We didn't get much sleep the night before as we had to be up at 2:30 am to leave at 3:15 so we could get to Omaha around 4:45. So we ended up lounging around the hotel for the day and ordering subs for supper. We also called Owens mommy, Michelle, who started a website about her son , which is how we found out about going to Duke and getting Matthew his stem cell infusion. Without her hard work with this website, we wouldv'e never found out about it. Owen received the first stem cell infusion for hydrocephalus in September 2006. Matthew is the 9th baby who has received stem cells specifically for hydrocephalus. I visited with Michelle and made plans to meet her family tomorrow at some point. Owen is currently in the hospital at Duke because he had a shunt infection and had his shunt replaced on Wednesday.
This morning we headed over to the hospital around 7:30 to have breakfast before our 9 am appointment. After breakfast, we had some time, so we went up to see Owen, and his mom and dad. We got some pictures of the boys together.
We had our 9 am appointment with the nurse practioner and then headed back to Owens room to hang out until our infusion appointment at 1 pm. It was fun to meet Michelle and Chris and Owen. They are such a nice family and we had a great time! We were even privledged to get to eat lunch with Michelle while her husband Chris stayed at Owen's bedside.
Dr. Kurtzberg came to give his cells around 2:30. After his IV was in, which Dr. Kurtzberg started herself, it was only like 15 minutes and his cells were infused. We stayed around for 4 hours afterwards so he could get IV fluids. They add a additive to his blood called DMSO that had to be flushed out of his system. My understanding is that DMSO was added to the blood before freezing to keep the blood cells from crystallizing. The additive makes the recipients breath smell exactly like creamed corn. No lie, creamed corn. And let me tell you, it is just EXACTLY like creamed corn! Bizarre. He will smell like that for around 24-48 hours.
Here's a couple pics with Dr. Kurtzberg, June(Dr. Kurtzberg's nurse and right hand woman) and Matthew
Matthew was very feisty and DID NOT like to have his arm held down during the infusion. A pacifier dipped in sugar water did the trick though to settle him down. We'll never know the extent this procedure has helped Matthew, but we will always know that we have done everything in our power to help him have a life with as few disabilities as possible.
We got back to the hotel around 8 pm and we were tired and hungry. We ordered pizza and settled in for the evening. Tomorrow we may do some sightseeing, or just lay around or a little of both.
4 comments:
Dear Jill, My name is Susan. I am Lisa's Mother-in-law, and Elisabeth's Grandma. I was intrigued to see that Someone leaving a comment on her blog lives as far away as Nebraska. Then I come to check out your blog and I see that your dear little baby son Matthew is a hydrocephelus baby too! I am so touched that in spite of your own problems, you take the time to stay in touch with Lisa and care so much about our precious little Elisabeth. I am so grateful that so many loving and caring people send so much love to Donald and Lisa and their family. It truly, truly, makes a difference. If you don't mind I will check in on how things are going with your family.You really have beautiful children. If you would like to visit me sometime Lisa has a link to my blog. It's just, "SUSAN". I would be honored to get to know you. Love from Lizzies Grandma!
Jill-
I'm so glad to hear that your trip has be great so far! That's awesome that Matthew didn't give you any trouble on the plane. Enjoy your little vacation! I'm guessing it's just the two of you and Matthew. How fun! The creamed corn thing is hilarious :)
Hurray for Matthew! I hope that the cells are hard at work right now!
Creamed Corn....yes, it's true. It is exactly the smell. Donald and I have joked about dressing Elisabeth as a little corn on the cob for Halloween :)
I love the picture of Matthew with Owen. Two sweet little boys. I am happy that you had the opportunity to meet Michelle and her family. And I am super happy that you were able to do the stem cell infusion for Matthew.
We were in contact with Dr. Kurtzberg yesterday to see if she thought giving Elisabeth the rest of her stem cells might cure these infantile spasms. As you can imagine, I am trying to figure out any possibility! If the next few treatments don't work for Elisabeth, I might be on a plane taking her back to Duke :)
Best wishes for Matthew and your family. And like my mother in law said, thanks for being so supportive to me. It is such a comfort to have friends who know and understand what I am going through. Take care.
Yay!! Matthew's got his cells!! I'm praying those cells are going to all the right places to help him be a strong, smart growing boy!!
I'm so excited for you that you got to meet Owen and his family. When we were at Duke for Cayman we didn't get that precious opportunity. I'm so thrilled you did.
The cream corn smell is wild isn't it?! To this day, Mike has nicknamed Cayman his little "Cream Corn".
We drove to Duke. Cayman was a little fussy when we drove through the Virginia hills, so I can't imagine what she would have been like on a plane at a completely different altitude. "Way to go Matthew, for being a good little boy for your parents!"
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