Hayden is doing well with out his hickman. We had to go three days without water on the hole to allow it to heal from the inside out. It has already scabbed over and appears clean and infection free. It is so nice to strip his clothes off and just put in the tub, with no dressing to put over his hickman area, no dressing change afterwards and no worries of him pulling on the hickman or having it get caught on furniture.

Hayden is still on the BMT antibiotics to prevent infection until July but off of all steroids. We still lather him with Hydrocortizone 1% cream once or twice a day to decrease the redness or rashing.

His craddle cap is getting better, no more scales but now we have flakes and if his head gets dry enough he scratches it and it sometimes bleeds. So besides using the Neutrogena T-Sal at bathtime, we rub on Baby oil with a cotton ball to keep him moisturized. I mentioned a Red Ken shampoo, called Baby no more tears, well, I was told by my hair stylist that Paul Mitchell only has a dandruff shampoo called Baby no more tears, so I will hunt that down to test it out!
We really need to find a happy medium. And when we do Aimee McNally will be the first to know since David also suffers from this.

Hayden does have a mild cold right now, but the inhalers are still doing their jobs, so hopefully his body is strong enough to step up and wipe this cold out soon.

Today I was invited to speak about Hayden’s WAS journey at an American Red Cross luncheon in May. They heard of Hayden’s story through the Blood drive at my work that happens every couple of months. In order to motivate employees to sign up to give blood the DOR Communications staff feature people, on our intranet, who are directly effected by blood donations. Hayden was featured for one of the drives and it got alot of attention.

I will put together a PowerPoint photo stream and speak about the key points of Hayden’s disease and how blood donation directly effects WAS patients. I am excited to tell his story, but I only have 20-25 minutes to do so, so I plan to write out important points to stay on track. I could be there all day if I don’t!

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!

Tomorrow we go to get IVIG one last time through his hickman. Then it will be removed after that. He will be sedated so they can remove it. We will continue IVIG on a monthly basis using a regular butterfly IV in his arm or leg.

 Wish him luck!

Hayden is doing well being off of fluids and antibiotics.  We still have to watch his fluids, to keep that BUN level down, but Hayden and I have had solid sleep since last Monday!

We are now battling his Eczema again. I find myself lubing him from his head to his little toes. His head is the driest area and I have tried baby oil, and now Neutrogena T-gel which made his head red. I am going to pick up RedKen no tears, which Dr. Taylor suggested and I should have got in the beginning.

Hayden’s dermatology appointment isn’t until March 18, which is so far away!