Monday, May 10, 2010

UCSF Is a City

So here we are, Day 1 down.

Our day went something like this. 24 hour version

Finished packing and bookwork at 1 a.m. Climb in bed exhausted.

2:30 am Crazy dream that if I shared here might result in many of you no longer following my blog and possibly to stop associating with me. I will spare you the details.

3:30 am Blood sugar check. 145 Sleep.

5:30 Dog and husband snoring and I have no covers.

6:00 Why bother?! COFFEE! Got up and finished packing and food preparation.

6:30 T is up and showering.

7:00 Blood Sugar, carb count, insulin, breakfast. C up and getting ready for school and the big track meet.

8:00 COFFEE and hitting the road. Traffic.

9:25 Minor freak out in claustrophobic, scary parking garage. Driving around in garage made for mini-coopers in a suburban in circles. Realize I might have had too much coffee. Found a spot on the pink floor by #71. Accidentally go down in the elevator and should have gone up. Go up and get out of elevator and walk down some stairs to get on another elevator to go down to street level. Yes, it is designed that way and no, there are no signs. I need GPS to get out of the parking garage. T is cool and calm; me, not so much I'm but I'm pretending to be.

9:30 Bathroom and yep- you guessed it- COFFEE. 'Cause I am just not quite wound up enough.

9:45 Arrive

Follow our handy-dandy instructions perfectly through the maze of hallways to the appropriate set of elevators and up to the sixth floor. Check in with spunky woman at elevator and tell her that we are here for clinical trial. T doesn't exist in paperwork but she says that's ok- go ahead. Wind our way back through multiple hallways to the Pediatric Clinical Research Center. Check in with nurses. They know who T is and take us to our room. Cool. T is joking and making small talk with nurses. I'm feeling pretty good and kinda relieved. Weight, height, blood pressure, temp, questions. We even have a view.




10:15 Nurses realize that we didn't go to admitting. That was not on my handy-dandy instruction sheet. Apparently, they think you should just know that by osmosis or something. I don't learn that way- I learn by reading. So off to admitting. The nurses say as soon as you are done head back up here.


11:45 FINALLY done at admitting. Apparently- our room- that had all our stuff (except our food) in it "wasn't ready yet". So typical hospital. Paper work and hurry up and wait. Receive picture of C running in the pouring rain with huge grin on his face at his track meet.

12:00 Arrive at our room that is still full of our stuff that wasn't ready. Dr. Gittelman and clinical trial nurse come in for final consent form to be signed. All my "what if's" resurface. T is cool, calm and collected. T checks blood sugar 130.

1:00 Ask about ordering lunch. Told we need to wait because his orders for insulin haven't been made yet and diabetes nurse needs to go over insulin/carb ratio. Find out C's track meet had been rained out. :(

1:45 Insulin orders are now in and T can order his food. Gee thanks. Pick up phone to order food. It's dead. Pull on the cord and it ends in frayed wires. Not so convenient for ordering lunch. They put an order in for a new phone. I ask them to please order him some food. It's not like he's diabetic or anything. I know that they are coming to do the PICC line anytime and am afraid to leave to go to the truck to get food or to go to the cafeteria. Hospital law is that regardless of long you have waited to go to the bathroom, eat or shower, when you leave your kid alone for more than 2 minutes, the doctor or procedure you have been waiting for shows up.

2:00 PICC specialist arrives and off we go to a sterile room. A PICC is a long catheter that is placed in a vessel in the upper arm that extends into the vessel in the chest cavity. They use ultrasound to guide the catheter into place and x ray to confirm it is placed correctly. It is very uncomfortable. T refused pain meds and opted for a local injection. Because T is thin and his vessels healthy and strong it wasn't an easy placement. He is so awesome. He did great. Calm and collected through the whole ordeal.

2:40 I can tell by looking at him he is going low. 85, not terrible but he needs food. Get back to the room, check blood sugar, count carbs, insulin and finally- he gets to eat.

4:00 Nurses change shift and we go over everything we have been over six times- again.

5:00 T watches Batman (thanks Meri!) while I disinfect the room and then read a bit. Work on blog.

6:30 T and I go up to the Teen Lounge for a little Rock Band II on PS3. T rocked the '80's.
Order dinner. Much smoother with operating phone.

8:00 Back to the room. Blood sugar check 98, carb count, insulin, eat.

8:45 Sam arrives for a visit. I go to find some food for myself and get completely freakin' lost. For a woman who grew up in a village of 1200 people UCSF is a like a big city. Much of the hospital is under construction and being painted so many of the signs are missing. Thank goodness everyone here has been kind and helpful and not teased me to badly! Miraculously arrive back at the room and watch a little Dancing With the Stars and catch up on our day. Get picture of L in her favorite Dancing With the Stars out fit on. So cute. Text C goodnight.

10:45 Sam heads home. Blood sugar check 345. WTH?! Wash hands and recheck. 342. Hhhmmm. Highest he has been since the week we left the hospital. Either the hospital can't carb count or his sugar are reflecting his stress. I allow a half a correction to prevent an overnight low. Only meds he has had is tylenol. Any d-moms know if it can spike blood sugar?

11:30 I think I am done for the day, T is sleeping. Will check sugars at 12:30 and 2:30.

Blood draw at 6 am and pre meds of tylenol and benadryl. First infusion of thymoglobulin or placebo starts around 7 am.

Thank you everyone for you support and thoughts. I will update as I can. I can't put into words how brave I think T is for doing this. We love him so much. Thanks for following us on this journey.



6 comments:

  1. You guys are the best for doing this trial! We'll be thinking about you and sending good vibes your way.

    High number could just be stress...correct and move on. Tomorrow is another day :)

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  2. Thanks for sharing this... I am so interested to hear about your experience. I think T is so brave for doing it.

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  3. Hurry up and wait...so true friend! If it was liqid tylonol it could raise his bg...but most likely it was nerves. Hello PICC Line! My husband got one of those last year and I know what a process it is! What a rock star!

    I'm so impressed with T! And you! FYI, it probably would have taken days before I found my way back to his room. ((HUGS)) You are in my thoughts today!! Prayers that all goes well!

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  4. WOWOWOWOWOWOWOWOWOW!!!!!

    This is so amazing to witness....PLEASE update us via your blog as often as possible.

    I feel like I'm sitting on pins and needles!!!!

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  5. Like I said before, YOU have an amazing family.

    I felt like I was your shadow for the day experiencing it all...
    Thank you
    Please continue to keep us posted

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