Landry's 1st IVIg

For starters, I was a bit nervous about the whole prospect of Landry potentially hooked up to an IV for any length of time, especially with wrangling Ryli as well. Fortunately, Nicole doesn't start her summer job until next week, so she and Ryli had a sleep-over Tuesday night That proved very fortunate, as our ride showed up fifteen minutes early, and Landry did not want to wake up.

So, we loaded up the car seat and the bags. I erred on the side of caution and packed his dinosaurs and some things to keep me occupied, as well as snacks and drinks. Landry was nervous, and held my hand until he fell asleep en route.

We got signed in and headed to intake. Height and weight and blood pressure were a breeze, as always; he likes those. Buzzy made the actual blood drive a bit better, and then it was off to a room to wait for the doctor. That meant seeing one of his favorite nurses, Ashley, who he gushed all his knowledge of dinosaurs to. 

Results came back at 27. Between what I had been noticing in the past few days and his history of nosediving numbers, in conjunction with me not having a car and his upcoming birthday this weekend, they decided that the best course was to go ahead and proceed with the IVIg. So, off we went with Nurse Ashley to meet Nurse Coco and Nurse Shelly.

First things first a we got into our room... the dreaded IV. This prospect of another needle was made infinitely better by the promise that once it was placed, Landry got to go pick out a prize from the prize closet. He almost got it on the first go, but it ended up being a bad placement. So, with the news that another stick would mean a second prize, Landry sat perfectly still, and it was placed in no time.

While we waited for the bag of immunoglobulin to arrive, we were shown to the prize closet. Landry found his toy snake in no time flat, then spent the next five minutes scouring the closets for something, ANYTHING dinosaur. Finally, on the bottom shelf, slid way into a corner, he found his holy grail. A 2" by 3" Melissa & Doug dinosaur puzzle. 

We put the puzzle on the table as Landry climbed back into his treatment chair to get his Benadryl and Tylenol to stave off the potential side effects. Nurse Shelly wielded them, so of course Landry took them like a little champ. Then, the bag of immunoglobulin arrived and the drip was started. It wasn't long before the Benadryl carried Landry off to dreamland, and I sat and played with my phone and texted back and forth with Ryli and Nicole. 

Landry also got a steroid shot into his IV. When he woke up, the pig out began. Chicken strips, french fries and macaroni and cheese with a chocolate milk chaser. Before too long, he was hungry again and ate a cup of chocolate ice cream, a pizza, and 75% of a bag of popcorn. All of that between one and four. He also made his first foray with his IV stand to the activity area, where he played with cars and watched part of Toy Story 3.

At around three, Nurse Shelly came in to see if we wanted to go back to the activity area, as some of the other kids undergoing various treatments and their siblings were there doing crafts, playing, and watching movies. Landry couldn't get back down there fast enough and nearly forgot he was attached to an IV stand. He played along side his fellow patients and their siblings, and painted a set of pencil bags, one for him and one for Ryli.

By 4:30, the IVIg was done and the lines were flushed, and we posted up at the entrance for our return trip home. He is still extremely active but much happier now that his treatment is working its way through his body. If there is a next time, Ryli will go. There is plenty for the two of them to do.

All in all, I'd say it was a success. I made a mountain out of a molehill in my mind.So, next time, if it's needed, I'll be ready. Landry already wants to go back to see the nurses.

Life With/Life Without Factor 5 Leiden

This title for this topic is a misnomer of sorts. It could easily be titled  "Blissful Ignorance/Life With FVL" as it is something I was born with, yet had no clue until I was 28 and in the hospital after a pulmonary embolism, less than a decade after having had a stroke. Out of convenience, I will just refer to it by it's little nickname of FVL.

When I was in the ER, the doctor that was called in knew right away that something wasn't right. A stroke and a pulmonary embolism before 30 didn't happen to "normal" people. So, by the time I was rolled up to the ICU, there was a lab tech waiting on me. I may have been on all the morphine I could take, but I still counted the vials as the tech filled them. 

"Are you going to leave any for me? You just took 14 VIALS" I said to him. He laughingly called to the nurses station that I needed more morphine, because I could still count. I tried to laugh, but I couldn't. I didn't want to breathe anymore, the pain was so bad. I by no means wanted to die, but I just didn't want to feel, and it hurt like hell to breathe or hold my breath. It was worse than child birth. Unmediated child birth at that.

One of the doctors told me eventually that the results of the blood tests would take about two weeks. I made it out of the hospital with an inhaler and a prescription for Coumadin, along with instructions to return to the hospital the following day to get a shot in my abdomen of Heparin. 

Two weeks passed, and I thought that all the tests came back normal and I was just a freak of nature or something. I went with my grandma to help her get groceries at Hy-Vee. We made it to check out, and a call came in from my doctor's office. I quickly went outside before my phone broke up.

Holly, my favorite nurse, was calling with my  test results. At first, I was confused, as I wasn't getting my INR (clotting levels) checked for another hour. Then she clarified and said that she was calling about the tests from the hospital. She told me that it was called  Factor V Leiden, and could I please come to my appointment early because my doctor was currently researching FVL. That was a scary thing to hear.

I ran Grandma and her groceries are home and went to the appointment. All I really learned about FVL was that I only had one set of the gene, it was a clotting disorder, and I was being referred to an oncologist. That was not a pleasant thought.

I went to the oncology appointment. One of the first things the doctor told me was that hematology and oncology are in a way the same thing. That helped... a lot. He then explained that my blood was more prone to clots that just don't break up like "normal" clots. The way he put it was that if there were enough outside factors (smoking, hormonal birth control, long periods of sitting or laying down, pregnancy, long flights, and/or injury), I was heterozygous, meaning I inherited FVL from only one parent, and that increased my risk of a clot by eight times than someone who did not inherit the condition.

My knee jerk reaction was the desire to know what that meant. He said that I could not be on hormonal birth control (which was convenient as I had just switched from the pill to the shot), and that I was going to be on blood thinners for the rest of my life.I was also told that any additional pregnancies weren't the best ideas. He went so far to say that the FVL more than likely contributed to my two previous losses. And that I'd have to cut out the green leafy vegetables and anything else that had high vitamin K content. 

I stayed on Coumadin until the perfect storm occurred. I got sick of blowing veins at my weekly check ups, which I had to have because my levels were hard to control with my love of the vitamin K green leafy vegetables. I became borderline anemic once a month, which was pretty gross and expensive. And I lost my insurance. I went off and just crossed my fingers that nothing would go wrong.

Then, in June 2009, I had my positive pregnancy that would eventually carry the name Ryli. It had been five years since the diagnosis, and thankfully, albeit painfully, FVL did not mean that I couldn't have a healthy pregnancy. It just meant that I had to start injecting blood thinners as soon as possible and continue to the six week post-partum check up. It wasn't so bad, and the result was Little Miss Sass, 2010.

I stayed on thinners after being bridged back to Coumadin until X got tired of watching Ryli while I went in for blood draws. I didn't last too long off the thinners before I found out that I was pregnant again. More shots, and another little cutie in the form of Landry.

I had difficulty staying on Coumadin after I was bridged with Landry, because I couldn't take the kids with me, and X refused to watch them. I went back on briefly when we moved to Dallas, then stopped again, because of X.

I'm gearing up to once again go back on. I'm probably going to go ahead and get a uterine ablation or a hysterectomy to deal with once a month nastiness, and vitamin K is no longer discouraged, so long as you are consistent. 

My five kids have all come into this world with a 50-50 chance of being at least heterozygous (one copy) for FVL, same as me. Ryli and Landry both had to have surgery last year, so they were both tested prior to surgery, and they both carry a copy. Dace was tested after her senior year, and so does she. Connor and Tucker to date have not been tested, so I'm hoping that they didn't get it, which is statistically possible. The girls worry me slightly more than the boys, just because of the implications of hormones on FVL. May the ones who have it follow in the footsteps of whoever I got it from and never have issue.

For almost 29 years, I had no idea I had this. For 19 years, it wasn't even discovered yet. They say that knowing is half the battle. I have five incredible reasons to stick around for as long as is humanly possible.