Leo Clement

I'm actually home tonight while the 'boys" are at the PICU for what could be, maybe, possibly, our last night. It's almost hard to believe that we could go home. It's like those animals who have been in captivity who are finally let out almost don't know what to do, and often cower in fear and confusion in their cages. We would be cowering, but that sounds like it takes too much energy. We are completely exhausted after ten days of this shunt malfunction marathon.  Yesterday afternoon Leo had the hopefully final surgery to fix his shunt. The Neurosurgeon replaced all the tubing and tunneled a whole new channel for it as far away from his lungs as possible. During which he discovered that the connection between the tubing and the shunt valve was leaking and welling up CSF as he was examining it. Also his old tubing was inserted pretty high under his breastbone which often can jeopardize the integrity of the surrounding tissues; in other words, the plu

Another long, painful and exhausting day at the PICU finally draws to a close...or does it? It is hard to say because the days and nights in the intensive care unit are often meaningless. They blur one into another with the only distinction being triggered by a different set of neon lights and nursing staff; the night set almost indistinguishable from the day.. I'm whining I know, but the daily cycle of adrenaline induced energy and the resulting overwhelmed crash is taking its toll. And the process of healing Leo is just beginning... Today he took his first step on that path, after two weeks of severe illness. Crossing the "red line" into the operating room. This afternoon he had a surgery to externalize the shunt tubing from his tummy. By tonight the bag was filling up, so his shunt is still draining. Unfortunately, so was his chest tube. The docs will give him another 24 hrs or so to see if that fluid stops. This would be the best, because if it doesn't s

At least you know that when you hit the bottom of the barrel there is no where else to go but up. With God's grace and everyone's prayers this afternoon we miraculously got Leo's data transference test back four days early! This was the highly specialized test that checked for cerebral spinal fluid in the stuff leaking out of Leo's chest. And, because I knew all along that this was a shunt issue, the test was positive for CSF. Finally! The attending doc, resident and nurses, and us, and really anyone who knew about anything to do with Leo's case was dancing a mad jig up and down. Finally we have an answer, and finally we have plan to get Leo better. We must have been the only parents to react with hoots of glee and relief on hearing their baby needs to have surgery. The plan isn't totally hashed out yet, but it goes something like this, figure out what is wrong with his shunt catheter and fix the heck out of it. Details to come. It won't be so simple of c

No news. No improvements. No results. No answers. No peace.

Tonight Justin is bunking in with Leo at the PICU and I get to sleep at home. Ahh actually sleep without waking from the night checks, and alarms every ten minutes..it seems almost decadent. Anyway so far the news at the end of this Christmas Eve is much the same as the day before it. Doctors still have no diagnosis for Leo's poor condition, and no explanation for the massive fluid collection in his pleural lung space. It must have been the lack of sleep, but this morning after rounds I had a hard time keeping perspective. It all seemed so hopeless and doomed. But after a shower and a nap, we rallied and kept trucking on. The two main ideas the docs are playing with right now are shunt malfunction, and depakote allergy. However neither of those theories can be easily proved at this point, since boy's symptoms are so illusive. His mental status is very poor, with him in a lethargic state and mostly dozing throughout the day. Tonight however, perhaps because of more relief happ

This afternoon, after much deliberation of the team, and some not very subtle urging from me, Leo got the fluid drained from the plural space around his poor squashed and collapsed lung. No joke here folks, they drained a quarter of a GALLON of fluid out! The running joke is that Leo doesn't do moderation. He makes the radiologists use words like "huge" or "profound" or "massive". Perhaps it's one of those "you had to be there" jokes, but it does seem like he has got some kind of a trend going on in making docs expand their usual diagnostic vocabulary. Anyway the procedure was a success and Leo's lung inflated back up to 50% almost immediately after the fluid pretty much exploded out. The fluid is now off being tested and lion boy is resting and breathing much better then before. And no wonder having so much fluid pushing all his bits off to left field like that! No answers as yet to cause of this, but we are hopeful that the labs wil

Yup. You guessed it. Leo is in the PICU since yesterday. He has been sick with a nasty virus last week, but the nagging feeling in my gut was hinting at worse things brewing. Though the clinic docs couldn't find much wrong, he just wasn't getting better. Finally that nagging feeling could not be ignored any longer so with the support of Leo's wonderful Godmama we bundled him to the ED. A shunt series chest scan showed a completely fluid filled lung and an airway that was skewed off to one side; pushed by the fluid. It was kinda shocking!! Everyone was shocked because he wasn't showing respiratory distress. Not to merit that can of terrible scan. So they ruled out infection pretty quick and cleared his shunt. After awhile of head scratching and trouble shooting and tests, as of now, it seems that he is at a toxic level of his anti convulsant drug which in rare cases has been known to cause plural effusion (the fluid) in his lungs. They don't know why his body i

Well, we all knew he was special. A funky eye-clashing genetically modified flower in a bed of earthy wild posies... But aren't they all special? All the flowers and kids... I'm always in a hurry to respond this way, because there are many days when I don't want him be special. I just want a regular snotty bratty boy who doesn't give me daily gray hair or cold sweats. That's not reality though. Even those regular snotty bratty boys give their mum's gray hair and hot flashes. That is reality.... Bringing children into this world; giving them life and then helping to keep them alive, raising them in a proper and aware manner, remembering them always in your heart, is the reality and the work of parenthood. Unfortunately, something that should seem to natural and flowing on paper, is a whole different story in actuality and practice.  Why is is so hard !!! I wail to Justin on a daily basis, or at least monthly, depending on my hormonal state. Why, gosh

Thanksgiving rolled in on a blast of icy winter. That is our backyard. In case you were wondering. Our backyard which is located in Vermont, not Siberia though you wouldn't notice the difference sometimes. It's brutally cold and people talk funny. Plummeting mercury, ice and snow, ushered fall out like a cranky bouncer does a unwelcome bar fly.  The shock of it caused a round of colds and probable ear infections and other general wintery symptoms in our house. The humans and animals resorted to whatever coping technique that was available to deal with the sudden decent into the dead of winter. The animals took comfort in the wood stove, and the rest of us had to make do with sweaters and grouchy morning grumbles.  We discovered, unfortunately, that Leo not only reacts to extreme heat, but also to extreme cold. Many special needs kids have temperature regulation issues, but till now, other then getting a seizure during a rare Vermont heatwave, the little l

Unless you've only been browsing the photos on this blog, and perhaps even then, you've probably figured out that I love horses. A lot. Maybe even in some mad quantity which maybe a little intimidating if you are new to the whole thing.  At 13 I was already a chronic horse addict case. A little history here: I contracted the incurable "horse bug" at a fairly tender age, and have, since then, been counting pennies to keep horses in my life in some shape or form. To be honest, mostly in the shape of hard labor, since there are only two ways to enjoy horses; one is to be independently wealthy so that your unlimited cash can buy you your horsey dreams and the other, if you happen to be poor, is to work for them...and work...and more work, and if you happen to spectacularly lucky, someone may even pay you some pennies for your work. So far in my life I have been in the later category; working slavishly for every couple minutes spent on horseback. Don't get me

I, like many parent's of special needs kiddos, get most of my info, support, and Q &A, satisfied by the social media. There is a facebook page for every diagnosis and childhood ailment, and some that cater to all of them at once. My facebook feed resembles a lonely drunk's disjointed late night conversation with the bartender. Between the numerous ads for sale horses, photos of friend's babies and cats, sporadic gluten free cooking recipes and composting tips, I have also posts about severely ill or handicapped children. Following the photo of the gleefully smirking baby posing next to the family dog, is a photo of a child who has severe disabilities, and who will never be able to pose so easily for a family snap. Some days I just shut the whole thing down and walk away. The contrast is too much for me. But lately, I have been blown away by several things that seem in common across the board (or feed, to be technical) and it is surprisingly refreshing. Being a member of

Fall is always an introspective time of year for me. Full of changes and transitions, it always takes me somewhere I wasn't prepared to go, or in the case of Leo, a somewhere that I didn't even know existed. A crazy land where there doesn't seem to be anyone in charge,  money seems redundant and/or scarce, (take your pick on that one) and plans change seemingly just by pure whim (trust me, there is NO rhyme or reasoning here). Hmm actually this crazy land is starting to seem more familiar by the minute. Never mind, it's a crazy we are all used to at this point.  Leo resents the changes though. It's rough, being him sometimes. Life doled out some of its' hard knocks with a heavy hand to him, and earlier then it does to most of us. Little lion almost lost his roar there for awhile.  But time, they say, heals any wound, though in Leo's case, he may need a good decade or two. But I can say with some authority on the subject; that he definite