The results of the cultures have come back in a confusing blur. There are 7 total ports and 2 types of cultures done on each port every other day. The results never quite come back as ordered. For example, the nurse will correctly label and send as: left PICC brown port, left PICC white port but lab may note as left Hickman red port with growth, left femoral no growth or something like that, so it is hard to tell what is what in the end. Everything has pretty much come back positive so it has been a moot point, but it seems that one of the white ports may have not grown out this last time.
Meanwhile, Elle has developed a pretty advanced pressure ulcer under her head gear despite frequent repositioning. It was an area that was covered for days at a time and so was difficult to assess. We all feel TERRIBLE about it though. It has taken me 3 days to even be able to post about it. I am sick about it really. Her skin in general has started to break down so easily lately. Her legs, elbows, wrists, neck, shoulders. I don't know what happened, but she tears if you look at her too hard. She had been significantly improving in that regard so I hope this is a fluke. Oh and our my search for a gel type pillow, have come across the Z flow though PT/OT/NICU. One is on order and hopefully will get that soon. The unit assistant today brought the warming type in for temporary use. While we await the arrival of the Z flow, we have fashioned the warming pad under her body and just do not activate the heat . It's worth a try.
Dr. Tolar visited with us today (now yesterday) and actually suggested the Posaconazole and may want to get Elle to the point of receiving more meds by G-Tube too. He is batting around ideas and is so not giving up. I love him for that! Elle had her eyes open clear and bright when he arrived and soon after, closed them. As soon as he left she popped them open again -I think she was pretending to be asleep because she knew he was talking about her! He is going to do her 4 week biopsy at 8AM. I'm not looking forward to that, but am looking forward to the results.
Later, she was trying to go to sleep but kind of fought it. She kept looking at me and when I touched her as I have described before, she would close her eyes. Then she got pretty sleepy, but would open her eyes, see me, and close them again. She did this a few times before she finally stayed asleep. I think she wanted to make sure I was still there. She has never been alone, ever in her ten months for more than a few minutes. Someone has always been so close by that she could touch, see, or hear them. She likely does not want to feel alone and I don't blame her one bit, bless her heart. I love seeing her bright eyes again. She just melts us completely. It makes me and her dad never want to leave her although we are both in the family area right now.
Elle had a nice visit from Stacy, a medical student who bonded with Elle during her BMT/Hemoc rotation. I'm sure Elle recognized her voice.We got to meet her husband too and their new baby is sooo cute! We have seen some really wonderful pictures of him.
Chloe is doing just fine too. Grandpa kept her active today and they had fun. She didn't ask about us much today even though we were gone all day so that makes me feel good knowing that she was not missing us. I did pick out a video with her, yes a VHS video and we watched part of it before bed (Cinderella). She really keeps us going. She is so sweet, imaginative, silly, intuitive, bratty, funny, intelligent, and ALIVE. She is very special. We're not biased at all of course.
|Dancing during Wii|
|Making spooky cupcakes at RMH with grandpa|
|Fruit of her culinary efforts|