! :) This is me and Candace :)