Tuesday, May 26, 2009

Your Big Day - Post Re-infusion

Dear Dylan,

We made it! It was a long day, but we are home and settling back in for the night. You are one tough little kid.

Here you are in this picture waiting for your turn!

This is where your day started - a stay in the waiting room with a bunch of other parents and little ones, all waiting to be seen, and the sobering realization that we are in what seems to be the cancer/chemo clinic for toddlers, little children and teenagers. Wow -- what a tough & amazing job the people in this clinic have.

You were taken back to be weighed and measured about 11:00am and we were taken to a room where we would spend the day.

We made a little play area on the floor as it became obvious to us that you were going to go head first off the bed if we didn't actually help you get to the floor. A little while later a very nice woman named Colleen came into the room and we talked about your medical history and she examined you. We talked about current therapies and 'the program' that we have done with you (http://www.iahp.org/) for 3 years. (http://www.help4dylan.org/)

We were told there were 3 children like you getting a re-infusion of their own cord blood stem cells in the clinic today. They were both younger than you (2 years old or so). The younger children would be done first, and then it would be your turn. Kristin, the head nurse for the day, came in and gave you some Tylenol and told you that your turn would be coming.

About 2:50 the 'crew' showed up. That consisted of Dr. Kurtzberg, June, Colleen, Kristin (the head day nurse) and Teresa (another nurse). We all had to hold you tight as Dr. K tried to get the IV placed into a vein in your foot. I understand that she personally places all the IV'S for the re-infusions. It looked like that might work, but it wouldn't draw back blood, so we decided on a vein in your right arm. That was quickly successful, but, you were pretty upset by this time and couldn't stop crying (and screaming). Through the IV, they drew some blood and then gave you Benadryl & some kind of steroid(?). Then they started the IV drip with your stem cells in it. You wanted nothing more than to sit up, but the important job of actually re-infusing your cells had been started, and it was imperative that you remain lying down and still. I am sure you may have also been bent on tearing out the IV, since you weren't too happy it was there.

The actually re-infusion was only about 15 minutes, and then the IV was checked again and an IV drip solution was started. The IV drip was to run for 2 hours, but about an hour into the process, you managed to dislodge your IV line and it was disconnected. You were finally successful getting rid of that thing!

You seemed to have a pretty strong reaction to the Benadryl and were wired and very upset. You were really out-of-sorts and screamed for much of the next hour. We finally got you some snacks and one of your favorite toys (a belt you like to chew on & you give it to me to run my fingernails on and make you laugh) and that seemed to help you to settle down and bring a that cute & long overdue smile back to your face.

After the IV was removed, we changed your clothes (you were pretty sweaty with all that crying, squirming, wiggling & screaming), and I know that also helped you to feel better..

We hung out for the next couple of hours until Dr. Kurtzberg came back in and checked everything out. We had a few minutes to talk with her and Colleen and were released to go home (about 6:30pm).

Here is a movie of your day. Your actual re-infusion started at about 3:06pm. I noticed that the camera date/time stamp is early by an hour....

Dylan, we love you, and our prayer is that this day will prove to be a huge stepping stone in your life's journey. We will ALWAYS be by your side and WE CAN do this together.

All our Love,

Mom & Dad

1 comment:

Joshua Hasten Bolt said...

Dear Jinger,
Thank you for sharing your letter about this day. As you have said, it may prove to be a VERY important day in Dylan's life (and yours). Therefore, writing it all down, the good and the bad, while it's still fresh, is a very good idea. You and Dylan, and all those who may have similar experiences, will appreciate it in the future.