my, what large biceps you have!

This morning I noticed Zander's right arm feeling a little swollen. When I went to spend some time with Awny, I asked her to take a look and she said it definitely looks bigger than his left arm and that is was very warm to the touch. We measured it was about an inch and a half bigger than his other arm. After monitoring it throughout the morning, I called the HTC and they scheduled him to come in. We saw our nurses (I can tell how concerned they are for Zander) and a hematologist, everyone agreed he was having a muscle bleed. The best we can gather is maybe on Monday during his blood draw his tourniquet was too tight or maybe we held him down wrong, whatever it was, he has a bleed.
The tricky part is, he is needing to use a different medication and we had not received it so after jumping through some hoops and thanks to a lot of great nurses we got it. Our plan was to get an IV in today and give him a dose today and one tomorrow. We need to see how he responds to this need medication and how his inhibitor will affect his treatments.
Sadly, we poked and poked and poked (Travis and I joked it is a lot of pokes when you loose track of how many you ended with) we think it was 7 pokes it total. We did not end up with an IV, we decided it was time to just get the factor in. We accessed a vein in his head and that was that.
The plan for tomorrow is to get a picc line put in and that way we will be able to give him his fancy new factor and he wont have to get all those stinkin' sticks.
There is a chance that there wont be a picc team available for us but we have our sedation time all set up. I am learning quickly that we have to roll with the punches, sometimes we put a plan in place and something like this happens, it's all about being flexible and making sure we do what is best for our sweet little man.
I will post tomorrow and of course have pictures of Z's new medical accessory.

Another adventure

The last couple of weeks prophy has been rough, more than one poke and a grouchy kid when it is all said and done. Last week, after two pokes we were going to stop and one nurse said maybe we should go to the lab and they can do his infusion (they are pretty amazing when it comes to hitting little veins) they said in order for the lab to administer factor they have to do a lab (is that why they call it that?). We decided to test for an inhibitor. It has been a few months since we did his first test (came back negative) and Zander has had more than 30 doses of factor so it is a slim chance, but that was the plan.
Last week came and went, no word on the inhibitor test. I asked Travis if he thought we were going by the rule, no news is good news. Then when we went in for prophy today things seemed off. Harris went back first (as always) and not long after they came out and said they were going to take an inhibitor test on Harris. Some warning lights went off in my head, I didn't think it seemed right that Harris was being tested. Then we went back for our turn, they wanted to do Zander's vitals, I said, "no, we did that last week." The nurse explained we were seeing a Dr. and we needed to do vitals. When we walked into the room I said to Travis, he has an inhibitor. Why else would we be meeting with a doctor.
Our regular nurses came in (looking like someone just hit their dog) and Travis said, "spill it." They hemmed and hawed and said the doctor would be in to talk to us but that yes, Zander's inhibitor test came back positive.
My first instinct was to cry, it was overwhelming, but what good was crying going to do. I took a breath and asked if I could get a pen and some paper so I could take notes. My mind was racing a thousand miles a minute. Questions were swirling around.
When the doctor came in we talked a lot, we learned that his inhibitor is low, 1.9 Bethesda units, (high is more than 5 BU's) That is a good thing. An inhibitor happens in 1/3 of boys with hemophilia. Zander's body is attacking the protein that we are putting into his body with prophy, the body sees those proteins as foreign. The remedy is doing super doses of factor, they have seen kids overcome inhibitors in as little as three months. It would probably mean factor daily, which also brings up the question of accessing his veins. It isn't likely we would be able to hit a vein everyday, they are just too small. We may have to get a port or a pic line. Lots of questions and lots of answers to come.
Today he was retested (to see where his levels are) and we have another appointment to discuss our game plan. I am sure I will be posting often to update you (whoever you are) on this new adventure.

victory

I just wanted to write an update on Zander's immunization debacle. When I got billed for our co-pay to the ER, I felt like I shouldn't have to pay it because it was an immunization administered the wrong way that landed us in the emergency room. So, I called Kaiser and asked how I go about appealing the charge. The man I spoke with was nice and told me I would get some paperwork in the mail and then I would be assigned a case manager and it is a fairly lengthy process. I filled out the paper work (this was at the beginning of June) and today the 13th of July I heard back from Kaiser. Here is the best part of the letter.





I know I won't win all my fights with insurance companies but right now I am 1 for 1.

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!)