February 7th, 2013- Today has been a sleepy but good day. My LP went very well even though I was nervous about laying on my stomach, it wasn’t an issue. As usual I did end up sleeping for a significant amount of time after I got back to my room but thankfully I didn’t miss too much time with Bryce. My ankle is still very irritated but the swelling has improved and overall it is much less painful when I move around. The PA ordered a consult from endocrinology to discuss my adrenal issues that have caused me to be on low dose steroids constantly. They said I would be starting an even lower dose that will match what my body would normally produce during a typical day. However, due to the short recovery times during this entire process they are not able to ween me off the steroid and ‘wake’ my adrenal glands back up. I will therefore be on the maintenance dose of hydrocortisone steroid pills until after my transplant is well behind me in order to supplement my inability to produce cortisone. The good news is the usual side effects of fluid retention and muscle deterioration should stop since my body will be getting the normal amount. The somewhat scary fact is that should my body have an issue, be it a bad illness or an accident, it will not produce an increased amounts of cortisone which could save my life. Due to this limitation I get to wear a nice piece of jewelry, medical bracelet, and will be carrying around a high dose steroid shot which can be injected into my leg in case of an emergency. The whole thing is definitely not permanent but will be going on for awhile. My booster shots are starting to make me feel run down and sore, similar to the flu, and are causing a decent bit of leg and back pain. Oxycodone is doing it’s job to keep things under control and at least this way I know it’s working!
Bryce came by a little bit after my LP was done so I was in and out of sleep plus under orders of bed rest for a bit. Thankfully after my nap Bryce had finished his bottle and was ready to play with mommy. Grampy discovered last night that making fake burps sends Bryce into a fit of laughter so David took full advantage of the discovery this afternoon. He has the most magical laughter imaginable!
Pictures done? Gimme that paper!
Bryce burp and giggle!