« Day 14, post HiCy | Day 18: Home Sweet Home »

Day 15, post HiCy – Hickman comes out!
March 31st, 2008 by Chenell

Wow, I can’t believe it’s finally done. Today we went in to IPOP for one final blood draw and to see Mindy, Chris’ nurse practitioner. After they drew his blood we had to zoom over to Blalock 5 in the main hospital. That’s where they took out his Hickman. The most painful part of getting it out was the shot of lydacaine. Once Chris was numb and the one stitch holding the Hickman was removed, the IV came out quickly and easily. If you blinked you would have missed it. Chris had the nurse stick it in a baggie as a souvenir. When we get home I’ll throw it on my scanner, it’s amazing how far into your heart the thing actually goes.

After the Hickman removal, we headed back to the IPOP to see Mindy. One of the other IPOP nurses gave us a guide to takig care of yourself after HiCy. It has a lot of useful information that I would have liked to have known before going through the treatment as well as when he was released from the hospital. I am going to try to make some of it available online for you. Mindy gave Chris his final lab results and called Chris’ primary care physician so that he can have blood work done weekly when we get home. We said our goodbyes and told her we’d keep in touch. :)

We got down to the atrium and tried to call the shuttle, the phone went straight to voice mail. So I called our hotel and asked for the shuttle and they forwarded my call back to the cell phone. I finally call the other hotel the shuttle is based out of and the woman told me it was out of service for the next 30 mins. So we try to call a cab. The first call was at about 12:45 and I was told to call back in 15 if it didn’t show. Well it didn’t se we called back oh, like four times. We finally got so sick of waiting and it was long enough that the shuttle was already running again. I think it had something to do with opening day for the Orioles.

While we were waiting I read over a lot of the booklet the nurse gave us. I read in there that there is a very good chance that Chris is infertile because of the HiCy. It’s a little sad, but I was never head-over-heels about having a kid anyway. I don’t need a child to be fufilled. We could always adopt. It only bothers him now because he can’t. It’s like a kid never plays with a toy but the minute you throw it away, he asks for it. He knows he’ll forget about it eventually, just like the little kid.

We saw Dr. Hesdorffer while waiting for a ride. He was a little busy so he didn’t stay long. He said Chris looks really good. And Chris had to show off his balance for him, standing on one leg. We also ran into Dr. B & Donna while waiting. They also commented on how well Chris is doing. Chris referred to himself of being cured of his MS, and neither one of them corrected him. ;)

I have to say we’ve been spoiled by coming to Johns Hopkins for this treatment. Never have we been take care of so well by a facility and staff. They are the best in the world for a reason. I owe you guys the biggest thank you of my life. THANK YOU TO EVERYONE AT JH!

When we got back to the hotel I looked up in our provider directory some orthopaedic surgeons for Chris’ knee. It is really paining him and he won’t be able to be active until it is fixed. His knee injury is a direct result of his MS. His messed up way of walking has been taxing on his body. He’s got an appointment setup for the 15th.

Tomorrow I have to get everything packed and I have to ship some boxes back home. I’m hoping I can take the hotel’s shuttle over to the UPS Store or something. I can’t believe we are going home on Wednesday. We honestly didn’t think we’d be back before the 6th according to the protocol.

Thursday Chris is going to go see Marleta with Hanger to have his WalkAide reprogrammed. His gait has changed enough that it’s not setup right for him anymore. It’s not helping him to walk as well as it should be.

Expect some serious changes to this site in the next few months. I have a lot of information to put into the HiCy section for you. Plus Chris doesn’t like the cartoon of himself in the wheelchair. He feels if it wasn’t for his knee he wouldn’t need it anymore except for longer distances because his muscles aren’t used to being used so much.

This is going to be my final post until we get home and settled in a bit. I plan on updating at least once a week unless Chris has a local doc appt, then I would write on those days as well. I have to go back to the job hunt when we get home.

Thank you everyone for your support during these scary yet exciting times in our lives. You have no idea how much Chris and I appreciate you.

Take care,

Chenell

P.S. Please be sure you check out the photo album of this trip, I’ve added photos on almost a daily basis.

10 Responses to “Day 15, post HiCy – Hickman comes out!”
  1. interested person Says:
    March 31st, 2008 at 8:40 pm

    Hopefully busy day means good day for you both!!!

  2. MaggieMae Says:
    April 1st, 2008 at 10:09 am

    I hope you plan to do another video of Chris walking now that his treatment has been completed. Maybe one every couple of months so that we can compare to the video he did before the treatment.

  3. pvns2005 Says:
    April 1st, 2008 at 10:22 am

    Have a good trip home you two. I will be in contact with Chris next week. My medical records are being sent to JH on Monday for review to do the HiCy treatment. Going to play follow the leader here. HA.

    “Talladega baby”

    Chris S.

  4. Chenell Says:
    April 1st, 2008 at 10:27 am

    I will be updating the site every couple of two or three days.

    Because of the anemia he may not want to show anything. The fact the muscles get tired just like when he had MS doesn’t look too good on TV right now. Some days he’s just beat. Others he is great until 2, 3, etc who knows!

    We will be putting up video of Chris exercising, doing PT, and some direct comparison video’s as we go. Just don’t expect too much too quick! lol We want people to look at the site to give hope, so video will help.

    Just know this – *From Chris*

    I’m feeling a lot better. And I will not comment further on that statement because I’m not going to put ideas in peoples heads. Watch the site and notice the differences yourselves. I may be feeling one big placebo effect. I don’t think so but you get the point.

  5. Ron Young Says:
    April 1st, 2008 at 12:46 pm

    I would like to take this oppurtunity to thank everyone out there for the words of encouragement/support and prayers for Chris and Chenell that were made over the last three weeks or so. It has been greatly appreciated.

  6. Jamie Says:
    April 1st, 2008 at 12:53 pm

    Thanks guys for this.

    It’s a month on Wednesday since we visited, hopefully should hear soon!

    Good luck with the knee!

  7. Sandy Says:
    April 1st, 2008 at 3:10 pm

    Congrats!!!

    You look good bald, Chris.

  8. Chenell Says:
    April 1st, 2008 at 5:16 pm

    Sandy,

    Chris wants to know if that’s an April fools joke? ;)

  9. Laura, your nurse Says:
    April 3rd, 2008 at 8:36 pm

    yayyy!!!!! congrats!!!! best wishes, you two! keep in touch and thanks for making a point to say good-bye! :)

    it was great to see you both!

  10. Sandy Says:
    April 8th, 2008 at 10:53 am

    Nope, not a joke. Sorry I can’t type much because the MS is rapidly affecting me these days. JH has my records now, so we will see… My low weight because of the autoimmune bowel disease is the main issue, I believe, in my acceptance.

    Chris, I hope to see you running some day soon. Keep posting, Chenell.