Praise the Lord, I am continuing to feel better! My sputum is getting lighter, thinner, and less of it. My liver enzymes are coming down and most importantly, I'm feeling SO much better! I had enough energy to walk outside this morning and my tech took a picture of me in front of some beautiful purple flowers. I love this time of year--after living in MT for a year with actual seasons, spring had a whole new meaning after the long winter. Here in AZ, we don't get that contrast, but I love the wild flowers that are blooming everywhere and I can't wait to get out of here and see them for myself!
I will have Pulmonary Function Tests or PFT's tomorrow which will be a determinative factor in when I get to go home. Yesterday I was told there is a chance I could go home THIS Thursday!!!!! Talk about exciting...but at the same time, I'm trying to hold that lightly so that I can not be disappointed if that is not God's will. It depends on how long they want to do the new antibiotic. My hospitalist is pushing for sooner rather than later because I'm on day 46 of heavy duty IV antibiotics and we don't want to do other damage in trying to get control of the Pseudomonas. Not only are they heavy duty drugs, but I'm also on heavy duty doses--the typical dose for both of them is every 12 hours and I'm on every 8 hours with higher than normal doses. The Colistin is kidney toxic so I'm on IV fluids 24/7 right now to help flush stuff out so my kidneys don't have issues. So far it is working, but we don't want to get to that point when we have to make even more difficult risk/benefit decisions, especially with how my liver has been acting up. Normal liver enzyme or LFT levels are from 25-50 and mine have jumped from 25 to as high as 450 at one point. Thankfully, they didn't stay high enough long enough to do any long term damage and I had two different ultrasounds just to make sure nothing serious was going on. As a result of that, my platelet count went down at one point, which is your blood clotting red blood cells--so I was bleeding and bruising so much easier because of that. As with any drugs, there are always side effects so with me there is this constant game of trying to keep the Pseudo from permanently damaging my lungs and making my PCD progress faster, but not killing the rest of my body--like my poor GI system that is simply trashed after 32 years of basically living on antibiotics full time. A radical diet change that my GI suggested way back on February 19th right before I got admitted called the FODMAP diet has helped my GI symptoms significantly. The hardest part of the diet is no garlic, beans, or onions--ummm I grew up in Tucson and don't know how to cook without those three things! God has graciously provided people around me that have had to do radical diets as well so I've been given great tips and some yummy recipes that go with my diet!
Another sweet kindness of God is that a family friend that watched me grow up posted this picture on my fb wall last night and said, "This is for you--your light is always shining."
Turns out, she painted this, and is giving me one!!!!! Yvonne, I can't tell you how encouraging this is to me and I can't wait to get home to my new house and start decorating! And cooking and having people over to thank all of you that have so graciously prayed for us, loved us, encouraged us, and helped us shoulder these boulders God has given us to carry--we couldn't do it without you! Also--please pray for the following:
*Jordan's health--he woke up not feeling good this morning--weak and shaky and just plain worn out.
*Kenzie--I met her Granny in the elevator--she's a 3 year old little girl that just started chemo.
*Louis--a Pastor that had to do a funeral for a 1 1/2 year old little boy last night--please keep him and the family and friends in your prayers.
*Ashley and Shawn--one of my PCD friends who finally got pregnant after 5 years of not being able to and found out at 30 weeks that her precious little girl has Trisomy 18 and "is not compatible with life". We know the One who controls life and please pray for a miracle but also pray for comfort, peace, and wisdom as they walk this incredibly difficult road.
*Colby, Colton, and their Mom and Dad--Colton has PCD and Colby has another rare disease and is septic and fighting a very serious infection and in critical condition.
*Tori's parents: Tori is a friend's cousins' daughter who just passed away from Krabbe disease on Easter morning--she was 1 1/2 years old.
*A four year old little boy that was just told his cancer is stage 4 and his chances of surviving are 20-30%
*Several unspoken prayer requests
*That I would continue to put "others needs above my own" as God calls us to in Philippians 2 just as Jesus did. Yes, I've been here for a long time, but I have Jesus, a wonderful husband, family, and friends that love me, care for me, and shower me and Jord with His love and care. Thank you for being Jesus hands and feet to us as we have traveled this difficult road--it is far from over, but I'm hopeful and encouraged that I am feeling so much better and have had very minimal reactions to Colistin--a drug that typically has many debilitating side effects--I truly believe it is because of your prayers to the throne of grace on our behalf. I can't wait to get to heaven and see the crowns all of you will have to cast at Jesus feet for praying on our behalf. Remember--if all you can do is pray for us, that is THE most important thing you can do because God is the only One who can truly change our circumstances in the blink of an eye--or change our heart to accept unchanging difficult circumstances. I'm so grateful to the God who has grown us tremendously in this trial--to Him be the glory, great things He hath done!!!!
Praising Him!
Rachelle :)
***Update 11:30: Just saw the doc and the plan is 14 days with both antibiotics so next Thursday will be my release date--so 8 more days--let's do this!****
No comments:
Post a Comment