7/13 A few days post biopsy

 Bri’s a few days into recovery now. Neuro & Endocrine both let her discharge from Children’s on Saturday which surprised the heck out of me. I knew the baton was now passed to me to be solo caregiver. Honestly I would’ve done anything to escape the 6 hour blood draws though. The poor nurse had to clean and apply medicine to her incision before we left. That was profoundly hard to watch. The incision was cleaned twice with peroxide, it bubbled the entire area up and melted the scabs off of her head. It set Bri on fire … I know it was so painful. 

It was a little overwhelming coming home with a very fragile, angry 6 yr old but we were both so relieved. We both fell asleep on the couch almost immediately. I let her be the rest of the day and night. I know she was in pain and irritable but refused any medication. Sunday was a little rough but she saw family, took her medication, and got a shower/bath. I was able to run some water over her incision and wash her hair but nothing more. I have had the worry of infection weighing on my mind. 

Monday - I noticed her perk up a little more today. I took a few pictures this morning and told her to smile, but she said smiling hurt her head. Her incision is gnarly, but healing nicely. We’re at the point now where it’s getting tough to keep her still… she’s active and restless. She wouldn’t take any meds again today but assured me that she felt good… specifically her words were “mom why would I take medicine if I don’t need it”. 

Left to my devices, when Bri is asleep, I scour the internet researching germinoma and LCH. Her neurosurgeon said that the biggest concern is that he didn’t get a big enough sample and would have to do the procedure again. Regardless of what we hear from doctors this week - it’s not going to be good news. Once again I have to ignore the inevitable for now and concentrate on her recovery. 

I am completely enamored by Brielle’s resiliency and strength. I will update after I receive word from the doctors.

Much love -Christi

Biopsy Day 7/9

 Where do I start. Lol. Bri is finally asleep so I’m able to gather my thoughts and reflect back on the day. Bri actually woke me up this morning before my 3am alarm, ready to go. I was dumbfounded at how good of a mood she was in and energy for days. It made me second guess my decision once again - literally while on the way to the children’s. 

The entire morning went according to plan .. no hiccups.  We got to see the surgeon right before and right after her biopsy. Everything went best case scenario, minimal bleeding, a few stitches, no drains. Happy is an understatement.  Her surgeon said he could clearly see the abnormality and was able to get 2 samples and get out.

Whenever we got to finally see her in PACU she was coming out of anesthesia. The incision is directly on the top of her head just to the right. Barely even noticeable. Bri has a weird reaction when she wakes up from anesthesia…she gets super angry, like Hulk angry (it’s common in kids).  She had that reaction today in recovery. I think the shock of that, and the day, and not eating - I almost passed out with all of the commotion and had to sit down. The wonderful nurse gave her fentanyl to calm her down. Luckily we got up to a room pretty quickly after that.

They are doing blood draws again every 6 hours for sodium checks. She has already said several times she is ready to go home. Yea, trust me, me too girl.  If Endocrine doesn’t keep her tomorrow I THINK we may get discharged. I can’t tell you how fascinated I am with this entire experience today. I’m certain we couldn’t get a better neurosurgeon than Dr Swift.  He is a genius. Also, I knew Bri was strong, but DAMN this is up there with unbelievable. I asked her if she was a superhero. There will definitely be some recovery at home so I hope I’m equipped for Bri’s powers that be.  

We will know results in 3 business days.  So, alas we wait again.  

I’m out for the day -Christi 

7/8 The day before biopsy

 The last 24 hours have been a roller coaster of emotions.  Bri had her pre-op yesterday and lab work which she handled pretty well.  The PA just went over a few things but left the hard questions for me to ask the surgeon tomorrow morning.  They sent us home with an antiseptic soap to wash her hair with tonight AND in the morning.  Yay (sarcasm).  I’ve been researching complications with the procedure and many are associated with infection.  So… I’ve been washing and cleaning like an absolute crazy person. 

We’re supposed to be there by 5AM, meet with her surgeon ~6:30, and her procedure is scheduled for 7:30.  I specifically asked the PA if she would have drains, and she will from her head.  BUT she said they wouldn’t send her home with them.  Even with nurse education, I’m not sure I could handle that.  They will have to shave a bit of her hair which is honestly the least of my worries - but the PA said that it wouldn’t be a lot.  

I received her labs back already today and her anion gap levels were low.  This could mean a number of things.  I do plan on bringing that one up tomorrow.  Everything else looked good.  The procedure should last around 1-2 hours according to the surgeon.  They have to do another scan and some other things before, so I’m preparing for at least 4 hours of torture in the waiting room.  

I am currently a walking panic attack so I predict I will be pretty scattered for the next few days.  My to-do list is overflowing but my spirits are high.  Bri has been completely normal, she is aware of everything that is going to happen.  She seems completely unbothered.  She did like the idea of “goofy juice” tomorrow morning to keep her calm.  Should be interesting to hear what comes out of her mouth.

I will post an update tomorrow when I can.

Much love -Christi