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1st visit to HIPOP/IPOP (whatever you want to call it)
March 18th, 2008 by Chenell

Chris didn’t sleep too well last night. He laid next to me tossing and turning before he decided to try the other bed. He just couldn’t get comfortable. Then when he did sleep he woke up freezing cold and then put the comforter on and woke up in a puddle of sweat. Altogether, I think he got about 3 hours of sleep. He woke me up at about 5:30am but I went back to sleep until around 7am.

We called the shuttle around 7:45am to tell them to be here at 8:15am. We were all rushing to get ready and downstairs. When we got down there he hadn’t made it in yet. The driver said he had ran into traffic. So we ended up waiting nearly 30 minutes for him to show. We got to HIPOP at about 9am. The nurses there were ok with it, especially since it was beyond our control. They took Chris’ vitals: weight and blood pressure. They took the blood pressure twice, once sitting and once standing. The nurse was pretty impressed. I guess Chris is healthier than the patients she’s a costumed to seeing. They took two vials of blood to test. We had to wait there until the lab results were in. We met Chris’ nurse, Carol, who also has MS but a much milder case. She will be giving him all the infusions and injections necessary in the HIPOP. We were there about an hour. Chris also met with the Nurse Practitioner to have an RX written for Ambien CR and a refill for his Baclofen. She examined him ad answered any question he had. His blood work came in and he’s so well off that they decided he doesn’t need to come in tomorrow. Our next appointment is Thursday morning. It looks like Chris’ white blood count (WBC) will be at zero sometime between Thurs-Sun. They want you to be at nadir (0 WBC) for 2 days min (per the protocol) before you can start on the drug to get your body making new blood cells. Chris has a 1 in 3 chance of getting a Neutropenic Fever in this time. If his temp is 100.4 deg F or warmer he has to be hospitalized for a minimum of 36 hours. Please pray that he doesn’t get that warm!! If he even has a hint of a fever I will do what I can to get him cooled down here so he doesn’t have to be hospitalized.

Took his new scripts down to the pharmacy. They have about a 90 min wait time so we went back to the hotel. I waited until after 3pm so the guy from this morning would be off. He’s always so late, I don’t care for him much. The same guy who didn’t call me the other night. I got a call from the pharmacy telling me that United Healthcare didn’t want to pay for the Ambien CR. The regular Ambien was covered but had stopped working for Chrisa long time ago. 30 tablets would have been over $160. I got 14 of them hoping he won’t need them every night. I headed back to JH around 3:30pm. Jeremiah, the nicest, kindest driver out of the bunch was working. He has been nothing but respectful and kind to me. He actually showed interest in my husband’s condition and said he’d say a prayer for us. He was nice enough to wait for me while I was at the pharmacy AND drop me off at the grocery store on the way back. He said he would drive me anywhere I needed and that he was here to serve. Good guy. :)

I picked up some REAL FOOD at the grocery store. I got some boneless/skinless chicken breasts and a sirloin steak to split with Chris. I also got some fresh asparagus, which is very high in iron. We had sweet potato, steak, and asparagus for dinner. Chris found that he couldn’t eat too much at a time. It seems his stomach has shrunk quite a bit. He got hungry later and ate almost all of it. Hes eating small meals here and there. He ate a huge turkey sandwich tonight as a snack at 10pm tonight. I couldn’t tell him no.

Chris is now wearing his WalkAide all the time and doing two exercise segments a day. He knows it will help him regain mobility plus it helps him walk now that the spasticity is letting up. He is pretty much just using a cane to get around the hotel suite. Last week when we got here, he was pretty much in a chair all the time.

I’m happy to say things are slowing down a bit here so I don’t have nearly as much to report. Tomorrow is an off day, I may not write unless something interesting happens.

Take care and thanks for keeping us in your thoughts!

Chenell

8 Responses to “1st visit to HIPOP/IPOP (whatever you want to call it)”
  1. Jamie Says:
    March 18th, 2008 at 9:59 pm

    That’s great news!

    Enjoy the day of relative normality!

  2. Sandy Says:
    March 19th, 2008 at 6:54 am

    Glad to hear Chris is doing so well!!

    Sandy

  3. Mike T Says:
    March 19th, 2008 at 8:38 am

    Thanks for the update!!! Please continue to keep us updated on his condition…millions of people have the potential to benefit. God Bless Chris.

    m

  4. pvns2005 Says:
    March 19th, 2008 at 10:22 am

    It’s all up hill from here brother. Hang tough!!

    Chris S.

  5. Teri Says:
    March 19th, 2008 at 12:05 pm

    My husband is having an MRI this week and submitting to JH for possible inclusion in the treatment program. Following your blog is most helpful and I appreciate that you are sharing what you are going through. Best of luck and I’ll continue to follow your progress.

  6. Lizzy-poo Says:
    March 19th, 2008 at 3:10 pm

    I love you guys and your in my thoughts.
    Both of you are very brave and I commend you. I am glad to hear that hes moving around better!

  7. Lori (a.k.a. pinky) Says:
    March 19th, 2008 at 3:19 pm

    Liz sent me the link to the site so I am somewhat caught up with what been going on lately with you guys. I hope all goes well with everything at JH. you’ll be in my prayers. Also if you want to hang out sometime to relax or go to dinner let me know we live about an hour and a half away and may be able to come up there. I we be visiting Colorado this coming week but other then that I have a workable schedule. Keep in Touch

  8. Lyon Says:
    March 20th, 2008 at 1:53 pm

    Hang tough Chris. It’s all downhill from here!
    Bob