BP has been high most of the day and just hit 180. They are trying different doses and changing the timing of some. So far we are not impressed with the results. As we've noted many times, it's almost impossible to get anything done on the weekends. Our regular doctors are not on duty and the on-call doctors never want to make any changes to a non patient; so it's always "hold on till Monday." When BP is at 180, don't tell me to hold on!
Alyssa only had one treatment today versus the two-a-days that she has been going through. Her blood levels have been improving gradually and she is starting to feel better overall. Monday will be day seven of this latest visit and we would love to make it the last day. We'll see all of her doctors on Monday and there are plans for both plasmapheresis and dialysis treatments. No rest for the weary.
The following is written with nothing but the utmost respect for Alyssa's fellow patients. That said, when you spend as much time in a hospital as Alyssa has, you need to look for anything that will make you smile, much less laugh.
The unit that Alyssa is in now can only be described as surreal. We have a nice man next door who sleeps all day, then yells out names all night. Let's just say that sleeping without an Ambien is impossible. Then down the hall is another nice man who sits in a wheelchair outside his room...buck naked! He removes his gown, neatly folds it, and lays it on his tray...over and over again. Once the visiting hours have ended, they just let him stay naked as that is what makes him the happiest. Alyssa has named him "Skinny Naked Man" after the ongoing character, "Ugly Naked Man" on her favorite TV show, Friends. Oh, I almost forgot; across the hall is another man, who also sits outside his room, you guessed it, naked. He's a little beefier, so we call him "Heavy Naked Man." Alyssa has sure seen and experienced a lot for a 21 year old.
Finally, this afternoon Alyssa and her mom hijacked a wheelchair (no, not naked man's) and snuck out the hospital's front door to breath some fresh air and feel the warmth of the sunny spring day. Through a huge smile, she commented that she will never, ever, take either for granted again.
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Alyssa,
ReplyDeleteThank you and your family for the lovely thank you card. It was so not necessary!!! But I look at it on my desk and think of you every morning.
I also wanted to take a minute to ask you if you are keeping a personal diary of all the feelings you have about what is going on in your life. If not, you must get one for you to keep and write in for your eyes only, where you can write down anything and everything you feel, just to get off your chest. It's helped me recently through stressful times, so if you aren't keeping a diary, I hope you start one. When you are through this ordeal, maybe you will publish a book on what it takes to beat this. :-)
Debbie N.
I love Debbie N's idea. I was thinking after reading the blog that you will have some great stories to tell about your experiences in the hospital. Remember when you entertained the idea of journalism, as you liked writing? I think the diary is a great place to capture your thoughts/feelings and it will be therapeutic to you! You can always type it on your laptop and save it each day. Like Debbie said, for your eyes only!
ReplyDeleteI know you had a rough day but tomorrow will be better, so hang in there! Powerful prayers are coming your way! The girls I work with ask about you every day and pray for you and have their family praying too. This is a tough road for all of you and you all amaze me with your strength and great attitude.
You are my sunshine! Love you!
You are on the right track, keep looking for those smiles and laughs! I think the journal is a fantastic idea and combined with this blog would make a great start of book.
ReplyDeleteGrandma Deff found an article about "nightime dialysis" and kidney disease in this morning's local newspaper "Florida Today". I located it on-line and share the link below.
http://www.floridatoday.com/apps/pbcs.dll/article?AID=2009903240311
As always....take care!