Access... 2.0

I have conquered the Huber needle and infused my son for the first time today.  It was better than last time.  I put the numbing cream on at our house before we headed to the center.  (I didn't have any of those big, clear bandage things that they use to hold the cream in place, so I used Saran Wrap and tape.  Not pretty, but effective nonetheless.)  It seems to have worked well.  Harris cried the whole time that we had him pinned to the table, but he didn't cry any worse when I stuck him, so I call that victory.

I am, as always, so grateful for our amazing HTC team.  Our staff is the best, best, best ever.  Their support is the reason that this journey to independence is moving forward in a (mostly) smooth way.

Yay.

Access... sort of

After 2 weeks of healing today was the big maiden voyage for accessing Harris' port.

I want to do the infusions myself as soon as possible.  I figure, I can learn now, or I can learn later, but either way, I've got to learn.  I have been practicing my sterile technique and infusion skills at my house... on an orange.  This is good practice.  If I could've tracked down an orange that tries to put his tongue on the chloraprep swabby thing, touch my sterile field with his fat little fingers, scream, kick and buck like a chaffed donkey when I stuck it with the needle, I'd have been all set.

Too bad for me, my orange just layed there all quiet and unannoyed.  Stupid orange.

One the upside... my sterile technique was quite good (if I do say so myself), but when I did the actual needle sticking part... well, that was the downside.  Either I got it in the wrong place, or got the needle wonky, or didn't get it in far enough. but there was no blood return... which means we try again.  We pulled the needle and started over, this time with the nurse holding the needle.  We know now that the port works at least, and two sticks into a port is way better than 4 sticks in the arm, so we are still ahead in my opinion, but I am disappointed that I couldn't get it to work.  I hate it when things are bumpier than I expected.  Typically I am properly pessimistic enough to prepare me for the worst, but with Harris' hemophilia I can't help but be annoyingly optimistic.  Maybe it's just a kinder form of denial.  Oh well.  Better luck next time.

So, it's at least another week with the picc line and two more trips to the center this week to perfect my technique.

If only I'd given birth to an orange.

PORT-land

On Monday we had a port placed in Harris' chest.  We came to this decision gradually and jointly with our care team.  I am a big believer in looking at the entire picture when deciding what type of medical care is appropriate at any given time.  I believe this is true in all aspects of health care, not just hemophilia.

We considered a lot of different factors before settling on the port.  Among other things...

1. Harris' body has the ability to get him to places that his mind doesn't know to warn him about... there's a fair amount of scaling of tables and surfing on rocking chairs at our house.  Plus, with three older siblings there's a lot of keeping up to do... and that can be hard on the joints.
2. His "rubber ball" veins (ie- good veins that bounce around when you try to stick 'em).  This makes for a very sweaty, hold-the-hemo/wrestlemania extravaganza, where I usually end up laying across my baby attempting to distract him with his favorite food source, (me), while he screams his bloody head off.
3. The potential for turning out bitter siblings who tell their therapists all about how their mom made them wait for hours in the hospital waiting room with a baggie of brownish apples, some stale pretzels, and the choice to either watch the waiting room movie and like it, or watch the waiting room movie and not like it.
4. To this girl, self-reliance is always better than dependence... even though we will miss seeing our nurses on a weekly basis.  We really love them and they have become like members of our family.

After discussing the risks of the port, (infection, migration (another word for moving around), out growing it, clotting (are you kidding me?)), and the surgery (punctured lung - rareish, bleeding into the heart and chest cavity- really rare, oozing (another word for bleeding) - pretty common)  we decided to go ahead.

The surgery was short, maybe 30 minutes and we got to go back into recovery with him while he was still coming out of the anesthesia.  He didn't have any problems with the meds, but he was "a wild man" while leaving their influence, so the recovery nurse asked us to come be with him.  I think the mark of an excellent care provider is knowing their limitations.  I am sure that J. is an amazing recovery nurse, but she is not my baby's mom, and she realized that "mom" is what he needed.  I have so much respect for doctors and nurses who ask for help when they need it, or say "I don't know" when they don't.  They are really the ones I trust the most.

Our recovery has been surprisingly smooth.  I expected Harris to be in a lot of pain, but with the help of appropriate medications, he was up and walking (sort of) and climbing (sort of) the same day and was off everything except Tylenol by the end of day 1.

We went in for post op on day 4 and he looked "the best that we have ever seen".  Hardly any bruising, no oozing and the incision looks immaculate.

We are glad we made this decision and are keeping our fingers crossed that all goes smoothly from here on out.

Jack goes back...

Back to school again?

So our school re-districted its boundries, which means we were moved to a new school...which means, educating a new principal, new teachers and a new bus drivers. I went in to this meeting very well prepared...not to pat myself on the back but I have done this before, like every year since Jack started pre-school. This year I went in with my typical handouts from our htc as well as my own instructions, definitions, and handouts. I like to educate with facts, and personal experience. I like the teachers to know that I want Jack to use his Hemophilia to his advantage, but not use it as an excuse or a crutch. The staff, to my surprise was very inquisitive and the principal and supporting staff, actually wanted to know how to infuse Jack. I was like great...I am sure there are some of you thinking scary Awny, very scary,...but I think about it like this. If the emergancy response team can't get there fast enough, and I can't get there fast enough, In a pinch....I would love to have the principal know how to give an infusion. If I had to give three tips on how to give a successfull school presentation, they are as follows:


1. Be prepared. Know you material, so you aren't reading off of a paper

2. Don't use medical jargin...we all know how smart you are...use everyday people language,,,its sticks to their brains more.

3. Keep it short! no one likes a blabber mouth....!


Jack - I love you, and I know it scares your teachers to death that I don't put limits on your activity...I just want you to love life, and enjoy it...you know your limits.....

Take an active role in getting your school educated about hemophilia. The nurses here in ohio will come to the school and give the information to the teachers directly....but, well, .... I like the way we do it and it works for us...do what ever works for you....

-awny...

Bloody noses and other life threatening events

I recently received a hemoish question via email from one of our readers.  She wanted to know how to help a family who was having a hard time finding daycare for their child with an inhibitor.  Apparently no one in their area would take the child into their care.

Ok.  First of all, mean.  Second, ignorant.

Having gotten that out there-  here is my advice:  I have no idea what this family should do.  I have not had to find childcare for my son (thankfully) and my sisters all stay home with their kids too, so this is definitely not my area of expertise.

However, I know that my 8 year old nephew (Jack - you'll know him from this blog) got a nosebleed on the bus the first day of school... which was a huge emergency... to the bus driver lady.  Apparently, she pulled over and refused to take the kids to school until my sister came and retrieved her child.  Too bad for her my sister doesn't like being bossed around by the likes of scaredy cat bus driver ladies.

In the end, my sister got her to take a breath and drive already, but the kids ended up being 45 minutes late to the first day of school... thus making my nephew a hemo hero to all those tardy souls who share his bus ride.  (In the future, his plan is to carry lots of tissues and keep the bus driver in the dark.  Wise.)

Having told that sort -of-but-not-really- related story, I actually do have one suggestion... which I stole from my other sister.  I would call the Bleeding Disorders Legal Hotline and ask for some advice.  I don't know if childcare is covered by the Americans with Disabilities Act, but it seems to me that refusing to enroll a child because of a medical condition that affects no one but him/her is a bit sketchy.  The hotline is free and there is a link to it in the "bloody good helpers" section of our blog.

Here is the number, just in case.
Bleeding Disorders Legal Hotline: 1-800-520-6154

If anyone else has dealt with this and would like to share their experience or advice that actually feels like advice, feel free to leave a comment.

That inhibitor can kiss us goodbye

We got GREAT news today, Zander's inhibitor seems to be under control. His actual inhibitor level was undetectable. The recovery study showed his factor levels starting out at less than one percent (which means even with double doses of factor he is still burning through it fast) but after the thirty minutes his levels went up to 167 percent!! The team was hoping for at least 134 percent, look at us going above and beyond. So, the plan is now to drop down to regular doses (not two times the amount we should be taking) and go to maintenance therapy, which is three times a week (not everyday). We will also get to start talking about port placement, which I look forward to. Looks like we beat this inhibitor!!