Skip to main content

Intensive Care Christmas Photo Dump

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 happening from the chest drain, or maybe because of some Christmas magic, Leo seemed to perk up a bit and focus and recognize his favorite people. He ate a bowl of chicken soup and played with his mozart cube. Then to the total amazement of his weary mum, he smiled, not once, but three times at the silly antics of his uncle and sister. These were the first smiles to be had since he got sick several weeks ago. This was the only present I wanted tonight and it was awesome.
Because of the holiday, tests and labs are harder to obtain so the docs are going to get creative. In the morning they will put in a radioactive trace dye into his shunt valve and then follow the path of the fluid through his body with a special scanner. The result of this will hopefully put to rest once and for all the question of wether or not his shunt is emptying into his lungs instead of his abdominal cavity. Testing the fluid for cerebral spinal fluid cells has to be mailed out and the results would only get back to us on Monday next. This is not acceptable because everyday the chest tube is in, is a higher risk for infection.
The depakote allergy reaction is also proving illusive with negative results within the fluid tests, but the docs aren't discounting it totally yet. Honestly they have nothing else to work with at this point!

Anyway the questions continue and meanwhile we have a very sick little lion on our hands.
But the pluses right now is that his lungs are doing great and have inflated fine after their experience of being squashed and collapsed like in a sardine can. Leo is breathing room air just fine, and his stats are perfect. Big plus there. Also the plus is that he hasn't been getting worse, he hasn't been getting a whole lot better, but there haven't been any sharp declines. He ate some soup, and smiled. All very good things.

Please keep him in your prayers as we continue to wade through this mystery with the PICU team, and so far, there are no plans to send him home. I have a feeling he will be moved into the Pedi Ward however if he continues to stabilize, but if the problem is with the shunt, he will be having revision surgery and will continue on in the intensive care unit. To be honest, we are more used to it then the ward...

Here are some photos from the past couple days...
Thank you to all who have been lifting up our Lion in prayer. He breathes on the wings of your efforts! Thank you, thank you, thank you!









Comments

  1. Keeping you in prayer. Wishing you were all together for Christmas, but thankful for the smiles and the stability!

    ReplyDelete
  2. Keeping Leo and your whole family in our prayers.

    ReplyDelete
  3. Lots of love and Christmas wishes to the Little Lion and his absolutely steadfast family. Jesus is the same...yesterday, today and forever. God bless all of you in your time of need and during this splendid celebration of our Lord's birth. Hopefully a new beginning for all. xoxoxoxoxoxoxoxo

    ReplyDelete

Post a Comment

Popular posts from this blog

With Mixed Feelings

So for the past couple weeks my feed has been filled with the "back to school" and "end of summer" and "beginning of parental freedom from their annoying offspring" photos. It's ok, I totally get it. Another year, another back to school pic, another notch in the door jamb, and another chapter of growth and development with junior. Look at him go! Or not, as the case may be for many children. According to the CDC (Centers for Disease control and Prevention) one in six children has one...a developmental disability. A stamp of "not normal" across their foreheads. A number. A check mark in a box. My kid is one of them. I heard a brief segment on NPR that enticingly started out with the title of developmental delays on the rise, a 17% increase over the last twelve years. And though I turned up the volume the segment only talked about how it's probably only due to poverty, and it's only the upper classes that actually pursue diagnosis...

Pharmaceutical Fallout

"Back to the hospital?! You're joking right?!" I'm sure you guys are wondering what's been up with the Lion this past week after our worrisome VEEG adventure.  To tell you the truth, I feel like I've been taking shots of Leo's drugs and consequently feel dull and numb and just plain depressed. That is now of course, two days ago I was running high on adrenalin and resembled a charging rhino. I'll tell you why: So after being put on his new drug, Trileptal, Leo definitely started having a cessation of seizure activity, unfortunately however, he also started having severe headaches, photophobia, inconsolable crying and then in the last couple of days, a rash on his thighs, face, and hands. Just as an FYI the word "rash" is a magic word that will open the doors of the medical castle faster and slicker than a trojan horse. It's true, one does not mess about with allergic reactions. Day 1 Day 2 (rash got progressively ang...

The School Bus As Metaphor

A school bus can mean all sorts of different things: dread, boredom, excitement, responsibility, change...it means something different to all of us. I was primarily homeschooled as a kid, and though I preferred that, there was still an element of desire and curiosity for me every time I saw a school bus when I was young.  I couldn't help but wonder what it would have been like to be part of the school bus world. Of course I didn't have to wonder about it for very long because I did, in many ways, have the ideal education. There was that time I took the winter off from school instead of summer to practice my extra curricular work which was...downhill skiing and snowboarding. Then there was the part-time jobs at the local farms that I was able to do because of my own set and very flexible school hours. To clarify, because it sounds like I didn't do any academics at all in the above two sentences, I did. Lots. Tons. But I did them efficiently and completely independently, e...