Reform this.

Dear Huge and Super Rich Insurance Company-

Let's go over this one more time.  One prescription for factor VIII does not equal one unit of factor VIII.  One prescription?  $2500.  One unit?  $1 ( and change).

This time, write it down or something.

Thanks-
e

Factor Bills

My favorite part of picking up Zander's factor is looking at the slip of paper that shows how much money I saved because of my insurance. I often think about people who don't have insurance and wonder how they afford Hemophilia. It is a very expensive disease. At least with our center they offer help with factor if you need it. It can't hurt to ask your HTC if you are in need of factor assistance.

Two bleeds and a baseball game

So, this may freak some of you out that my son jack had two bleeds in one day. Ok, so i don't really know if the swollen finger was a bleed, but....factor is magic...it can fix anything. Maybe, thats why it costs so much....However, I digress from my originall topic....bleeds and sports. Jack iced all day - his finger and his knee...I believe these were both swimming injuries. I think he got jumped on? (uh...lots of boys in a tiny pool....)

anyway, my whole point of this blog is to tell you all not to fret. Jack made the decision to play, and he was totally fine. The week before he had another knee bleed, and decided not to play. I am so proud of my son that he is finally "getting it" when it comes to the care of his body. This has not always been the case, but I believe that you have to teach your child to listen to his/her body...and I on the other hand need to trust him.

It was a great lesson for us both

(p.s...nika this picture is for you because you said blogs are lame without photos!)

Awny, the third sister

Learning the ropes

At Zander's comprehensive visit we talked with our Hematologist and our nurse Alisa about getting more involved with Zander's infusions. We love Alisa and she does such a great job, but for me (and Travis too) I really want to be in control of Zander's disease. For those that know me that wont come as a surprise but I am a lover of control and I have to give that up weekly when I rely on someone else to do Zander's infusions.

So we came to the conclusion that we will learn the infusion process, which includes accessing Zander's veins. Alisa said at first we will practice on her (sorry about her luck) but my great family, Endre and my mom both said I could practice on them too. When we get it down we will start infusion Zander at home (yay!).

Today during Zander's prophy Travis held him (normally that is my job) and I felt in his arm for a good vein. I felt one (with Alisa's help) we decided to access that vein and she got it in one poke. Then I was holding the syringe with his factor. I made sure we got a blood return and administered his factor. Zander was a lot more calm today, he cried when he got poked but he stopped before we finished. Travis and I agree that maybe if we are more involved he might feel a little less frantic during the process.

I am excited to be learning and can't wait to be able to take care of him in our home!

(this picture has nothing to do with my post, but who wants a post without pictures... not me!)

The Good sister

Ok,
So my sister Endre wrote about guilt, and not having any when her son was born. (This is why I tiltled this blog, "the good sister". Totally joking of course. My sisters are great moms...:)) I on the other hand, felt a ton of guilt when jack was born. I felt so responsible for giving him this disease. I panicked at the thought of what his life might be like, the pain he would feel, the teasing he might have to endure;or even what he might miss out on. I soon realized (after a few infusions) that i could feel sad for the pain he might be feeling, but this was his life, and i needed to change my attitude about it. I could do more good for him than anyone else. I could help him get comfortable before his infusions, I could educate him about his disease, and teach him how to live with hemophilia, but not let it define him. So yes, I felt tremendous guilt...at first, but not anymore. In the end, everyone copes differently with a newborn with hemophilia. We all progress in stages. So whatever you experience its cool...life goes on.

awny (sister #3)

Tap Tap

Here it is...the long awaited infusion video. This is a typical infusion experience in our house. You can hear Mia in the background fussing a little because her foot was hurting her; but she knows that when I am doing an infusion on Jack she just has to stand back and wait her turn...we did get her foot fixed! Grady was on camera duty. Something he took very seriously. He wanted silence through the entire production. You can even hear him tell Jack to be quiet because he is being recorded...that made me laugh. You will hear us refer to an infusion as Tap Tap. When Jack was little and getting infused in the hospital once a week, the nurses use to tap his veins to make sure they were good candidates for a needle stick...hence...tap tap....Everyone is involved when we do this. Mia, my 4 year old even gathered all of Jacks supplies for his infusion the other day.
I didn't show the set up, because everyone will have their own way of doing this. The other step you don't see me doing is wiping the syringes with alcohol swabs. This was done outside of the camera angle..:) Everything else you see is typical of a tap tap day.

Jack, a.k.a The Participant, Grady,a.k.a The Producer,
Awny a.k.a The Infuser, and Mia a.k.a, Sound Effects

You want me to stick that needle where?

Here is something you should know about me.  I am afraid of needles.  When I have to get my blood drawn or get a flu shot or other needley things I have to utilize the relaxation techniques I learned in my childbirth classes to keep my muscles from tensing up.  (I'm pretty sure that if I do tense up the needle might break off and be stuck in my arm forever.)  Oh, also... I don't look.

It has occurred to me that as the mother of a hemophiliac this is somewhat of a liability... and that it makes me a huge hypocrite since every time my baby has his prophy I hold him down and tell him "It's just one poke.  Just one poke".

 We have decided that we want to avoid a port for Harris.  My nephew Jack has one and it has been great for him, so it is not that I am against ports in general.  We just feel like if we can become proficient with accessing Harris' veins it will make for an easier transition when he hits the time for him to do it himself.  Plus, I'm not big on surgery.  This brings me back to my needle problem since eventually (like within the next year) we will be doing this at home, (and when I say "we"  I mean "me").

I decided that I want to be the "really old granny who just came to the big city and is getting on the freeway for the first time in her life" of do-it-yourself prophy.  (ie - I want to enter this world very slowly).   I asked my HTC if they had any fake vein kits that I could start practicing on.  That's what I called it "a fake vein kit".  They hooked me up with something even fancier - a self-infusion program (the one I have is called the "Bay Cuff" made by Bayer) ... and yesterday my sister and I gave it a go.

This is what I learned.  The kit is really useful for practicing good sterile technique and learning an infusion routine before attempting the real thing.  Also, if hitting Harris' veins is anything like sticking a butterfly needle into a really easy to find plastic tube full of fake blood covered by a thin piece of pleather - then I'm all set.

MRI

Today my son Jack had a routine MRI done. The last time he had this done was in 2008. Jack has to alternate between chest x-rays and MRI's every year. This is done to check the placement of the port and all the "stuff" that goes along with having a port. Its not a bad thing, but it can be scary for a little kid. We have had great success with Jacks port. he had it put in when he was two, and it has been wonderful. We have had no infection or worries.

Like I said before, these procedures can be nerve racking for a kid. One thing I have learned as a mother with a hemophiliac child is to always be upfront and honest with them about everything. Yes, you will get a shot and it will hurt....but only for a second. The machine will be loud and you will have to hold very still. I have always told all of my children, not just Jack, exactly what will happen when we go to the doc. There will be lots of pokes, pricks, needles, and tears; but it is better to go in as a team with your childs trust, than to battle it out at every procedure. This is the Bloody Good Life of a hemophiliac. (just as a side note, Jack has done his MRI without sedation each time, and has done beautifully.) attached to this is a video of Jack explaining in his own words, just what it was like today.

Awny and Jack

Where did that blood come from?

Harris falls a lot.  He falls on his knees. He falls on his elbows.  He falls on his head. He thinks he can walk, but really, it's just his feet chasing his torso before they all hit the ground together.

Despite the falling, we ruled out a helmet early on.  We felt like it was just one more thing to draw attention to an already incredibly visual disease.  Basically, if Harris was in a lineup with a bunch of other kids, it wouldn't take a whole lot of detective work to pick him out as the hemo - and we didn't need to underscore that for him... or his siblings.

So when I picked him up from bumping his head today and saw that his hair was covered in thick red liquid I almost peed myself.  I know it's not glamorous, but there you go.  We did prophy this morning, but I was pretty sure "bleeding from scalp" would require more than one infusion.

Luckily.. left over strawberries from lunch do not.  I guess I need to be more thorough with my clean-up.

Immunizations...part 2

Here is a little update to what has been going on with Zander's muscle bleed. We infused through the IV at home on Saturday and Sunday and then when I went to flush it Sunday night it wouldn't work. So I pulled the line and I called the on call Hematologist on Monday, he told me it would be fine since we were going up on Tuesday to the center.

His leg is still feeling pretty warm and it is still swollen (that hasn't gone down at all) his nurse at the center was a little surprised by that. Both his nurse and the PT agreed that a couple doses a day would probably benefit Zander. When his hematologist came in he said he thought a few more days of infusions would be good but just once a day.

I felt very frustrated that neither the nurse or the PT said anything about doing it twice a day, so I asked. The doctor said no, once a day is fine. The reason I was curious about this is because a few weeks ago they tested Zander for an inhibitor (he doesn't have one) but they did find that he metabolizes his factor VERY fast. I guess I understand not wanting to second guess a doctor but both Travis and I agreed that factor two times a day is what we wanted to do and what we felt was best for Zander. We are told all the time that as parents, we are Zander's advocate and that we have to do what is best for him. When the doctor left the room we told the nurse that we were still wanting to do infusions a couple times a day, she was VERY professional and said that it is our choice and when we are at our house, he is in our care, and that we decide what that is.

I think from the time we are young we are taught to accept what doctor's say at face value and that there is no need to question a doctor. I just feel like a doctor spends two minutes with my son and makes his opinion, I spend all day and all night with Zander and it is STILL up to me to say what is best, even if that means going against the doctor;'s orders.

We have another IV in and will infuse for a few more days, I will post how it goes.

(the picture doesn't do the swelling and bruising justice)