Jake's first plane ride. We were so thankful he slept the whole time.
A little nap before hand.
The infusion begins..
A very hungry boy after we were all finished!
As many of you know, this week we traveled to Duke for a cord blood tranfusion for Jake. Basically what that means, is, when Jake was born, we banked his cord blood and sent it to Duke. When we arrived, they thawed 10 million cells and gave them back to him through an IV. Cord blood contains non-specific stem cells. The thought is that the stem cells can go to areas of the brain that are injured and help re-build the damaged tissue. The doctors at Duke believe that hydrocephalus is equated to a pressure injury in the brain. Stem cells are given every day for other childhood illnesses such as leukemia, but it has never been given for hydrocephalus. There is one doctor, Dr. Kurtzurg, at Duke whom is doing research in the area of hydrocephalus and cerebral palsy. She is the only one giving cord blood for these issues at this time, and is obviously the leading researcher in this field. Jake was the approx. the 25th child to receive his cord blood cells for hydro. We will never be able to prove if this was beneficial to Jake, but, because there was no negative risk to him, we decided to go forward.
We flew to Durham on Sunday on a chartered plane. It was a 10 hour drive, and Jake cannot fly commercially yet. We were very blessed for our pilot to offer his services (and plane) to us. Monday we went to Duke Children's Hospital for physical and to go over the procedure, and then we had the procedure on Tuesday. We were supposed to fly home Wednesday, but because of the tornadoes, we came home on Thursday.
When we arrived on Thursday, Jake was given Benadryl and Solumedrol to prevent any reactions from the preservative in the stem cells. Then, Dr. Kurtzberg and her staff came to do the infusion. As you can imagine, with any new treatment, there are a large number of people who want to witness the procedure. (Even though it was only about a 15 minute IV stick!). So, in the pictures, you will see Dr. Kurtzburg, her NP, the program director, the music therapist (the one with the guitar, haha), Dave, myelf, a nurse, and several doctors who wanted to witness the "event". So, Dr. K started the IV while the music therapist played his guitar and sang soothing songs. She couldn't thread the first one, but the second time was a success! They started the IV, and he was finished in about 15 minutes. After, we stayed for a couple of hours to make sure Jake wouldn't have a reaction and to give him a little IV fluids. Jake, of course, screamed through the IV insertion but for the rest of the procedure, he fell asleep in between.
As if this wasn't exhausting enough, the day we flew home, Jake started having blood in his diaper. So, as soon as the plane landed, we headed for the pediatrician's office. She decided that Jake cannot break down the proteins in his formula, so we are now on a milk free, soy free, formula. I am pretty sure it must be made of gold dust, considering the price! But, Jake is happy now, so mommy and daddy are happy! We also went for an abdominal X-ray Friday, but it was clear.
This has been an exhausting week to say the least, but we are so thankful for all the wonderful people who took such great care of our Baby Jake this week!
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