St Jude – Cold and Tired

I seem to get all the good luck when it comes to spending the night at St. Jude.  Maybe I am a drama queen about it?  Maybe I do not storm into the nurse’s station as much as Angela would to “advocate”.  I don’t know… But I do know I seem to get the late night shifts. 

You can read my Facebook about the absolute details… Just know that Summers platelets were down again so they set her up for an 8 PM appointment.  We go there early and they didn’t get us in till 9:30.  Fortunately, they did not take more scans afterward to get more readings.  It was a one-and-done, so we were out at 11 PM.   While Summer was getting her platelets… She informed me that she had lost her knit hat.  Her favorite knit hat as a matter of fact.  She sent me out to look for it earlier and then again during the transfusion.  I was diligent to look in all the areas we had been to today.  But, in typical Summer fashion…  She didn’t believe me.  The nurse even offered to look in the waiting room if she didn’t trust her Dad!

Believe me… When you pull out enough chairs from the wall at a children’s hospital… You find all kinds of stuff.  Toys, Drinks, Medical things.  I found everything but her hat.  When we were leaving, the security guard insisted on giving Summer another hat before she walked out in the weather.  It was a homemade pink knit hat that was probably part of a donation program.  It was sealed and new, but obviously, handmade.  Summer would not let me take her pic in it because it was made for a smaller kid.  But it was a cute moment.

When we rolled out, Summer was tired from our 10-hour day at St. Jude and the weather was only adding aggravation.  Rain was falling, but it was turning to ice on everything it touched.  Thankfully, the pavement was still warm enough to be wet.  We drove carefully back to Target House.  The roads were slippery, but it seemed that everyone in Memphis got the memo…  The roads were empty of traffic.

Back at the apartment Summer wanted food!!!  She had me try to whip up a cup of instant Kraft Mac and Cheese.  I consider myself a decent cook for the most part… But I royally screwed this up somehow.  Mine was full of water and the noodles were not cooked after 3:30 in the microwave.  I followed the directions!!!  I don’t know what happened.  Summer, even in her weakened state, pushed me to the side and said she could do it herself!  After her 3 and half minutes…  Hers looked screwy as well.  She dumped out excess water and added the cheese and declared it edible.  I rewarmed up the first batch and suffered through it as we watched “The Climb” on HBO.  The irony is not lost on me…  Watching fit people tackle daunting challenges while we eat instant Kraft.

While I was sitting there dealing with the verbal abuse of not finding her hat… I made a post in the “St. Jude Families” Facebook group and posted a lost and found ad.  I do believe this is a first, I have never seen anyone else use that forum for something so trivial!  A few people said they would keep an eye out for it today when they were at the hospital.

Today we started earlier than Monday.  I skipped breakfast since I was still burping up Easy Mac and let Summer sleep till we were nearly late for appointments.  The roads were a lot worse than last night.  Cars were crawling and a Jeep was sideways and crumpled up with damage on our route back to the hospital.

At the security desk upon entry to St. Jude, I  stopped and looked at the lost and found.  Still no hat. 

We waited for a bit to get into the labs… But today’s problems with timely appointments came down to a lack of staff.  The icy conditions meant half the folks who would normally be helping were late or not coming in at all.  Actually, looking around the waiting rooms… There were not a lot of patients there either.  The place looked like we were there on a Saturday.  Very empty.

Once labs were done, we went over to Summer’s scheduled Lumbar Puncture (Spinal Tap) appointment.  We got there on time… But ended up waiting for an hour.  I swear it’s me!!!  I sat with Summer until the anesthesiologist said she was asleep.  Before that, they pressed and tried to negotiate her staying awake for the procedure.  Summer informed the nurse that the last time she tried this while awake, she felt and heard every bit of the needle in her spine and said she said she would rather NEVER do that again.

I was told I had an hour to spare while she was under the influence of midazolam.  I ran to grab some lunch.  Side salad and chicken wings were a decent choice for Hospital food.  While I was sitting solo, I saw a message in the St. Jude families group.  Another Dad took a picture of Summers hat in the “labs” nurses’ station.  Hmmmmm… I didn’t go to labs with Summer yesterday.  She insisted on going by herself!  A fact that I will use against her if need be.  Before I could run to get the hat, the nurse called from the LP.  Summer was up and ready to go.

We didn’t have much time to get out of the recovery area before we had to see Dr. Gajjar but Summer did want to get her hat.  Guilt for this whole missing hat situation ran off her back like a duck.  She would not show one sign of remorse.  Like I am surprised?

A few minutes later we got to E Clinic and went through all of our visits with Katie and the doctor filling in for Jamie while she is on leave.  (Sorry, I don’t remember her name).  Katie asked if we had looked at the MRI results.  I pulled up the MyChart yesterday but it was not written very clearly.  I gave up and was waiting for our visit with Gajjar. At that point, Dr. Gajjar came in and we had 2 seconds of conversation before he asked the same question.  Red flags were now popping in my head.  What’s up?

Doc and the whole team took us to the imaging room and pulled up all of Summer’s MRI results from our time at St. Jude.  Starting with June of 2022 to this most recent scan.  Doc pulled up yesterday’s scan and started talking about the findings the MRI tech mentioned in his report.  Specifically, a small spot he marked as something to watch in the future.  Dr. Gajjar pointed to two to other spots like this from her surgery at LeBonhuer.  He did say that it was something to watch… But nothing to freak out over at this time.   Additionally, pathology from her spinal tap today would probably not indicate any issues based on what he saw on the MRI.

Her next MRI in 2 months will definitely be when we start building our “Scanxiety”.  That sucks… But this is not unusual or uncommon.  Every scar or granule in her brain is going to be scrutinized going forward!

Summer did say when we were done with the results that she wants a picture of her MRI for a picture.  Creepy.  But she is certainly entitled to decorate her room with pictures of her brain!

We needed a wheelchair to get Summer to the car… She was still a little down from her LP and anesthesia.  Once she was home… She crawled into bed and did not want to move for the rest of the night.  I went down to get mail and snapped this picture of her all covered up.  (She didnt take her mask off to go to bed!)

Tomorrow… Everything has been canceled…  Since we got home today, the ice has been falling and coating everything.  Dinner was canceled at Target House and I suspect Memphis will be closed.  I REALLY wanted to knock down a beer tonight and was slightly upset that Joe’s Liquors on Poplar was closed when we passed by.  They sell individual craft beers and I was thinking one stout would have been nice on a cold crappy night.  But, instead, I will drink my Kay Cafe bottled water as we eat Hamburger Helper!  I’ll survive.

Summer can rest all day tomorrow if she chooses to.  Oh, she still has some homework to do!!!

There is a great chance that Summer is able to get to Carbondale on Friday if her platelets hold steady.  Thursday morning she will get another blood test and that will tell us if she is free to leave till next week.