The hickman is otta here!

After 7 hours without food and 6 hours without drink, Hayden finally has his hickman tubing out of his chest! He has a small bandage where the hole is-where is came out of his skin. The bandage will be changed daily for the next three days to protect it while it heals from the inside out.

Our IVIG was moved up to 10am yesterday, then we were to follow with his hickman removal at 1pm, well that was before Hayden helped himself to a cracker in his diaper bag. Half of it fell onto the floor, while 1/4 of it made it into his little mouth. After 9:30 am Hayden wasn’t suppose to eat for sedation reasons. It didn’t even occur to me until he was back on his chair munching away. Then I told the nurse and that is when we had to move it back to make sure all the food was out of his stomach so he wouldn’t vomit and exasperate.

So 3:30 was the new time to remove his hickman. It was so hard to keep Hayden occupied without food for that length of time. We were able to take a stroller ride around the hospital (with his mask on) and visit people. He napped for two hours so that helped and then we played in the playroom.

Three thirty came and went and finally by 4:45, when Hayden had stopped whinning and asking for food (sign language) he fell asleep on his own in his stroller. It was about 5pm that the hickman specialist finally answered her page and came down to start things. It took 6 minutes for them to take out the tubing but about 20 minutes to sedate him even though he was already sleeping~weird.

He woke up slowly, but once he was up, he was HUNGRY! He drank some water and ate applesauce, vanilla wafers and some cheese curds. We finally walked out of there at 7pm-long day for him and me!

We picked up Miss Abby and went home!

2 Responses to “The hickman is otta here!”

  1. PaigeWelborn Says:

    Awesome! I know he doesn’t really know the difference, but I’m sure y’all are relieved. It is SO hard to keep little kids occupied without food! I’ve only had to do it once so far, but I’ll have to do it again on March 9 for Ayden’s Infant PFTs. NOT looking forward to that. So glad to hear everything went well!

  2. shashankgupta225 Says:

    Here is a link to more information about the genetics of Wiskott-Aldrich Syndrome that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: http://www.accessdna.com/condition/Wiskott-Aldrich_Syndrome/741. There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA

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