Skip to main content

Barrel Bottom Dance

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 course, because of the little matter of the hole in his chest and the confusion of fluids, so they may have to externalize the shunt drain from his head to see how things start drying up. Boy will have several leaky spots, but hopefully within a couple more days the worst will be over and he can start really focusing on healing.
Thanks for ALL the crazy love and prayers heading Leo's way!

"Fix me docs so I can get back to my band!"

(The blue hair is a result of an EEG this morning as a last ditch stalling effort by the docs to keep us from going ape from the lack of progress. The test was normal. 

Comments

  1. Amen for answers! More prayers coming your way for a timely and supremely successful surgery. Love, Elaine

    ReplyDelete
  2. Keeping you all and this precious boy in my prayers. I'm so glad you have some answers at last.

    ReplyDelete
  3. God bless our dear Lion and his awesome parents!

    ReplyDelete
  4. Lookin' good, Leo! LOL. (Love the blue hair and glad you got a picture of it.) So glad you have an answer!

    ReplyDelete
  5. He is so beautiful!!! Praying for all of you.

    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...

Kinda Like 'Nam.

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 ...

Leo Lessons Part 1.

It's almost like Justin and I are stuck in this super advanced parenting class where Leo is the teacher, and our life is the classroom. Before Leo we thought we had credit we could transfer in from our previous baby/kid class, but we have found out that our old credits aren't applicable. Now we are in the crash course like it or not, and failing isn't an option. So we try not to sweat bullets and handle each new assignment he gives us with optimism. On our good days anyway. On our bad days, at least we have the notes we kept from previous successes to console ourselves with. Sometimes it helps.