War on Clutter

We're at war at the Madden house. It's a war on paper clutter. We had been losing, sure we'd win a battle here or there, but stacks of paper were on just about every surface of my kitchen counters. Then earlier this week I helped my oldest clear out several months of graded papers from his book bag. Wonder how that happened? I've decided I (we) need to set a better example.

See, I use to be so organized. Once upon a time, my tables were all clear, my files were all updated and in there proper places and I could tell you where to find things. Now horizontal space is fair game for stacking "stuff", my files are in boxes waiting to be dealt with and I may know where something is, but I have to be the one to get it. I can't just tell you where it is. (This makes my husband a little crazy.)

Now you may be thinking, "of course you have lots of paper. You have several kids in school and two home businesses." This is true, but I really believe it doesn't mean we have to live in a state of CHAOS! I do not expect my house to look like a page out of Better Homes and Gardens. But I think in our crazy schedule a little more organization could bring us some peace. I've been reading "Absolutely Organize Your Family: Simple Solutions to Control Clutter, Schedules &Spaces"

It has some good ideas, some of which we've already done. Like start planning our summer calendar, granted some of that was from necessity. Camp enrollment already started and these camps fill quickly. By having our swim meets and other activities already on the calendar we could see when a good week would be for us. Other ideas just won't work for us, and that's ok. It's not about following someone else's plan, but finding a balance that works for us. I've done Flylady I really liked it. I felt like I got things done, my house was presentable and I liked the "you can do anything for 15 minutes" concept. Just not sure it's completely for us either.

Bottom line. Somethings gotta give around here! I spent yesterday getting rid of the paper clutter in my kitchen, it felt great! The kids pitched in getting rid of papers that weren't important to them. I know it's going to be important to have their help completing and maintaining this process. We believe in chores around here. And no they don't get allowance for them. But that's another post altogether.

Finally! Some Good News!

We got Corbin's inhibitor levels back yesterday and they are lower than last month! Not just a little lower, it went from 173 to 88! It's still really high (our magic number is 10) and it may not go down that quickly in the following months. But at this point I will celebrate any progress!

Speaking of progress, I never posted how my do to list went. Well let's just say some days were better than others. Some projects got completed and others never even got started (like our taxes!). With just a couple months left in this pregnancy I am starting to feel the third trimester fatigue setting in. I know at some point I will be scrubbing the house like a mad woman amazed at the energy I suddenly have, but for now I am quite content to sit in my rocking chair with a cup of coffee and dare I say it....read a book on my kindle!

One Step Forward, Two Steps Back

Since my last post I wanted to be sure I was clear...I was trained by a medical professional before accessing the port. You should never do anything like that without training. Also, these are just my experiences and not medical advice. Please consult your medical team about your child's health! Ok on with the newest post.

Once a  month Corbin needs to get his blood levels check to see what his inhibitor is doing. It is my understanding that once the "levels" get low enough we will begin trying to teach his body that Factor 8 is a good thing! But that's still the distant future.

Since it was a day for his factor anyway, we headed up to Children's Mercy Hospital (CMH) in the afternoon to get meds done and labs drawn. After dinner we were playing when I noticed a red spot on his shirt, the site were his port had been accessed was bleeding a little. So, back up to CMH for an ER visit. By the time we were ready to draw more labs, and use a different factor product to stop the bleeding it was decided it had become too active to get a good seal with the sterile dressing. So we had an IV started.

Novo7 and pressure dressing stopped everything right away, x rays showed the port looked good and still in its original place. All good news. At 1:30 AM we go the go ahead to leave, if we wanted to. We've had a couple different times with the kids over the years, we've been discharged only to have to come back again a few hours later.

Our ER doc last night was truly awesome, he easily could have said, "well the hematologist says you can leave so head out." Instead he understood our concerns and let us stay for monitoring until Corbin could receive his next does of Novo7 if needed. Sleeping in an ER room is not the most restful sleep ever, but it sure beat driving at such a crazy time of night. He also understood my concerns about accessing the port on Sunday for our normal prophy day with all that had gone on. So when I pushed for leaving in the IV to give the port some time to rest he did. He was pretty sure the hematologist on call would not let us do it, but he asked anyway!  It ended up he didn't need a second dose and we were allowed to leave with the IV still in. See I've done this before!

It may not be necessary to give the port rest, but we are new to this whole thing and with it being a weekend and not being able to talk to our "normal" doctors and nurses makes me very anxious. I had been so confident! After accessing the port successfully twice in a row I was ready to take on the world and handle it myself! Needless to say with everything that went on this weekend I will not be doing meds by myself tomorrow, or even this week.  It's very frustrating, to not be sure why he reacted this way. Will it happen again? Right now I don't have answers.

Rest assured Corbin is doing just fine! He's been bugging his sisters all and played some video games with his big brother. (I missed my chance to get a pic of Kolbe with his DS and Corbin with a Leapster. So cute!) After a 31/2 hour nap with dad this afternoon, normal bedtime was a joke. He and I had some great one on one time this evening! Dad is working the winter sports dance. We are both exhausted, but doing our best to take turns resting.

I really had no idea what we were in for with this inhibitor diagnosis. I'm not sure it's something you can prepare for. Having an inhibitor puts you in a small group of an already small group. From what I have heard, inhibitors are different from kid to kid. What works for one may not work for another.

I guess I had thought the bleeds the would normally get would just be harder to treat. We've been blessed Corbin really didn't have many bleeds so I thought while the inhibitor might be a pain, it would not really be anything big. My thoughts are changing, this is most defenitly going to be a bumpy ride filled with many trips to CMH.  But I am confident we will get through.

Flying Solo

Well I did it. I accessed Corbin's port by myself. Without a medical professional in my home. Ok so I wasn't completely by myself, I did have my mother-in-law to provide an extra set of hands. I had been nervous about it this morning. I've only attempted to access it a handful of times, been successful three and two of those, well lets just say I barely got it. But today we did it! Set him up in front of his favorite show, currently Yo Gabba Gabba. (Which I can't stand, but if it makes him happy during the hour it takes to do his meds then I'll deal with it!) Got my sterile procedure started, Grandma made sure he didn't touch the sterilized area and we did it!

Here's a picture from Corbin's book "Infusion Time" of an accessed port.

Being able to do meds ourselves has several advantages, one is that we are free to do meds when it works for us secondly, it's really good for Corbin. While it may not be fun for family members to hold or stick him, he knows we love him and he trusts us. I have noticed he doesn't get as upset when we look at his port than when a nurse he doesn't know looks at it.

Photo from Drugs.com

How do I know this? Well, Katie (3) being such a great big sister shared her cold bug with Corbin. Any time his fever is over 101.5 degrees F it means a trip to the ER. I had it 103 degrees yesterday afternoon! See, the port is attached to a catheter in a large vein in his chest. This makes the risk of infection a little higher so we need to check everything out. Even if we feel sure the fever is about the runny nose and cough and not something more serious. We've had family with blood infections so we know how serious those can be.  So off we went to the ER for labs and antibiotics done through the port. As ports are used for many reasons I felt our local ER could handle this. Our nurse was great, but honestly I have never seen Corbin get so upset about having it accessed. I really think it's because he didn't know who was messing with him. Today he didn't but up a fight at all, just some tears and needing to be sure to keep his arms out of the way. Several hours and questions later we were released. Today we are fever and runny nose free!

Over all I still feel the port will be very good for us. We had gotten so use to being independent with Kolbe's meds it's sometimes hard being tied to someone else's schedule again. I realize there will be other things we learn as we go along and there will be other challenges. But for today I'm feeling pretty good!