It's been nuts in the fact that every time before I would have to be seen at Cleveland for appointments that I would somehow end up in the ER or hospitalized at least a week before my trip. Every 3 months. And each time for an infection. And each time about a week before the trip. Well, I had made a resolution to myself that my May 7 trip would be different and I would not go to the hospital before then. I did hold true to that although I think I really screwed up. I started to get a bit of a cough the Saturday before. Actually, the week of Cameron's birthday (April 26th) I was feeling quite yucky but nothing had really surfaced until about May 5 when I started to cough just a little. I felt I could hold off until Monday and be seen at Cleveland, get an antibiotic and everything would be hunky dory. If I would happen to get bad before going I would certainly go the the ER. But I held solid and things weren't too bad so I ended up waiting it out and making it to Cleveland without being seen at another ER before the trip! Success!!! Or was it?? I got the antibiotic for sure, but no up in my prednisone. On the trip home that evening I felt "decent" because Doug had pushed me in a wheelchair and I was on continuous oxygen all day but I was coughing a lot more on the return trip home. Tuesday I was miserable. It seems I just went downhill from there. My chest got crackly and I kept thinking the antibiotics would kick it. Nope. I almost went to the ER that weekend but it seems like when I do go they (no matter where I go) never know what to do for me but breathing treatments (which I do at home) and chest xray to make sure it's nothing major. So I didn't go. I waited until Monday and went to see my family doctor and got a steroid shot to which later that day I did start to feel better. She increased my steroid dosage and I figured I was on the up and up. Wrong again.
See, all I wanted...was to be well enough for this coming week because my niece graduates from high school and not only did I want to see her get her diploma, but my parents are coming in, as is my brother, his wife, and my Aunt Sue from Chicago. It's been a year since I've seen my parents; almost 3 (I think?) since I've seen my brother and Kim; and 4-5 (?) since I've seen my Aunt Sue. We were going to have a great week of catching up and good times. So now here I am. This last Thursday morning I didn't feel too horrible, but the afternoon brought different feelings and it was much harder for me to breathe. I took a vicodin and tried to rest and it helped some but I woke up at 3 am and again at 6 feeling the same and knew something was wrong so I got in touch with my family doctor who called ahead to Wayne to give them a heads up and get some tests started. My chest xray was fine (as usual) no pneumonia though which was good. My CO2 in my blood gas reading was at 61 though, which is very high and meant that my air exchange is very very poor. I was transferred to Good Sam and have been here since. I was given the choice to go to Good Sam or straight to Cleveland. I almost chose Cleveland but thought that maybe it was something I could kick easily and be close to home and be done by mid-week when everyone would start showing up for Ally's graduation.
The plan was to do IV steroids and antibiotics and hope to bring the CO2 level down by opening up my airways, which for my lung disease is pretty much impossible, but we were going to give it the old college try. So that's been going on since I've been here...every 6 hours...nebulizer treatments every 4 hours...fun times. I'm not getting much sleep which makes for even funner times! :) Doug came down yesterday afternoon and spent most of the evening with me while the kids all enjoyed a night at the Dayton Dragon's game with Janelle Bohman (thanks, Janelle!) :) and her whole crew. I felt badly because I slept some while he was here. Couldn't sleep most of the day but he comes and I sleep. :) So then the nurse last night tells me that my CO2 was down to 33 and I got really excited...but this was from regular bloodwork and not a blood gas which gives you the most accurate reading. Got the blood gas this morning and my CO2 is 56. So it went down some, which is good but it is still high. Dr. Malik (my local pulmonologist) said that I have made a little bit of progress but not much and it is very likely that I will be transferred to Cleveland tomorrow.
Sooooooo......while I do look forward to moving forward and feeling better I also can't help but feel a bit bummed about the timing. This week of all weeks. :( Doug told me to be careful what I wish for. When we were coming back from Cleveland May 7 I said....wouldn't it be ironic if they list me and I actually get the call while everyone is home during Ally's graduation? I doubt I will get a call that quickly (although stranger things have happened)...but uhm, yes, definitely ironic. All kinds of craziness...wouldn't you say??
Doug and the kids are on their way now to see me now. I haven't seen them since Friday morning and didn't give them proper goodbyes because I didn't think I would be admitted to the hospital. So I'm missing them terribly. I'll get to see them for a few hours and they have this week and 2 days next week left of school then they are done for the summer! So I guess I will close for now. I'm leaning on the strength of God within my heart to help me through this really rough patch. So far so good..I had a bit of a test of that this morning. : / I am definitely scared, I will not kid you there. But I am bound and determined to fight hard and make it through. I also have to give a big thanks to Pastor Wheeler for stopping by yesterday and seeing me and saying a beautiful prayer before he left. Made me tear up...and also to know that he had some special prayers said today at church also. I found comfort knowing I have a lot of people that are here for me and for my family.
I'm thinking I'm now at that cocoon stage after all...just waiting for God's Glory and the perfect timing for me to emerge with my new wings. :) I will try to keep my blog updated as best I can as well as my facebook....or Doug will try...(haha...we'll see...) ;) Love to you all!
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