Tough week
13 November 2016
On Monday 7th November, Isabella was rushed to PICU (Pediatric Intensive Care Unit) due to issues with breathing. She was minutes from losing her battle. The inability to breathe was due to a rare bug she had picked up (Stenotrophomonas Maltophilia) that the transplant doctors see once or twice a year. It's extremely dangerous and very difficult to treat. There are no guidelines on how to get rid of this bug as it's so difficult.
She's been put into an induced coma and has a tube down her throat to help her breath. The machine was doing most of the breathing earlier this week however it's now doing less of the work and Isabella is taking some breaths herself.
This infection has spread throughout Isabella's tiny body and is in her blood stream. It attaches itself to plastic (she has multiple tubes going into her to keep her going) so again - difficult to treat as they can't remove the lines.
The medication used to treat this bug is supposed to kill off her blood cells - which she needs to help her fight infection. On speaking with Cindy today, it seems the medication isn't working - she has white blood cells growing. Which on one hand we want to see (so she can fight infection) but on the other, having no white blood cells would mean that the medication is working. It's very confusing.
Isabella is suffering from multiple organ failure - heart, liver, kidney and lungs. She's puffy (not as much today as she was earlier in the week) and couldn't expel liquid so they have had her hooked up to the dialysis machine on and off to help her.
The family were told on Wednesday to prepare for the worst as the doctors aren't confident that she'll come out of this situation. Obviously they're all devastated, none more so than Cindy and her boys.
Isabella's lungs are damaged, her heart is damaged but is working on it's own now (not as much as it needs to be but still working), liver damage (but this can fix itself), and kidney damage. She's still on medication for her kidneys.
If she gets through this awful experience, she'll need to undergo testing to check how badly her organs have been damaged and whether or not anything can be done to fix / improve it.
You'll see in the photo attached that there are many machines surrounding this baby girl. I counted 9 when I was visiting yesterday. Way too many for such a small human to have to deal with and so unfair. A sad, devastating turn for the worse to say the least.
Cindy has been spending all of her time down in PICU with Isabella, talking to her, touching her, helping the nurses (who are there 24/7) care for her. Sometimes she sleeps in the RMH rooms on ward 3, other times she sleeps in the lazy boy chair in Isabella's room. It depends what's going on however her phone is always next to her whenever she's out of the room, just in case. Needless to say she's exhausted, but she's doing an amazing job and I'm so very proud of her.
Cindy is very thankful for everyone's support and love and appreciates the financial assistance and words of encouragement.
It's going to be a very long hard road ahead but Cindy has been advised that they are expected to be out of PICU by the end of the week. What happens after that is anyone's guess.
Thank you again to all of you who have donated to this Givealittle page whether that is a small donation or large, it all adds up and helps out this family to cover costs and keep going.
Please share this page and Isabella's story with your friends and family.
Much love x
