Monday, September 21, 2009

IVs, Stanford, travel, homeschool, Dance fundraiser

Wow! I just keep falling farther behind in posting health updates, so I'll do a quick overview and you can skim for the topics that interest you most. Each topic here probably should be it's own blog post, but I'm just not up to that, so I'll bold the topics and you can pick and choose what you read. :)

Weekly IVs 5 and 6
I've had 3 more IVIG infusions since I last posted about them in any detail, infusions number 5, 6 and 7. The 5th and 6th both went amazingly well. We thought we had found just the right combination of things to keep me from being reactive:
- IV drip of normal sailine during entire transfusion:
- 50 mg benadryl beforehand
- excedrin beforehand
- oxygen during the entire infusion
Both infusions done with this combination were over in only 2 - 2 1/2 hours with only minor discomforts!!!

PICC line issues
Then my PICC line decided it needed to start bleeding this week. I went in for midweek dressing changes on both Thursday and Saturday with blood dripping down my arm. Not fun. :( Thankful the PICC continues to be serving its purpose well and there is no sign of infection. The skin around it is getting rather chapped from the dressing changes, but we packed it really well with the weight of a heavy sandbag after yesterday's dressing change, and so far no signs of leakage yet today. (It had begun oozing last Monday morning after the IVIG #6 infusion on the prior day.) Hopefully we are past all that now.

Yesterday's IVIG (#7)
Well, maybe you caught onto the fact that I only mentioned 2 of the 3 past IVs going so well and that we had thought we had the right concoction? Yesterday we got there (Rick has a tummy bug, so my parents took me) and had a different nurse than we had for two prior treatments. Gave her the rundown on what was working and she informs us that IVIG is never to be dosed in conjunction with anyting else, including saline. Saline can interupt some of the effectiveness of the IVIG. Uggg.
So she agrees to give me a heafty dose of saline before hand to get me really hydrated, still lets us do all the other stuff, and will follow-up the IG with more saline, but even pulls out the fine print on the package paperwork and points out that she can't run the saline with the IG. I actually did realatively well with no dramatic reactions, but it made for another LONG infusion, getting there at 1:30 and barely finishing up before they turned out the lights at 7PM! Mom stayed with me the whole time so it was nice to have the company, but it was discouraging that after we thought we had it all figure out, we had to take such a backward step. Thankfully though, still no major reactions, so I'm striving to be content in that. And despite all the frustration and inconvience, I am beyond thankful to be receiving this treatment and life-giving medication at all!!!

Our trip to Stanford
I guess it's already been two weeks since our trip to Stanford. We left early on a Monday morning, after just having had the IVIG the afternoon before. I was throwing up by the time we reached Auburn (about 2 hours drive) even with a double dose of motion sickness meds and my pressure point "sea bands". I was very uncomfortable and exhausted. Fell into bed as soon as we got to the hotel and only got up again for a quick dinner. My family went sightseeing on Tuesday so I had the quiet hotel room to myself and slept a good portion of Tudsay and quietly read between naps - that felt wonderful to have such quiet!
Wednesday morning we had to be to Stanford by 8AM. Dr. Montoya didn't make it in to see us until about 9:30, but then he spent a full hour and a half with us! We were stunned that he took so much time. We really didn't learn anything new there, basically just confirmed that everything we had already been doing with Dr. Peterson was exactly what he also felt we should be doing. I guess our main "take away" from that appointment was Rick's better understanding of how stress negatively impacts my body and how basically anything and everything can cause some level of stress in either the emotional, mental or physical areas and that we need to limit as much of any type of these as we can. We came home and had to take a hard look at our lives and have cut out many commitments this year. As I posted in my Cutting Back thread, that includes my time spent on the internet.
I did better on the trip home, but have had a hard time getting out of bed each morning since the trip and my muscle twitching that had noticably diminished since starting the IVIG treatments has come back pretty significantly ever since the trip. That kind of travel is just SO hard on me. It's ironic that I'm told to "cut stress" but in order to get that advice my insurance sends me on a trip that is very stressful on my body!

I Hope You Dance fundraiser
Our highlight of last week was getting to attend the Whittemore Peterson Institue's I Hope You Dance fundraiser. Thank you, again, to all who enabled us to attend!!! I went in my wheelchair and did great for the first part of the program, but with so much stimulation (music, 500 people eating and talking, lights, sounds) I was pretty overwhelmed after about the first speaker. We did hear some very exciting things about upcoming announcements on Chronic Fatigue Syndrome research, so keep your ears open to the news in mid/late October when significant medical reasearch hits press release stage. I'm so hopeful about what's unfolding right here in Reno!

Homeschooling
We are still homeschooling this year. People ask me how we do it with my illness, and my answer remains that I simply cannot immagine trying to do a traditional school schedule with this illness! We have a flexable schedule, can start as late in the day as my health dictates, we can "bedschool" whenever we need to and I don't have to pack lunches or drive carpools. When you throw homework into the mix, I figure I would be putting just about as much effort into "schooling" my kids at the end of the day when everyone's already spent as I already do when I have the joy of working with them fresh in the day. So for me, homeschooling's really the only viable option I see right now, and I've very thankful for the opportunity to learn with my kids each day!
We are using My Father's World with Big J. in 5th grade, R in 1st. and Little J. still just coming along for the ride. :) The kids are also involved in Eagle Co-op and loving their classes there!


RV Trip
This week's going to be interesting. Rick's got a tummy bug, I'm trying to get back on my feet from yesterday's IV, then my next IV actually comes around on Friday morning. (I typically start feeling "better" from an IV about Thursday, so this week there won't be much room for rebound.) On Saturday we pick up our RV for our long-awaited family vacation. This has been in the planning for many months, since long before IVs or the Stanford trip or anything else and will be our first ever family vacation with all five of us and no one else. We are excited, but I must admit to feeling nervous too. This week Rick will do all the shopping while I work on packing. (Both my mom and a friend have offered to come help with the packing and I'm definately taking them up on their offer!)
I'm so praying this will be a time of wonderful family memories and that Rick and I will be able to be a true blessing to our kids next week without compromising my health farther. It's one of those decisions that we know comes with risk, and yet it's a choice we are making based on the needs of our whole family, for once not just making our family flex and stretch around my health limitations as they so regularly must do. We are going by RV so that I can rest in bed as much as I need to during the travel time and we are keeping our plans very simple, intentionally not trying to fit in visits with friends along the way or pushing through an activity-laden agenda. We'll be packing ready-to-eat foods and will do our best to simply "be" and focus on enjoying one another. Feel free to follow our adventures on our travel blog next week.
I'm praying my handcap license tag gets here this week. (I've had a plate for years, but as we won't be taking our van, I won't have handicap parking access if the window hanger tag doesn't come on time.) We realized on our trip to Stanford (Rick's parents drove us, so not our own vehicle) how important this tag would be for our trip, so my primary care doctor requested it for us the very next day. After her knee replacement surgery my mom had her tag within a week, so I'm hopeful it will come on time. Would you please join me in this specific prayer request?

1 comment:

Kysha said...

It sure pays to be flexible doesn't it? I love MFW as a working mom. I see that you've had a lot going on. Praying for you. For some reason, I want to call your blog Fertility Mom. Life and death lies in the tongue and I'm speaking life and victory over you so please excuse me if I don't call you Infertility Mom but Fertility Mom. :-)

God has an awesome plan for you, woman of God!