Friday, August 7, 2015

Days +3 and +4: digging deep for strength

Sorry that my daily posts have ceased. The last two days have been trying. The reason has been unconventional. When I received my IVIG treatments I suffered from phlebitis, a painful inflammation of the veins. This deep vein pain brings me to tears and typically renders that arm useless.

On day +3 (Thursday) phlebitis started in my PICC line. No position is comfortable, feels like my veins are spasming and someone is vice gripping a deep bruise. I had to ask for a strong narcotic to kill the pain and my arm seemed to settle for the day. After that the day included some ups and downs with blood pressure, dizziness and nausea. In general I just felt off. I'll, irritable, uncomfortable...a mix of just plain ick. I managed to get some laps in with OT using just my cane (I had reduced to a walker the last few days due to weakness) to practice balance and it went well. Parents came by with chicken Pho soup, I watched the minion movies to cheer myself up and I had a good rest for the night.

Day +4 (Friday) started out well, had some decent sleep. parents came by with the days laundry and helped me organize some things. Had another icky spell and low BP that required 2 hr of fluids. After that I felt better. More laps with OT and even better balance. Around 5pm it took a turn to the current situation. More phlebitis in the PICC. Allison came by to check on me to find me in tears. Unable to move my arm or find a comfortable position for it. Dr. Burt was called and the suggestion is to remove the PICC and place a new one on the opposite arm for the duration of my stay. This PICC held out 11 days, so the hope is that the new one will last the remaining 6 or so days without issue.

I will discuss with Dr. Burt in am as he placed the order to happen tomorrow. The only other alternative would be a scheduled around the clock  dilaudid drip, which would render me useless the next 6 days. I'm typing this entire post with my left index finger and am wiped. The steroid surf doesn't help with stress coping either so I have gone through way too much Kleenex in the last 80 min.

I'm grateful for no migraines today, no vomiting, increased balance and steadier gait when walking, a decent appetite and so far sleep has not been an issue. Just have to somehow overcome the one thing that brings me to my knees.

Hoping for a better day tomorrow.


  1. Ever so gentle hugs floating northwards to Chicago. So sorry you're feeling crap. Let's all be positive that you'll have a better tomorrow.

    Great news that you've advanced from the walker to a cane. Any progress, no matter if it's slow, is still progress.

    Rest up, watch your crazy movies and sleep your way through it for a few days if you need to.

    Almost to the end of the marathon. Not far to go now. :)

    Much love, as always xxxxx

  2. Steph my love, I am so sorry to hear what you're going through, but happy that Dr. Burt and his staff are on top of it. Your emotions are running wild, that is to be expected, but you will be out there before you know it. There will be a day when you are talking to people about your story and the tears will flow once again, but those will be tears of gratitude, joy and happiness. Hang in there, you are a WARRIOR! hugs to you.

  3. Your continued strength through all of this is just amazing!! You are an inspiration and this journey will be all worth it!! Xoxoxo