As of Monday morning we are back in our old room in 1 North (Oncology). Brooke and Clara didn't get kicked out of their neuro room (luckily) but Clara did decide to wake up for the day at 3am. Brooke has been having trouble sleeping as Clara is being very fussy. Something like this happened after her long stint in the PICU under sedation last time and we are wondering if this time is similar (she has had a ton of general anethesia). Tonight seemed to go better with Clara going to bed at 7 and sleeping fairly well. The sleep is still broken enough that I stayed until 1:30am to ensure that Brooke got some good continuous sleep.
We have confirmation that the infections both in her chest and in her brain are in fact fungal. They are still not sure which fungus but they say that it is growing in a manner consistent with aspergillus. As a next-gen sequencer type of guy I say they should just spend $200 and sequence the whole genome (ok, maybe they could just PCR up some ribosomal DNA) to figure out what the organism is. Why they have to do these biochemical assays that take so long is beyond me.
The MRI of her brain after surgery showed that everything looks great and that there are no remnants of the infection. I will have to get some copies of the MRIs to post on here. Next we will be tackling the infection in her chest with some aggressive procedures to speed her toward transplant (possibly removing a lobe of her lung).
6 comments:
Glad that they made back to "home" base. Will keeping hoping for good sleep and quick recovery for you guys. Read up on aspergillus - glad they are being aggressive (although removal of a lobe of lung sounds very, shall we say... icky!). Keeping all positive thoughts going your way that you all can move quickly past this and into transplant. Love you 3 dearly!
auntie S.
Yay for Home Room! At least it feels familiar and like 'yours'. I remember the days after PICU and a wide awake Clara. We didn't know how that baby could go without sleep for so long. Don't remember how long it lasted, but when she did finally sleep, she was out hard. Maybe she will adjust soon being back in 'her bedroom'.
Loving you and missing our talks. Maybe a visit tonight?
XOXOXO (That's one of each for each of you)
Did Alan just throw a title at them? Because all I heard in some of that is, "I'm a Dr. you should do it this way." Go get em Alan! Maybe they need some advice.
Alan, I couldn't have said it better myself! :-) So glad you're back "Home" and moving towards transplant soon!! Yea!
If I choose to donate $200 to leukemia I want it to go towards whatever you're talking about. As a non DNA sequencing type of woman I know how important that stuff is because my brother in law does that and he's a genius.
Can I write you a check?
Just a thought related to Clara's altered sleep habits...sometimes this level of awakeness is secondary to sedation meds being weaned a bit quickly. Keep up the good work guys.
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