Not every day can be great

Today has been a bit rough around the edges. Woke up and had to use the bathroom NOW, so it was a race to undo my leg clampers and disconnect my chest tube bubblers and drag them to the bathroom. I was very short of breath, which scared me b/c I am so used to that feeling... I came out of the bathroom and the chest x-ray people were here, so I did that. Then I started feeling bad in my tummy, so back to the toilet I went, where I stayed for 30 minutes and was short of breath for most of it. I did manage to finally get back into bed. Dr. G came by and mentioned getting out my chest tubes. I told him about my fun morning and he said he'd pass it along to surgeon Dr. G. So I have a breakfast I didn't order (but my nurse is the bomb and hooked me up with some of what I DID order) and then I started having horrible chest and back pain. Nurse C thought it was gas trapped in my chest cavity. So I got a dose of Fentanyl to help with the pain, and then my dose of Percaset. Jeff and I walked 3 laps around the floor trying to get the gas to loosen a bit. I am in SO much pain by this point. I came back in the room and crashed for 2 hours. I was exhausted from this morning, in loads of pain, and hoped to sleep it off. Surgeon Dr. G came and talked to Jeff. My numbers all look really good and they wanted to pull the tubes today, but b/c of the chest gas they'll just wait until tomorrow. That's fine with me. So I woke up after my nap and the pain was GONE. I feel good. Jeff went to Rubio's to grab some lunch for us and all is good again :-) So I brushed my hair today. It comes out by the handful when I brush it. Nurse C says it's b/c it's not brushed daily, so it accumulates. I dunno. It's quite a bit o' hair. I think some of it is trauma from the massive surgery I underwent. I know the drugs I am on also cause hair loss. So I am kinda sad about that, but not too worried. I am alive and I can always wear a wig :-P Nah... I think it will be fine once I get out of here. Holly stopped by this afternoon to wash my nasty ol' hair. Two of the nurses helped tape up my neck (I still have my Frankenneck for dialysis) and wrapped it with a towel so it wouldn't get wet. Oh, man, having my hair washed was simply awesome. It feels clean and soft and smells good! It made my whole day! Then Holly left to get her own hair cut so one of the nurses helped me "take a bath" with hot water, baby shampoo, and washcloths. Oh, to rub the tape off was so awesome! I swear I have found bits of tape all over my entire body. Jeff found a chunk of tape stuck to my back and we couldn't figure out why it was even there. I feel so clean now and then Fred and Kathy stopped by. I was on cloud 9 from being clean, so it was a great visit. They brought yummy snacks and some magazines and then they walked 2 laps with me this afternoon and I am feeling really good now. Jeff is taking a nap and I think I'll follow suit. Those bubblers make me so sleepy! So I took a little nap, called my friend Bee and Jeff went home to clean up some of the house. Good grief, he has been burning his candle at both ends. I make sure he leaves here every night by about 10:30pm so he can go home and get a good night's sleep. The problem is that there is so much going on (job change, updating my EFM status, etc etc) that I don't think he gets much sleep :-( Holly stopped by again after her hair appt and we had a good time just sitting here doing nothing. I did drag her with me around the halls for one long loop. She was amazed how well and how quickly I was moving! Then Jeff brought dinner so Holly headed home. Unfortunately, dinner brought the unwanted consequence of more time on the toilet. It's kind of a big deal b/c it affects how my meds are absorbed. If my anti-rejection meds aren't absorbed then there could be problems with rejection. They took a culture (gross, I know) and we'll know more in the morning. Thank you so much everyone for the cards! I have had such a good time reading them all. Jeff opens them up so I don't touch the envelope with all the germs, but he lets me read the cards and then I sanitize my hands with alcohol. Phew! Having no immune system is a crazy experience. Jeff wipes down everything I touch with alcohol wipes. He is doing a really good job keeping me "safe." The cards really make my evening great- he brings some every night! I love them! I hope all of you have a wonderful night. More updates to follow soon...