Cdiff cdiff go away, please DO NOT come back another day! Yes, Damien has tested positive for this nasty little bug and is back on the medication, this time for a full month, in hopes of ridding his body of it completely. Cdiff is truly a monster and is soooo hard to get rid of. It is a cycle-first you get the bug, you start antibiotics and the cdiff begins to clear, however since cdiff usually appears AFTER a round of antibiotics it just comes back (especially since he has no immune system making getting rid of it a nightmare). My poor little sweet pea is miserable and we didnt get much rest last night. Between the horrible stomach cramps, the endless dirty diapers (I lost count after 11 and that was just overnight), and the cries of I dont wanna be sick-both momma and Damers are a wreck today. Fortunately, he has FINALLY drifted off and I am praying he gets some much needed rest. These past few months have been rough for our family. Rough emotionally, financially and physically. Emotionally because no matter how tough one is or how routine the illness is, seeing your child sick and in pain never gets easy. Seeing him tethered to machines day after day just so he can live is rough beyond all comprehension. While we are so so so very grateful that transplant is even an option and we are humbled beyond belief at the thought of Barbaras selfless gift to our son, knowing his only chance at any type of normal life is through receiving another persons kidney is a tough pill to swallow. It is truly like a knife to my heart to hear him ask why am I sick and having no real answer just adds fuel to the fire. I do my best to stay busy. I do all the normal household tasks of cooking, cleaning, laundry, grocery shopping, etc and I also do all the NOT so normal tasks-countless bed linen changes due to leaking feeding tubes, hanging feeds and changing out milk bags every 4 hrs (day AND night), giving 9 medications every day-some 4 and 5 times daily, fighting Damien tooth and nail every evening for his Hibiclens bath so the MRSA does not take over and become problematic, ordering supplies, educating teachers/therapists/pharmacy reps/etc on his needs to ensure he gets all he needs, food therapy and speech to help him learn to eat, physical therapy to strengthen his legs in hopes he can one day walk. The list goes on and on. However no matter how busy I keep my body, the brain has a funny way of letting the mind wander to the dark places I fight to control. Herein lies the physical drain aspect and as anyone whos ever had extreme stress can tell you-it really IS draining. And then theres the financial strain of caring for a chronically ill child. While I have never, NOT ONCE regretted having Damien and would choose him over a lifetime of money all over again if given the chance, the financial strain is real. I have worked my entire life, as long as I can remember. Doing odd jobs for an elderly neighbor at 14(ish), babysitting at 14 and 15, watching over my baby sister while my parents worked, etc. At 16, when I would have loved to just hang out with my friends, my dad gave me an ultimatum-get a job in 2 weeks or you are grounded until you do. Trust me, Im no stranger to work and wish I was able to still do so, however having a chronicaly ill child changes that as well. One can only stretch themself so thin and it became necessary for me to take a leave of absence from my job when Damien was really sick and it didnt look too good for him Between these past 2 months we were admitted and the month long admission just a few weeks before that and a transplant in the very near future (which obviously will also keep me from being able to work) our family is struggling just to stay afloat. I dread answering the phone or going to the mailbox these days because it seems there is always someone who wants a payment :( As anyone who knows me well can tell you, I am a very independent person and asking for help goes against my very nature, however I am at a point where I must not only ask, but accept help in whatever form it presents itself. For this reason I will attach the link to our fundraiser. If any of you are financially able to help please know how grateful we are and know also that there is no amount too small. EVERY dollar adds up. If you cannot donate financially, I simply ask you to please share this status and please NO negative comments. Trust me there are no words you can utter that will make me feel worse than I already do. Thank you all so much for all the love and support. Please know it truly does help more than you can possibly know. gofundme/Damien-McCauley-Fund
Posted on: Tue, 12 Aug 2014 20:06:02 +0000
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