Leo Clement

Too tired tonight, but a quick update for all you Leo enthusiasts! All is well today, he had his wound drain removed today and started peeing buckets (literally) after they gave him a combo med which helps pull the fluid from the soft tissues into his kidneys, and then gives those kidneys a kick start. It was amazing to see how the swelling started going down the minute he started passing all that fluid. He also had his first bowel movement since the surgery tonight before I left the PICU. Yay! (Sorry if this is too much information, but right now, all this stuff is pretty important.) I am so proud of my little guy! He is totally amazing. Tomorrow morning they will try to trail xtubate him, and I really hope he is ready for that. Its hard to see him all plugged in and sedated all the time. When his meds start wearing off is when I get to see glimpses of my goofy son. Like when I was changing his diaper and didn't notice that his hand restraints were loose and, of course, when I loo...

And the letter of the day is P, as in not enough. Little Lion man is still a little high and dry, and very swollen today. The only way the edema in his little chunk a munk body will go away is through his kidneys, and it looks like they are still napping. When I left the PICU tonight the nurse and attending were planning on playing a little with the balance of the meds, fluids, and in addition perhaps give Leo some more blood. He sprung a little leak today from the site of his externalized shunt so he is getting a little depleted again. No worries about the leak, since the neurosurgeon and her team put a little stitch in to patch the leak and all is well again. It was neat to see them do their thing, even though this procedure was miniscule in comparison to his surgery. I even got to help a little. That made me feel better, because lately all the help I could give is of the moving-out-of-the-way and just-talk-to-him kind. That's all fine and good and definitely has it's own pla...

So just a quick update: Leo is doing really well, considering he lost 4 times his body weight in fluid and blood. His team freely admit that this was the most extreme and drastic case that they have seen. Last night was a little touch and go with lots of tweaking of his systems, but today his room was pretty peaceful and mellow. He wants to be awake and starts wiggling all over the place and fights the sedation meds as only he can. What a trooper. He's had some milk through a NG tube, and things are really looking pretty good right now. He had a quick brain MRI last night to check on things, and not only did things look good, but it seems like just in the time since the surgery, his brain has decompressed even more, and his scan compared to the old one in April looks fantastic. He is just growing more brain!! Haha! He's getting pretty puffy now and his eyes are starting to swell shut, but I think that tonight is the worst of it. Hopefully he will be taken off the ventilator s...

He's getting his first feed thru a NG tube. Dude was hungry!

Leo is stable and semi awake. Things looking up!

First off, sorry about the disjointed nature of the posting from yesterday. I was updating via text messegaing from my phone and because the service is patchy in the hospital not only were the posts chopped up but they were frequently out of order. You have to be a sleuth to figure it out. On the other hand, I guess it was a direct reflection of what we were experiencing! Between getting little bits of info and there, we had no clue what was going on. This is what we have been able to piece together since yesterday. The surgery itself was a definite success, though there were a few surprises. One of which being that when they took out Leo's shunt of 8 months they discovered that it was not working. Huh??? He never showed any symptoms of shunt failure and brain compression, so what the heck? In between the sobering list of items now holding risks for our guy, the nuero surgeon dropped this little bombshell on us. Does that ...

scary for us lay folks. He is getting a central line put in to expedite his care. He will be intubated for 3 days. Swelling has started but he is still cute, he

artbreakly so. Please pray!

Leo is in PICU now and we are completely spent. He is not yet stable so lots of tubes, drains, beeps and people scurrying around. It's pretty intense and kinda

ver..... be still my heart. Everytime they page us my heart jumps out of my chest...

Update! They are now closing him up and wrapping up the procedure. He is doing fine. No estimate for how much longer until they are 100% done but the worst is o

ns!

No new is good news. Last update was about whether or not we wanted the hair clippings. Just holding the fort and grateful for those stopping by with distractio

Surgery update #1: Leo is getting settled in the OR, he giggled and smiled while J and I used up a box of tissues and then fell asleep naturally in my arms. Al

l is well so far and the team is ready and waiting. We are sitting in the sun and testing out how this blog txting thing works. STOP

Just a quick update. All is well so far, no last minute surgeon vacation, and Leo is still healthy... They also got all his blood work sorted out and matched eventually. Those who know Dartmouth might be aware that they recently switched over to a new program and the resulting chaos has been funny to witness.   As long as it isn't at our expense...Although the surgery scheduling snafu definitely was a example of the mess the new system has created.  Speaking of schedule, here is what we know so far: On Monday we have to arrive there at 6:30, and they will probably take him and start the prep work by 7:30ish. After that the surgery is estimated at 8 hours, so we are looking at meeting him back at the PICU between 3 and 5ish. I have a feeling its going to be the longest 8 hours of my life. What happens scheduling wise after the surgery depends on Leo. How well he recovers etc... I also just wanted to explain a little about the Holy Unction service t...

Everything? Even if you aren't a vampire, blood should be on your mind. It is certainly on ours. It was the main topic of conversation during Leo's pre-op appointment yesterday. That and how blown away his neuro was by his development, head control, and otherwise irresistible chunky cuteness. She hadn't seen him in a while so we had to show off a bit. In a weak moment I inquired, "We do have to do this surgery...don't we??" (Insert wavering voice and shaky tone and you will be right on) And to my surprise, or perhaps not, since she has been the only doc that has ever had anything positive to say about Leo, she admitted without a doubt her belief that this surgery will not only fix those funky fluid things, but by relieving him of the handicap of his head weight he will just take off and start hitting those important physical milestones. Wow. His visiting nurses, who we have basically adopted into our family keep mentioning things like baby gates and making our...

 Since Leo's birth ten months ago there is a phrase that is uttered by family, friends, and well meaning strangers that follows the same script. "Gee," folks say to us, or perhaps "Golly, I really can't imagine how you do it!" So this is where I am usually stumped. Do what exactly? "Well, they say, looking a little confused and awkward, "Get up every morning, go about your life, umm be happy?" At this point I'm usually just as uncomfortable as they are, and it's hard to come up with a gentle answer. Because the truth of the matter is that until you are pushed, you don't really know how strong you can be. Because until you are actually asked to bear something, you can't really know how much, or how well you can do it. There is no way to explain to folks who are fortunate enough to never have been tested in such ways, how these trials of the heart and mind are actually strength giving, rather then the opposite. That you learn to ...

Those of you our dear readers and faithful Leo followers, who have had more than one child can perhaps relate to this phenomenon of having a totally different attitude towards your second child than your first. Though I know our case is not typical since our first also came into our world with a bang, wrecking havoc on carefully laid plans and ending with a stint in the NICU and a brand new scar on my previously unmarked tummy.  Leo, of course, blew that experience out of the water by the emotional trauma and damage, not to mention the loss of years off our lives through sheer stress and worry. Is it normal for siblings to try to one-up each other while still in utero? Hmm, food for thought. In any case, when Nika was born, I remember feeling, for the first time in my life, that my happiness, like a beacon for my very survival, was implanted in her tiny fragile body. That my heart had ripped itself out of its home of so many years and had taken up residence in this little squally b...