Thursday, May 13, 2010

Infusion Day 2

Unabridged Version.

2am-8am Sugars are in the 300-400 range. Continually chasing highs with ever increasing insulin.

8am Blood draw for study.

10:30 Premeds of tylenol, benadryll, long talk with Dr. G about insulin overhaul and stacking insulin crash course for T and I. Super good info.

11:25 Diabetes educator Jeanne arrives bearing gifts- a free ketone meter WITH strips. Score! Have I mentioned that we love her?! T and I also try pump sets for delivering insulin from an insulin pump. T tries the stainless steel Sure T and I try the Silhouette. We both like our choices. I feel better knowing how it feels and T thinks that the Sure T will work well for him.

12:04 Main event begins. Thymo/placebo infusion begins. Completely uneventful. Vitals every 15 minutes begin. Grady the Superman nurse is back on. He rocks.

1:15 Very sweet nursing student comes in to take T's vitals. She is looks like she is about 12. A Hannah Montana commercial comes on and she says, "OMG, I totally love this show, it's my favorite! I watch all the time.", completing confirming my previous age guess. Reassuring-not so much! So glad for my own experience and Grady's back up.

3:00 Blood sugar 386, 6 units of insulin. T has a headache. C, L and Grandma arrive for much needed visit and snuggle time. Great distraction.

5:00 T is tired, flushed, headache, Blood sugar 492. Not cool. Ordered dinner. 17 units lantus insulin.

5:45 Dinner arrives. 25 units of insulin for correction and food coverage. Not gonna lie- freaks me out a bit. T is feeling crappy but ok. Hungry.

7:00ish C,L and Grandma head for home. They miss Sam arriving with food and coffee by minutes. Nurse shift change. Cheryl is our slave (ERR I mean nurse).

8:15 We start Princess Bride because our good friend Meri says it is the funniest movie ever and we could use a good laugh.

7:45 T says,"Mom my PICC line hurts. It hurts a lot. Into my arm pit and shooting pains down my arm." Call the nurse. Explain. Worry about blood clot. Call attending physician. Check vitals and temp. Vitals ok temp is 99. Worry about administering drugs into potential clotted PICC line, knowing that the chances of it being clotted are really rare.

7:55 Check PICC line and it is fine. T says, "Now my heel hurts, now my other calf, my back." Vitals, temp and realize we are dealing with thymo. The infusion finishes at 8:05. The side effects have hit T like a freight train of swine flu, bird flu and every other crappy virus on the planet. Temp is 103. 4 degrees in 10 minutes. Nurses frantically getting drugs. Demerol, benadryll and ibuprofen. I request zofran knowing that the demerol made him nauseous. Rigors, fever, severe body aches. Get the demerol and benadryll onboard. And then our favorite crappola side effect vomiting joins the thymo-wreaking-havoc party. The zofran just wasn't in time. Because of nausea, T couldn't take ibuprofen to help alleviate symptoms. Everything happened so fast. The staff worked really hard to help out and get things under control. Unfortunately, when things fall apart that fast catching up to the symptoms takes time and is more challenging.
I have never seen T this miserable. DKA looked like a mild cold. T was never in danger as far as his safety like during DKA, his vitals were stable and EKG was fine. He just felt the WORST he has ever felt. I spoke with Dr G at 10 to weigh our options. Trial protocol requires an administration of steroids/placebo (at this point who am I kidding-steroids!) at 12 hours after the beginning of the infusion. Steroids would greatly eliminate the side effects. I hated to give him a dose at ten and then have to dose him again because of protocol 2 hours later. That said, I was ready to do ANYTHING to make him feel better. This was too much to ask. I had been wracking my brain and asked Dr. G about a drug called toradol (sp?), it is an NSAID like ibuprofen but can be administered by IV. I agreed to the steroids and asked for the toradol as well.

10:40 T has had a change for the better. He is able to talk again a little and even managed to smile. He is so strong. I can't even describe how incredibly impressed his family and the staff here are with him. We get the toradol on board. Vomiting still. Blood sugar has gone from 480 to 150. Remember the 25 units of insulin on board. Not cool. Decide to hold off on steroids hoping toradol saves the day. Toradol just maybe T's new BFF.

12:04 Steroids. T still feeling crappy. Went from a 9 (scale 1-10) to a 7. I would sure hate to see his ten. Blood sugar 115- nausea subsided enough we decide to have him eat 2 licorice sticks- 20 carbs.

2:00 T finally has some relief and feels much better. Sleep.

3:00 Blood sugar389. Hello steroids.

The worst should be behind T. Typically the first two days are the hardest. Most people do better with the third and fourth day infusions. We will be even more diligent today as infusion day 3 progresses. Now that we know how symptoms can sneak up from nowhere we will be premedicating with bigger guns sooner.

T and I spoke this morning-I reminded him that this was voluntary and at any point he could unvolunteer with our full support and admiration. He looked at me and grinned' "Are you crazy Mom? I'm half way through- I'm going all the way." I knew what he would say before I asked.


  1. Ok you have me crying. My husband wen't through all of this last year...and he said that your son is his hero. It is a rough road...he is a rock star for sure!! As soon as the infusions stopped, he felt better the next day...I pray for that for T.

    Can I do anything? Can I bring you anything? Is today, Thursday, the last infusion? Continued prayers coming your way!

  2. OMGsh...I have a new hero. Your sweet T is amazing -- and he's doing this to advance research. I'm so proud of him. SO INCREDIBLY PROUD OF HIM!!!!!!!!!!!

    Hug that kiddo of yours and tell him we're praying for his comfort. What a journey. WHAT AN AMAZING JOURNEY!!!!!!!!!!

  3. WOW - I am crying and praying and thinking and just WOW! What a brave young man! WOW. I really admire you all for doing this - - - what an amazing journey. (I think Wendy just said that :) too)

  4. You're amazing tanner and April. I can't imagine the roller coaster you've been on. We're so proud of you! You're desire to get a handle on this is aspiring. can I call u? Our prayers and thoughts r with u. Hugs and kisses! R and A

  5. AWWW - LOVE his attitude!!!


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