I wish I had better news but I don't. Once again Julia is back in Sick Kids. Julia had not been herself the last week or so and on Thursday afternoon her home care nurse noticed that something wasn't right. She found her heart rate low and blood pressure a little high. I called her oncologist and she asked me to bring her in to be assessed. As I was in the car I was thinking great another day wasted in emerge. Boy was I wrong. Within an hour of being in emerge Julia deteriorated and became very unwell. Doctors were scrambling to figure out what was wrong and everything was pointing to her heart. An emergency echo was done, high dose antibiotics were started and we were moved to the 8th floor. Julia continued to deteriorate overnight and into yesterday. She reacted badly to one of the antibiotics and vomited with every dose infused. Our transplant team came to see me and told me that there may be some subtle changes on her echo pointing to possible rejection. They ordered a special echo be done and if they saw the same changes they would rush her into the OR for biopsy. I stood over her bed panicking and pacing all day watching her heart monitor knowing there was nothing I could do, but prayed that my baby girl would fight. It is the worst feeling in the world watching your child deteriorate fast in front of your eyes and feeling so helpless. Last night cardiology confirmed that the echo was fine and her heart is stable. It was a huge relief.
Her chest xray is also still showing 2 spots in her lungs. The thought was that it was pneumonia but after a 10 day course of antibiotics the spots are still there and her symptoms continue. Now the team is focused on the lung issues. She is feeling a little better today and docs now believe everything may be related to what their seeing in the lungs. The fact that she improves once on high dose IV antibiotics after 24 hours tells them its bacterial and responding while on IV but once she comes off she gets sick again. There is some talk about a possible biopsy of her lung to try and figure out what exactly their dealing with. Although I am hoping this will be a last resort as a biopsy of the lung is extremely dangerous. As of this afternoon the thought is that Julia may require a full 2 weeks of IV antibiotics to totally clear the infection. It is the weekend so not much really gets done in here and talks probably won't pick up again until Monday.
I feel like I am living in a never ending nightmare. Every time I turn around there is some medical crisis to deal with. One of the nurses said to be yesterday that she doesn't think they've had a family here so much and for so long (3 years). We walk onto the ward and everyone knows us like family. We really have spent way too much time in this place. Even the cleaning crew, security guards, and Starbucks staff know me by my first name.....how depressing. My life is so chaotic. I am always cancelling appointments, plans, and shuffling Anthony and Emily everywhere. Poor Anthony had no idea until being picked up at school Thursday by another mother and told he had to go stay with Nonna again. I know the saying "God only gives you what you can handle", but honestly I'm not sure how much more of this life I can handle. Not sure how many more times Julia can battle back.
For now please pray that Julia continues to improve and we can get out of here soon. The lack of privacy, the constant pumps beeping, the every 4 hour vitals, the pathetic shower, everything about being in here is driving me crazy.
I will continue to keep you all posted on Julia's progress and hope that my next post will be a better one.