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.
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