Tuesday, May 11, 2010

Infusion Day 1

24 hours- the Abridged Version

12:00 Am Blood Sugar Check and vitals. 182. Coming down. T is sleeping. Working on blog knowing I should be sleeping. Fake chair bed isn't looking all that inviting.

1:30 Lay down on parental torture device(PTD) also known as chair bed. Finally drift off into semi sleep and dream about the frogs at my parent's pond keeping my Dad up. I know weird!

2:00 Blood sugar check and vitals. T sleeps through- how I don't know, but he does. 136. Much better. Drift in and out of sleep.

4:00 You guessed it- blood sugar check. 117. Leave him alone knowing that he always creeps up a bit between 4-7 am. T slept through-again!

6:00 Time for lab draw for clinical trial. Took about 6 vials of blood. Got lucky- no finger poke this time. Blood sugar 137. See, told you he goes up a bit every morning. Usually he is 120-130.
Full set vitals. T wakes up this time. We both lay back down, knowing that the next time he wakes up it will be time to start the infusion. We just have to wait for the labs to come back.

8:30 Nurse comes in to premedicate T with tylenol, benadryll and prednisone (steriod)/placebo. I wipe the drool off my cheek hoping he doesn't notice. The print imprinted on my face from the PTD is a little more conspicuous. T takes the pre-meds and orders breakfast. I attempt to become presentable and go get COFFEE.

9:00 Blood sugar check (117), carb count, insulin and T eats breakfast.

10:00 Labs are back and it's infusion time. The bags are hung and connected to the PICC line. This is really it. T is optimistic and a little apprehensive. I am a jumble of emotions and find myself holding back tears. Not really sure what to feel. Dr. Gittelman is here and we chat for awhile. I like him. So does T.

10:15 Full Set of vitals. For the first 8 hours of the infusion a full set of vitals are taken every fifteen minutes. I will spare you all posting that every fifteen minutes. T had his own exclusive nurse named Grady today. He was awesome and took great care of T. He was here like clock work and at our beck and call. Awesome.

10:45:T announces he has headache. More tylenol and ibuprofen. Blood sugar check. 266. Hhhmmm. Dr. Gittelman comes in to check on T and does full exam. More talking. I like that he completely includes me and my opinion about meds and management.

11:45 T feels "funny". Blood sugar check-346. Order lunch. Lunch arrives, carb count, insulin with correction, and eat. Headache is still there. Dr Gittelman again.

1:00 Diabetes educator comes by. She is awesome and has type 1 herself. She gets it. We REALLY like her. We chat for a long time.

2:00 Dietitian comes in. Sort of redundant but a very nice woman. We chat awhile. More tylenol, T still has headache. Still doing full vitals every fifteen minutes.

3:00 Hospital teacher comes by, T is not really feeling up to work or going to the classroom. I can see just how disappointed he is to not do homework. (I can't figure out how to write in sarcasm yet) T is feeling disappointed, starting to doubt he received thymo. We chat. I still think it is too soon to know. Blood sugar check-can't remember. It was over 300 and T can sure feel it.More ibuprofen for headache.

4:30ish T has changed. He is not quite as chipper. Flushed. Headache is increasing. Fever. Chills. Achy. Overall starting to feel pretty crappy quite suddenly. Dr. Gittelman came right in and we started going over options. Hooked T up to EKG machine and oxygen sensor as a precaution. Full physical assessment. Decided on demerol, the other option being steroids. Sugars are still in 300+ range. Decide to change insulin ratios and correct more often.

5:00 Nausea. Zofran (anti nausea drug) Going to have to postpone dinner a little while.

7:00 T is laughing hysterically and a little too loudly at America's Funniest Home Videos. Safe to say he is feeling better. Sam arrives with dinner and COFFEE. He is my hero. T checks blood sugar, 206, carb counts, insulin with correction and eats.

8:30 Dancing With the Stars and hanging out. T is feeling better but highly medicated. He will continue to receive tylenol, ibuprofen and benadryll on a rotating schedule from here on out. Text back and forth with C. I miss him and L. I am so grateful my mom is there to make this easier on them. My parents have been amazing support for our family. Not sure what we would do without them.

9:00 T's skin is hyper sensitive and feels strange to him. No rash. Change dressing on PICC line and another blood sugar check. More vitals. I shower because I am embarrassed to be in public anymore and because I want the nurses to like me- not smell me. I almost feel like a human again when finished.

10:24 First infusion officially ends. T will be closely monitored tonight. Hoping for an uneventful night. Side effects seem managed at the moment. Hoping he can get some sleep.

Blood sugar checks and corrections will happen every three hours tonight and vitals, temp, etc every hour.

Infusion starts again tomorrow morning. Todays infusion was set for 12 hours. Tomorrow he will receive the same amount in eight hours. We will take it one minute at a time. While T is feeling confident he received thymo, I am still cautiously optimistic. Honestly, sometimes I don't know what to wish for. Thanks for all the love, we can feel it.


  1. WOWWWY WOW WOW!!! AWESOME post dear friend. I feel like I am there with you. Love that you call the chair a PTD (soooo truuuuuuuueeeee). I hate those chairs. I used to be a nurse in a Pediatric and Surgical ICU...none of those chairs or beds ever seemed that comfy for the parents...and unfortunately I found out personally when Joe was diagnosed with type 1.

    Cannot wait for your next update friend!

  2. PTD's indeed! I remember trying to sleep on those when Mags was in the hospital when dxd with T1. Between the PTD and the in and out for vitals checks, almost impossible to get any real sleep...I feel for you.

    I am amazed at how brave Tanner is and hope that today is a bit easier on him, and you.

    Prayers continue!

  3. When my husband got his chemo last year, (And I know it isn't the same thing) BUT his first symptoms were chills and fever, and nausea.

    He so got it.

    Love you friend! ((Give T a big hug from all of the families he is helping.)) That is gonna have to be one big hug. :)


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