Hospital Triple-Play
It's late, just after 3AM, and we can barely keep our eyes open. After a very long day we had to return to MSKCC Urgent Care around 10PM tonight, only to wait for hours on end before our room was ready. Don't worry, Ty is fine. Unfortunately his bloodwork showed that the dosing on his antibiotics is way too high and it may be dangerous so we had to return to the hospital for at least 24 - 48 hours in order to sort this out.
Vancomycin, the antibiotic he has been on many, many, many times, needs to be at a safe, therapeutic level when it is administered. The way they ensure this is by checking the levels in his blood periodically. For whatever reason, Ty's routine bloodwork that was drawn during radiation therapy this morning showed that the levels were twice as high as they should be and therefore dangerous to his kidneys. Our nurse called to break the news to us about 10 minutes before we pulled into our driveway after what already seemed like a long day.
Since the levels were so inexplicably high, the nurse was convinced that the bloodwork was probably contaminated (meaning, perhaps some pure vancomycin had been pooling in his mediport so when they drew back a blood sample it seemed much more concentrated). Well, we certainly didn't want to drive all the way back to the city just to confirm such an error, so we went to work trying to find a facility near our home that could do the labwork at exactly the right time and get the results within an hour so we wouldn't miss a dose. It was frantic and totally frustrating. Quest Labs… Labcore… people don't actually answer the phones at ANY of these facilities! It was driving me so crazy, we ended up getting it done at our tiny, local hospital and it was actually very easy. We were in and out, and sure that everything was fine.
Not such a happy hour on this Friday night
I don't know what we were thinking. After we came home from hospital #2 we settled down on our comfy couch, heated up some pizza, cracked open a beer and talked about the relaxing weekend we had ahead of us. What fools we were! We always get so mad when our doctors are surprised by Ty, so I guess we jinxed ourselves and ended up being thrown off guard ourselves when we got the call tonight. It wasn't a fluke… Ty's antibiotics are running dangerously high and we had to return to the hospital for the third time today, this time overnight.
I took my time and read Gavin a couple of extra bedtime stories tonight. I hugged him extra tight and kissed him twice as much. I am just so sad about being robbed of all this time with that incredible baby boy. I hate the thought of him waking up tomorrow morning to find me gone again. He's such a good boy and I miss him so much.
It also breaks my heart to bring Ty back inpatient. We left at 5:30 this morning for hospital trip #1, returned home at 1PM, left for hospital #2 at 2:30PM, returned home around 5PM and left for hospital trip #3 at 9PM. He is not taking it very well. We have already had a really tough time trying to help him adjust to being home and trying to rid him of his fears and insecurities. Just when we start making progress and he was accepting the daily trips for radiation we are back inpatient. ARGH! Poor little man. We also have the smallest room, most overcrowded room on the floor. Lou and I are so wiped out, I just want to crash until tomorrow afternoon. If I can't be doing what I want to be doing, at least let me catch up on some sleep! (yeah, right, as if Ty would EVER allow that!). Oh well. Looking forward to Wednesday. As long as he keeps getting better, I will continue to try and take all of this in stride. Each step gets us closer to the day we can put all of this behind us.
XOXO - SuperTy
Oh geez!!! Can you guys get a break already!! Yo God; as my daughter says: COME OOOnnnn! Please please give them a break already I think it's about time!!!!!!!! Love n prayers! Love the hat and those beautiful eyes TY!!
ReplyDeleteYou've got to be kidding! (although I know unfortunately you are not). When I read your posts like this one I feel myself getting frustrated and angry...I imagine what it is like for you and I know my anger and frustration is less than a billionth compared to what you feel. I don't know if you get tired of hearing it but your strength is unbelievable. I don't know if maybe you don't feel strong at times but you are strong beyond words. It puts my petty crap into such perspective. I pray the day you can put this behind you is closer than you think. More healing thoughts for Ty.
ReplyDeleteCindy,
ReplyDeleteI am screaming for you.... Keep up that ROAAAARRRRRRRRRRR!!!!!
You are a strong mama who is doing the right thing for her baby cub!
STICK with the FIGHT!
You got this!!!!!! Hang in there.
Thinking of you always.
Love,
Janine
Praying, praying, praying. And I'm finding an incredible number of pennies, which someone once told me means that God is listening! Just get through this however you can... Airplane bottles of vodka stashed in your purse? :)
ReplyDeleteHow fair is it when too much of a good thing can be bad, I still can’t figure this out especially when it comes to chocolate. The good thing is that they can control the meds and this is not that serious (in comparison) to a lot of other things that you have had to face here recently.
ReplyDeleteLittle Gavin… poor baby I am sure he misses his mommy and big bro. What is so bad about it is that he can’t really understand at this point. :0( It will be better though, Ty will be better and they will have long lives to love and get on each other’s nerves :)
Hopefully little man can go home for the rest of the weekend :O)
Love yall,
Mary E. King and the rest of the King family
GA
Praying and wishing for peace and some healing rest for the entire Campbell family.
ReplyDeleteFeeling dizzy from all that runing around.
ReplyDeleteWhat matters is that you are doing the right thing for Ty. It is good that all on board are keeping track of his health an monitoring every detail.
Christian and I just got back from visiting Quique (nephew) who has Chrone's Disease. THis year the third time of a flare operation and hospital. He was dehydrated, so back he went.
So in this Holy Week, we are all praying for a miracle.
Thanks for keeping us posted. Rest in pieces, to make a whole.
We love you and send you ALL our love, faith and peace.
Remember:
Perseverance is not a long race; it is many short races one after the other.
Walter Elliot
All life is an experiment. The more experiments you make the better.
Ralph Waldo Emerson
Do not be anxious about tomorrow, for tomorrow will be anxious for itself. Let the day's own trouble be sufficient for the day.
Samuel Butler
Rosalyn, have your nephews parents look into purple rice. My friend was recently diagnosed with the same thing plus c.diff for the added fun and this seems to be calming things down; she even went back to work. Long story...my brother almost died when we were kids and the docs were pumping him with antibiotics and basically killing him. They did not realize that he had a yeast infection in his stomach n colon. He was down to forty pounds at 12 yrs old and we were told he had cancer and wouldnt make it. My dad a UPS man met a nutritionist named Barbara Mulgrum (she presently lives in southjersey) said to get him off the antibiotics and take acidophalus and some other probiotic and within two weeks he gained forty pounds. The docs were shocked and clueless (this was in the 80s). So since she was the only one who could help my brother I decided to contact her for my friend and she said purple rice from Thailand. She takes it everyday in a hot water drink and IT WORKS. She said it heals on a cellular level. My friend finally got off the nasty steroids, stopped bleeding and can enjoy her one year old. Anyway I can give you her email if your interested it's on my home computer.
ReplyDeleteI'm so sorry he had to go back so many times and I'm praying hard this lessens and he will have a stress-free time on Easter at HOME with all of his loving family. Positive energy and much love going out to Ty, his team of doctors, you and Lou.. Stay Strong xoxoxo
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