Tuesday, April 2, 2013

The Sandman Needs to be Fired

Hello Everyone!

Today is day +11, Tom is still at 0.1 WBC but that's still better than being at 0.0 which is what seemed expected.  He has had a couple of looooooooong nights.  Sunday night Tom was up in extreme pain about every hour asking for meds or something to help because the sores in his throat were so bad he couldn't swallow his own saliva without nearly being in tears. 

This continued through the day yesterday and he was super tired due to the lack of sleep over the night.  He was not able to eat much, he managed some Ambrosia custard (about half of a can/"tin" for those in the UK).  He has one of those dentist suction tubes to use so that he doesn't have to swallow, just to paint the picture of how much his poor throat is hurting.  Also, Sunday night he started with a low grade fever and eventually progressed over 101F, so they took blood cultures and began the broad spectrum antibiotics.

Tom's had all of his meds that can be switched to IV, switched to IV form.  Last night the fever came back on a bit, he was feeling terrible, had been utilizing pain meds all day long to ease his throat... and last night he just simply went to sit up to call the nurse for more pain meds and began vomiting as well. This continued all night.  Of course he hadn't eaten anything (but that custard), so there wasn't much substance to follow, but the poor guy kept being sick.  So night two of no sleep. 

They said this morning that apparently with his pain med dose having been upped (doubled, in fact for the dilaudid), that having it more frequently and more quantity, his nausea could be coming from that.  So, this morning Tom decided to quit the pain meds.  He is literally having to trade one thing for another it seems. 

We tried staying awake as much as possible today so that he might sleep tonight, but he is just so run down! It's exhausting being in pain, very tiring being sick, and I'd imagine his body must be completely shattered trying to produce a new immune system!  So there's that.  He has been fever free since early this morning and we haven't had any further vomiting occur since early this morning either.  With any luck, we may have a doable night. If not, seriously... the sandman needs to be fired because he is failing miserably at getting Tom some sleep (and myself included by default). 

His cultures have come back gram positive which leads to a specific family of bacteria (e. coli, vre, staph, strep, etc).  The cultures haven't grown quite enough to be 100% certain, but the doctor says he can say with pretty good certainty that it looks to be strep, which makes sense given his throat/mouth sores.  Good news is, unlike some of the others, strep responds well to the antibiotics which is most likely why he didn't have the fever as long as he has with past infections. Still painful and annoying for Tom.

Side note: his hair is falling out in rather large quantities, today I looked at him and half of his mustache was missing, literally. We had a good laugh.

In other news, we were literally on the news tonight!  Thanks to our friend Lauren who had the connection so to speak, yesterday a reporter came down and interviewed me (Tom was supposed to be involved but felt like he'd been hit by a freight train... and couldn't talk, so I assume the interview process would not have worked).  You can watch it online here: KHSL Video .  Thank you Michelle for taking the time to come down to Sacramento and put together our story. We super appreciate it.

Tom's Blog Input:
Tom would like everyone to know he feels sorry for people who have mouth sores a lot. He says he's in complete agony and really struggling right now.  He's hoping for 0.2 white blood cells to register in tomorrow (the doctor says he's hoping for maybe 0.3).

Fundraiser Dinner!
This Saturday is the Fundraiser at Woodson Park in Corning!!! 4-8pm!  We have a lot going on: music, photo booth, silent auction, raffle, bbq chicken & tri-tip dinner, and tons of fun! The auction and raffle will be full of awesome goodies! We have an Oakley sunglasses basket, Mary Kay basket, Lucero Olive Oil and New Clairvaux Wine basket, Starbucks gift basket, Restaurant vouchers, bowling gift certificates, hair gift certificates, seriously we are loaded with goodies!!! Tickets are $10 for adult, $5 for children. We will even have a drive-thru service for four (2 adults, 2 kids) for $25 for those who can't stay.  So mark your calendars and please share with everyone! Tickets for the dinner may be purchased in advance at City Hall, Prime Cut Hair Design, Rancho Grande, or at the "door" the day of the event. Hope to see you there!

Also we will be having t-shirts available to purchase! Men and Women's. We have women's sizes s-xl and men's sizes s-xxl.  One shirt for $25 and two for $40!  The Yorkshire Rose on the front is the symbol of where Tom is from and the back reads, "Team Tom 03.22.12" which is his transplant date/"Second birthday". The actual shirts will be a light gray color rather than black.  Ignore the red writing as it's just the dimensions of the print/rose. 

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