Our journey with this horrible no good very bad autoimmune systemic diseases is teaching us many valuable lessons about strength, love, resilience, faith, hope, relationships, and perseverance…no matter what! This disease is smack in our face every single day and I hate it with a passion and yet at the same time I love what it allows us to “clearly see” and “completely and fully appreciate”.
Never ever did I imagine that our journey would take us down a path of what feels like NO return to simplicity. But yet, simple moments are what I am finding that I value the most!
I have told many who are following our journey and who lift us up in prayer or carry us along with their encouragement that I would share what our newest days are like. Well, we are seeing some “good moments” with Parker’s health and he has been able to enjoy some fun activities again. For this we are truly grateful to his doctor for continuing to think a bit outside the box. We all know, Parker needs some “forward thinking” around his health issues. However, our insurance has changed a bit with our state's new plan (I am a state employee). We now have to go through a new company when ordering our medicine and that has resulted in some challenges and additional expenses. Parker’s doctor actually wants him to get twice as much of the newest med but they will only approve half of the amount…Completely frustrating.
Parker has discontinued Actemra and Enbrel. When he was in the hospital he got a “boost” of Remicade and was also started on Kineret. He is still on all of his other oral meds with an increase of his steroids due to his recent hospital stay and huge flare of mean ol’ systemic JA. And he is continuing his monthly infusions (right now every 3 weeks) of IVIG to boost his immune system. Many families in the world of JA and RA refer to this newest med we are trying, Kineret, as the “evil med” because it is traditionally given as a daily shot and it burns so bad the kids, and adults, beg for something else. (Yes, every single day these children are being tortured.) Parker is not getting it as a shot (for that I am thankful)…but he is getting it and not once a day but twice a day. And I am infusing it into his port. His port is now accessed all the time. And every 7 days, a home health nurse comes to change out the port access.
Just to give you a true sense of what a daily infusion entails, we did our best to take pictures of the steps. Cleanliness is key because the port is a direct access to his heart and we certainly do not want to infect it. The whole procedure takes me about 20-25 minutes.
1.
2. Get Kineret shot out of frig and wrap hand around it to warm it up as I prep everything else.
3. Clean bathroom area with Clorox wipes and clean drawer knobs and plate to hold all syringes/shot.
4. Pull out 2 saline syringes, 1 heprin syringe, 1 empty sterile syringe, 1 cannula (sterile syringe cap), 2 alcohol wipes, 2 non-latex gloves
5. Place Kineret down (remember it’s been warming in my hand), put on gloves and open all items making sure not to touch tips and only loosening caps
6. Transfer Kineret from syringe with needle to the empty sterile luer lock syringe and carefully cover with sterile cannula, place needle syringe in sharps container
8. So what this means is:
Unlock clamp, clean with alcohol
Saline (taking great care to not touch tip AND remove all air bubbles at each and every step)
Saline (first portion is still very slow because Kineret remains in the tube)
Heprin
Lock clamp
9. In between each and every step the port access needs cleaned with alcohol and the air bubbles removed from the syringe by holding it up, pulling back on the syringe to remove the vacuum, and then pushing it up to the top of the syringe.
When done…let out a big sigh of relief!
Yes, it is all very stressful! Parker’s fevers are gone now and his movement and pain is a bit better on some days and he is getting a few bursts of energy here and there. Yes, he is still in considerable pain; he still is having vasculitis, the rashes are trying hard to break through and are faintly there; his joints are still swelling but not as bad as when in the hospital; and he is still have quite a bit of fatigue…but he is also doing more because, like I said, he has small bursts of energy. This autoimmune stuff is no fun at all because he gets so excited about being able to have some fun and be a bit more physical and then after he does, the price is costly…he spends much time in bed. But he did have fun and he is glad he did! He is having some stomach issues again, but we are very thankful that his heart, lungs, and other organs are doing ok right now.
I took his port out after his infusion Friday morning so that he could swim for bit…30 minutes. My first de-accessing of his port ever! Also on Fri, he was invited back to his middle school to join their neon dance. He had a blast. He saw his buddies, wheelchair danced so smoothly that he drew a big crowd around him cheering him on, and he even dance with a girl (a friend….and very happy that she asked him to dance). He went on and on about how much fun the dance was and he now wants to go back and visit the school during lunch time so see his friend again! He really has missed the face-to-face contact.
I really don’t want to give Parker these infusions twice a day! I really don’t want to be scared twice a day that I might do something wrong or hurt him in some way! I really don’t want to see this horrible autoimmune systemic disease outsmart every drug we try! But we must, so we do! And we will ALWAYS keep pushing forward…until there is a cure! We are hoping to get Parker into the RAPPORT study that is an National Institute of Health (NIH) because that drug is much less intrusive than what we are doing now and is a drug already approved but for other uses. But the other uses are somewhat related to symptoms of systemic JA.
If you are reading this, you can see that Parker is in the fight for his life. We continue to be inspired by his strength, wittiness, and outpouring of love. We want to support him every step of the way, but we cannot do it alone. So thank you to each and every one of you reading this and thanks to those who are following our journey, praying for him, supporting us, and/thanks to those donating your time and/or money for our upcoming walk. We only have a little more than a month until Parker’s Purple Playas Pound at JA at Al Lopez Park in Tampa , Florida
With HOPE...anything is possible, even a CURE!
Join US for the AF Walk May 5th and/or Make a secured donation: http://2012awtampa.kintera.org/faf/search/searchTeamPart.asp?ievent=1002436&lis=0&kntae1002436=22CB076514A4413A842EFBD89E814BCB&supId=0&team=4910470&cj=Y
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