July 18, 2008
Sidney continues to struggle as she is still very sick. The good news is that she hasn’t taken any steps backwards! She has actually taken a couple tiny steps forward. Rick made it in last night and together we celebrated Sidney’s 1st birthday. We brought in lots of balloons to her room and a birthday cake to share with the nurses. They were so sweet! They came in and sang Happy Birthday to Sidney.
A dialysis catheter was placed on Wednesday. Sidney was restarted on continuous dialysis as it slowly removes fluid and is gentler for her. For those of you who have been following Sidney’s story since the beginning I think you may remember all the problems the continuous dialysis comes with. Before Sidney had any substantial amount of fluid removed the ‘circuit’ needed to be changed 3 times (that’s exposure to 3 different sources of blood and a lot of wasted blood), her line need to TPA’d and then rewired. Dialysis seems to be running well now (knock on wood). Sidney was 200 – for the day yesterday, but is still very positive overall. As more fluid is removed she will hopefully begin to breathe easier and her vent settings can be decreased.
The Ribavirin… it was an act of God for my questions, concerns and insecurities to have been answered so quickly. Sidney was given her first (and only) dose of Ribavirin on Wednesday. She immediately started hemolyzing. There was blood in her affluent bag (fluid removal bag from dialysis) and it even appeared as if there was blood in her urine (what very little of it there is). Dr. Kato saw Sidney Thursday morning and immediately put the Ribavirin on hold. Never once did I feel completely confident in giving Sidney the drug. I actually felt backed into a wall when I made my decision to sign the consent. And if the inevitable were to happen I would feel awful for haven not tried it. Now I’ve tried it, the consequences presented early and it’s on ‘hold’. Any virus takes time for healing to happen. Sidney is a strong girl!! She’s been very sick before. She’s been very sick when her body was much weaker. Sidney is going to be ok. That must be God’s plan for her.
July 19, 2008
Late last night there was once again a problem with the dialysis unit. The circuit needed to be changed and due to a lack of consistency and a general lack of understanding of standard operating procedures where Sidney is concerned, the change was anything but smooth or flawless. Sidney received an additional 120 mls of fluid that she clearly didn’t need. The additional fluid caused her sats to drop. They were in the low to mid 80s for the duration of time when Sidney carried the additional fluid, while she was on 100% oxygen. Around 1 am this morning the dialysis machine was restarted and by 1:30 she was stable at a removal rate of 80mls / hr. Sidney’s total fluid intake per hour is 20 mls so she has a net removal of 60 mls / hr. Sidney is still at a removal rate of 80 mls / hr and her sats are better. She still needs a lot of fluid removed. Please pray for no dialysis problems today.