Shopping List

On Monday we saw Dr. Landi  and got the pre-op stuff  done for the lumbar puncture that was scheduled for today. His lumbar puncture was planned to be done under anesthesia in the OR. 

The team felt that in general his spine and case were too complex to do the tap with out putting him out.   (I totally agreed with this, the kid is fidgety, and the last thing he needs is to be fidgety with a needle in his back.)   Plus, I figured he would get a good nap, since the steroids keep him up most nights.  

Dr. Landi said he had quite the shopping list from CHOP of testing that they suggested  to be done with his CSF.   Shop away, shop away.  Answers are needed.

It was also decided that day, to start weaning his steroids, and a plan was made to be completely off of them by September 14th.  While they were a necessary evil and they did some good, they also did their share of bad.

The side effects, are just a big UGGGGHHHHH for him.  The constant hunger, the weight gain, the acne, no sleep and the list goes on.  He is ready to feel better, and it goes without saying that we all want that for him.  Because of the steroids he now has a condition called Cushings syndrome.  Most of the side effects that associated with the Cushings should resolve slowly after he is weaned off of them.  He unfortunately, has developed the deep purple stretch marks that are common with Cushings, and he will always have those as a reminder of his latest "gig" at Duke. 

Being 16, he may not get that scars tell a story, and being able to tell the story is way more important than how they look.  

Braeden also had Covid testing done on Monday.  I am happy to report that his test was negative.  He had to have a negative result for his "procedure".   He also reports that the actual "swabbing" wasn't that bad, and that NO, it didn't go up to his brain, lol.

Today was a fairly long day for Braeden.  We left home this morning at 8:30 and got home this evening around 8:15.  I think they need to put us on the payroll.  

In true #MrUnlucky fashion, the LP should have only taken 10 minutes or so, after he was prepped and "knocked out".  Of course, with his luck this didn't happen, he was under for almost two hours.   It took five different doctors to try to get his sample.  The doctors started with a 3.5 inch needle, and ended up having to use a 5 inch needle to obtain the sample. (Blame the steroids for making this so difficult) OUCH, is all I can say.  They were able to finally get about 16 ccs of CSF from him. Most patients only have 2 to 3 ccs  of CSF drawn from their spines.  His sample was larger than most, because of his "shopping list" and all the different testing that is ordered.  

We will not get the results of most of the autoimmune disease markers for weeks.  We will get the cytology results in about 72 hours, that will rule in or rule out Lymphoma or Leukemia.

After his LP adventure, we headed upstairs for his first IVIG infusion.   We go back tomorrow for another IVIG infusion and an Avastin infusion.  In the future, the IVIG can be given in one day.  Today and tomorrow are considered the "loading" doses and they want to ensure he tolerates it well.  The IVIG took about 3 and 1/2 hours to infuse.  Braeden was tired, and hurting during the infusion.  When we got home, he went to bed after he ate and has been sleeping ever since.   

I sure do hope that his full day of "work" will provide the answers that are needed to get Braeden back to being Braeden.

Thank you all for the love and prayers.

#BraedenBrave

#MrUnlucky