The Bungalow

Friday, January 25, 2013

IVIG 16

Today I am a bit spoiled....Steve is home (YES, WE HAVE A HOME) with the movers unpacking all of our stuff and Abby is with Melissa, playing with her best friends. I am sitting in a bed, trying to take care of online business.....

Today when they went to put my IV in, the nurse said to me, "Holy cow girl?! You've got some pokes in here!" Guess I will have scars forever from all these IVs every week.

The transfusion is going well, nothing new to report. As my weight goes up, they add more IVIG....One of the other joys of gaining weight during pregnancy - more time at the hospital.

I stated Prednisone as well (a steroid used in addition to IVIG to help neutralize those antibodies my body is creating). The side effects of prednisone are not real fun...I am hoping that my body tolerates it well without too much weight gain, swelling, acne, etc.

I haven't had ANY headaches here with IVIG. Praise the Lord!

A funny story from today....I get my Oxygen levels and blood pressure checked about 10x while I am here. I walked in, got my weight, and started the blood pressure check. As I was getting checked I said, "I have a new medication, do you put it in my chart?" As she is responding the blood pressure band started going and flew off my arm because the Velcro wasn't tight enough. The nurse responded, "What is this new med, something that makes you the incredible Hulk?!?" I responded...."Actually, yes, they are steroids!" It was pretty funny.

Anyway, I am looking forward to going "home" today. It is sad that the Bolton's house isn't our home anymore....

Friday, January 18, 2013

IVIG 15

I have to say, I have really enjoyed not having ANY headaches! I have a new brand of IVIG here in Colorado and have not had a headache since we have been here, praise the Lord!

IVIG here is fine. It gets a little boring, but I can't complain too much: they serve me lunch, I get a bed to myself, and I got a lot done today with setting up utilities, garbage pick up, arranging appointments, etc.

This morning did not start off so good though....
I got to my appointment, got settled, and at about 9:25 still hadn't had the IV in..I looked in my purse and realized....I had Melissa's keys.....

Darn it.

I borrowed her car last night and had her keys in my purse. So, really, I left her at home with all the kids and stole her only way to freedom...Cool Carey, cool. My stomach was so sick.

Jennifer came to the rescue....She drove up to the hospital, a nurse met her outside and delivered the keys to Melissa. Melissa even got to Chick Fil-A in time to get the last three free chicken minis....I love Chick Fil-A...even though Melissa was late, they gave her free breakfast. What a way to redeem Carey's huge mistake!

My treatment today is almost done and for that I am thankful. I want to go give Melissa a break and I can't wait to get up and walk around.

On another note, my nose has been bleeding constantly today. It stinks. This dry air is killing me! I gave Abby our humidifier for the past two nights and am now paying for it!

Friday, January 11, 2013

Steve Graduated!

Instead of going to graduation we had a friend take pictures of Steve to celebrate his graduation! Abby was a champ at smiling when mama danced like a crazy lady behind the camera...

We are so proud of Steve and all his hard work while in school...His lowest grade was an A- and he ended up graduating with several A+ in class' (I didn't even know they gave A+ anymore...)

Love you Steve!

IVIG 14

Got here today at 9, had IVIG going by 9:15, that is great!

The staff here at Memorial is super sweet. They are on top of getting me my meds and although it is a little less glamorous here (ie..I don't have my own room, bathroom, space, bed, etc.) it is fine.

They serve lunch every time I am here and it is a soup and sandwich which is OK. The fruit cup is my favorite, fresh fruit and all different kinds.

IVIG here is a different brand from what I had before, it is nice. It is in bags as opposed to bottles so the machine doesn't get air in the line at all which helps speed up the process.

Hopefully I will be out of here soon...I am on bag 2/2 and have about 800 mL to go...Lots of liquid being infused into my body each week! Let's hope it keeps BK2 healthy!

Thursday, January 3, 2013

IVIG 13

Well, doing my first treatment at Memorial and it isn't as glorious as it was at St. Joes....It's not terrible and as the day goes on it gets better....

It started off with me arriving at 9:00...I got here a few minutes early to get paperwork done, but that didn't seem to help.

There were several things that went "wrong" which made my get a little emotional. I am going to be brutally honest here because it is my blog and I can do that....I wasn't a little emotional, I had to choke down tears all morning long.

Things just weren't going as planned:

I was told I would have a copay...You kidding me? I didn't have on on tricare REMOTE in Michigan, no one has tricare in Michigan and I may have to pay a copay today? Here? in COS? Where everyone is military.
Paperwork wasn't filled out correctly and it took a long time to go through that...When asked, "who is your primary care physician?" I almost broke down...I have no idea who my PCP is.....I don't even remember the name of my high risk OBGYN.
The room isn't like what I had at St. Joes...Very open, not private at all. Nurses here are great, and super friendly, but change is always hard.
It took 2 hours to get my IVIG up to me from pharmacy....That is two hours of wasted time...I didn't start my treatment till 11:00
The IVIG here is a different brand, dose and has a different procedure....that makes me nervous.
They had to stick me twice with the needle...This has NEVER happened to me, I have great veins.
There are two other pregnant women who get IVIG at Memorial...Their doses are not as high as mine...They get done in less than half the time.
They are only open till 5:00 pm, that doesn't leave any time for flexibility with childcare.
My legs cramp up easily after sitting all day...cool

All in all, I think I am a little overwhelmed and it all came out today...I am stressed about a lot of things: finding a house, missing my family, getting used to a husband who works a real job, not sleeping well, scheduling at least two medical appointments a week, finding a car, and trying to get settled in a new routine.

However, with all that going on, and each complaint I have above...I am reminded of all the great things...and can quickly combat that negative attitude. The Lord brought us here, he has a plan for our every move today and in the future and I need to trust in his plan.

Even though IVIG was late, all the nurses were super sympathetic...I felt silly at first because asked for all these "unrealistic things" (i.e. having IVIG prepped before I come, sitting in a room on my own, going to be here all day, etc.) At first they all looked at me like I was crazy....Then they started realizing that my suggestions were great ideas....Because if i don't finish this infusion in time, they can't leave....
The head pharmacist came up and apologized to me for taking so long with the IVIG...he even brought me chocolate. He joked about trying to get me on the payroll here because I would be here for so long. When prepping my dose he thought it was a mistake because the dose was so high. Cool. (They base the dose off my weight...)
They moved me to a "room" with a bed as opposed to the open room with recliner chairs...The joke was, "you are going to get bed sores because you are here so long..." haha. Doesn't make me laugh.
I have my own "bathroom" with a curtain.
I got lunch...It was good....and super filling. I couldn't eat it all. Apparently I will get lunch every week.
The nurses here are great. Once they realized the "dramaticness" of my infusions they were really accommodating with timing of the infusions, asking what I wanted, etc.
Melissa is taking care of my girl. I can't even begin to write about how great Melissa is or I will cry...already have tears streaming down my face because of what a blessing she is.
They are going to prep my IVIG for next week before I come.
I scheduled my appointments for Friday's at 9:00, 10 weeks left, I can do this.
The IVIG here is done in bags....Only two bags to go through. That means less time transitioning between bottles.

I don't want to be a complainer, but I am not going to lie. This is hard. Today was one of the lowest days with all this. I feel like I just got things figured out in Ann Arbor and now I am doing it all over again...More ultrasounds, more appointments, blood drawn, IVIG that takes forever, new doctors with different philosophies on how to handle this situation and in the middle of all of it I feel like my life is in tornado mode. I am trying to be organized and systematic but we haven't gotten into a routine yet and change is hard.

If you have gotten this far, I congratulate you...Thanks for reading my thoughts, and if you get a chance, pray for us. I know God is here and thinking "Carey, Love, when will you learn? I have GOT this. I am GOD, remember?"