Fell short of the finish

It's a lot different here today than it was on Wednesday. Everything was looking up on Wednesday and then Thursday I just didn't feel right. I couldn't verbalize what was wrong and I wasn't running a fever but I just felt anxious, like something was going to happen. Friday I felt worse – super tired, no appetite and chilled all day. By Friday evening my fever came back, topping out over 103. So, needless to say, it's a good thing they didn't let me go home Friday morning or I would have been back in the ER last night and we all know how great that would have been. Last night they sent out some cultures but I don't think we have any results back. In fact, it's 9:00 and I haven't seen anyone this morning – not even the nurse aid. I hope this isn't a sign of how the weekend will be but I'm afraid it is.

Thursday update:

Clinically, things all seem to be on the up-and-up. Fevers have stayed away, labs are improving, lungs seem to be opening up. All the cultures remain negative and the biopsies are negative as well. My doctors have stopped 2 of the 3 IV antibiotics and plan to stop the 3rd one tomorrow. At that point they'll switch me to an oral antibiotic and as long as things continue to improve, they'll let me go home! I can't explain it, but it's a very strange feeling. As you can imagine, I'm definitely done with this 9x11 room but I just seem to feel uneasy today. I don't know if it's just exhaustion from being here all week or if it's my stomach saying that it's done with all the meds or if I'm anxious about what will happen when they stop the IV antibiotics. Probably a mix of all 3. I feel apprehensive and a little nervous about the thought of the pneumonia re-surging AGAIN. I don't think I can do another 6 days in the hospital if this doesn't work. In my head I know that I shouldn't worry and in my heart I know that I need to give this over to the one that always walks through the valleys with me, but I just can't seem to get over the hump today. I guess we all have days and this one seems to be mine. Please pray for my peace to return, the pneumonia to stay away, and for me to regain the strength necessary to return to work on Monday!
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” ~Isaiah 41:10

Entry 3 – read below to start at beginning!

Wednesday – another day in the hospital but today I really feel like I've turned the corner. My fever did not come back last night so I am past 48 hours of no fever! I talked with the pulmonologist this morning and she was optimistic. Still feels like everything I've experienced is bacterial in nature rather than GVHD or cancer... So now we are just waiting on the culture results to start coming back so that they can start weaning the IV antibiotics and start putting me back on oral antibiotics and then discuss sending me home! Waiting is so hard and I know that we all do it every day but despite all the practice, I never seem to get any better at it. I do, however, feel like I am able to wait in peace and not in a state of anxiety or worry so that is a true blessing. I heard someone ask one time whether we wait for God or with God and I think the answer is both. I definitely feel his presence with me as I wait for his perfect timing.
Post note – as you figured out, what I thought was a “God thing” yesterday turned out to be too good to be true. The transport guy thought he had me connected to the internet yesterday but I let him out of the room before I tried navigating to any other sites. It was only then that I realized I still wasn't connected. This is the first time I've had an extended stay in the hospital without access to the internet or way to update my blog and I'm finding it very difficult!
2 hours later: I just figured out that my computer will stay connected for about 20 seconds before it loses connection so if I work really fast I can get a blog posted. So I don't really have access, but I kind of do. If anyone out there is a computer guru and has any idea why my computer can't authenticate, let me know. The nurse assistant looked at it this morning and thought it looked my firewall was blocking the connection so she tried turning it off, but that obviously didn't work. Wonder if a virus could be causing this grief??

Tuesday update

So you don't have to look hard in your life to find a “God thing” and I'm going to share just a couple before I continue with today's entry. Yesterday, my parents were in route from Cinci so weren't at the hospital until the evening but a good friend that works part time at this hospital got called in to work so she was able to pop in a couple times -bringing a smile and friendly face.
I had planned to post a blog yesterday but couldn't get my computer to log on to the wifi, well I don't know anything about technology and my nurses didn't know and you all know what the help desk folks at a hospital have to offer (and it's not computer assistance). So, I had resigned to the fact that I wouldn't have email or internet access during this hospital stay. This morning, the transport guy came to my room to take me for my CT and my mom asked if he knew of anyone in the hospital that might be able to help us. Turns out that what he's in school for so he had me connected in about 2 minutes.
OK, so now to the update. (what I would have posted Monday if I had had internet access is below so you might wish to read that first) Yesterday went ok. Spiked a fever of 103+ around lunch but haven't had one since. Slept pretty well all things considered. This morning my labs are improving (WBC dropping for those who care/know). Talked to pulmonology who recommended a CT of my lungs along with a bronchoscopy (tube into my lungs to look around and then culture the pneumonia to look for scary things) so I'll get both those things today. That's good because more info will hopefully speed my release but bad because I can't eat or drink until I have the bronch and that's not scheduled until 2. Ughh. I should have eaten more dinner or woken up early for breakfast! So that's what I know today. Will update again tomorrow!

He sent forth his word and healed them; he rescued them from the grave. ~Psalm 107:20

Monday update

Well, things aren't going the best so looks like I'm going to be back to fairly regular blogs (but hopefully not too long!). So I was feeling so much better and then last week things started going south again. Went to the doctor on Wednesday, diagnosed with pneumonia, started back on antibiotics. Followed up on Friday – I was still running fevers, but my doctor thought everything was trending in the right direction so I just stayed the course. I had a pretty crappy weekend, things kind of stopped improving and I was still running fevers on Sunday so my doctor said I needed to go to the hospital. She tried to put me at Menorah (where I could just be directly admitted), but they refused to take me due to the complexity of my life, so I had to go to a different hospital and enter through the Emergency Room. Oh my gosh – thank God I don't have to do that too often! ER's are so gross. First impressions were some young guys peeing in the parking lot and when I got in, their friend was puking in the ER. The waiting area was kind of dirty – they don't wipe anything down in the triage area between patients,. So, being the germ-freak that I am, I requested the nurse wipe everything down before I was triaged and then pleaded for anyplace to wait besides the waiting room! It took about 2-3 hours to get out of the waiting area and a total of 9 hours before I finally got to my room! Ridiculous. Thank God for a selfless friend who volunteered to sit with me in that suss pool – if she hadn't been there, I think I would have left which would not have been a good idea. I just know I'm going to pick up something worse than I already have from the ER. Anyway, that is over but, I'm a little tired today after only 4hours of sleep last night. Now that I'm in the hospital, it's very nice. Everyone is friendly and they seem to be creating a plan but doesn't look like it's going to be a fast process. I'll try to give at least a short update each day until I get discharged. As always, big thanks for everyone's prayers – that is truly the best gift you can give. As I've read all the uplifting notes and verses it brings such a peace and the tears that come with that sort of peace. I'll share just a few.
Now to Him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us. ~Ephesians 3:20
For the eyes of the Lord are over the righteous and his ears open to their prayers. ~1 Peter 3:12

continued...

I've attached the "to be continued" to the bottom of the previous blog so see below...

March Madness

I hate that lately I only actually get around to blogging when things aren't going the best, I've procrastinated posting about how great the first 2 months of the year have been or how blessed I was to be able to take my first “warm vacation” since 2009. Key West with great friends was a perfect way to end February (especially since it allowed me to miss some nasty KC weather). But, as I said, I didn't manage to get a happy blog posted so now it will have to wait. A week or so ago I started with what seemed like an innocent cold – but in the back of my mind, I knew better - none are innocent for me. Last week was a bit of a roller coaster with a bad day followed by a good day. Just enough good to keep me from getting too worried. By Friday the ball dropped, and my oxygen levels were low enough to get me admitted to the hospital, but I didn't want to go to the hospital. I know what the hospital offers and I was already doing all those things: fluids – check, breathing treatments – check, steroids – check, antibiotics – check. In my pessimistic view of the world, the only thing the hospital was going to offer me was lack of good rest and exposure to a bunch of additional germs. Probably not the wisest, but decided I was sticking to my plan until Monday – if not better, I'd go to the hospital. I'm not going to lie, the past 3 days have been rough, especially the mornings. I've spent a lot of time on my knees and have shed plenty of tears. Tears of frustration, tears of fear, tears from hearing the voice of your mom, tears from the feeling of going completely broken before our Lord. God always gives us the help we need, but in the middle of the storm it can still feel pretty hopeless. I know that it will get better, or it won't and there's not much I can do to affect that. As a good friend reminded me today, we all know who's managing this ride and it's no one on this earth. To be continued.....

Update: March 25. Sunday evening after writing the above post, my lungs seemed to relax and open up, and I've been slowly feeling better since then - yea, praise God! I'm definitely not 100% but feel like the tide has turned. It's frustrating to think about the future because once I get a cough like this it seems to take 2 months to go away, so I'm going to not think about how long it will take for this to go away and instead try to be content/grateful for today (a day where I'm able to go to work and am not on oxygen!)