Saturday April 30th Day +23
Not too much happened today. My fevers are gone and my blood pressure is better.We are waiting to see if the blood cultures grow anything.
It’s been wonderful having Michelle here. We have been reminiscing about stories from childhood. It’s been nice to forget about my present situation and to laugh about memories from the past.
Sunday May 1st Day +24
Not much to report today. I hate having these IVs in my hands/arms. They really hurt and its harder to move around because I don’t want to lean or tug on them. When I woke up this morning one of the IVs in my left hand hurt really badly and my hand was all swollen. They had to remove it and put a new IV in. I feel like a pin cushion. Thankfully they are going to put the PICC line back in tomorrow as long as my blood cultures clear.
I continue to have sinus headaches which is very frustrating. Alexx is going to ask them to repeat the CT scan of my sinuses tomorrow just to be safe.
I’ve been drinking 1-1.5 Ensures a day. They told me I can start reintroducing simple foods like mashed potatoes. However I am scared to start eating because I don’t want to get obstructed again. Everyone keeps telling me my belly is soft and not to worry..but I’m terrified. I don’t want to have that pain and pressure again and I don’t want the NGT back in.
I am having extreme difficulties with sleeping. At baseline I take an OTC sleep medication every night at home. They have been trying Lorazepam and Phengren for sleep and neither helps. I wake up every few hours. Between the anxiety and insomnia Alexx asked for a psychiatry consult and I met with one today. He said they will try something new called Vaben, a differen benzodiazepine.
Today is my mother’s birthday. She would have been 89. I took care of her at the end of her life when we brought her home with hospice. It was a very special time for me. My mother was a very busy woman and those few months when I took care of her were some of the best bonding we had shared. I harness her energy, and the energy of her mother-Adele- when I am feeling weak and need strength to inspire me. I come from a very strong lineage of women.
This is the only picture I have of her on my IPad. She is with Perry, the love of her life. Happy Birthday Mom!
Monday May 2nd Day +25
The sleep medication worked pretty well. I slept for 5 hours straight but then woke up, so they gave me another dose which also worked. I slept about 7hours which is the most I’ve slept straight in a while. Alexx slept over so I’m glad she got to sleep too.
I woke up with a migraine which sucks but something I’m not a stranger to. I took my sumatriptan and it helped. Today is the first day I feel a little better. Even though my head and tummy hurt, I feel a glimmer of hope
And guess what?!? I get my PICC line today! No more IVs and blood draws.
Me and my family waiting for the PICC to be put in.
Love and light. I miss you all and can’t wait to come home!!!