PICU Happenings


We'll start this post with a Pop Quiz (blame it on the teacher in me...)

No news for a few days means:
A) There is no "significant" medical update
B) Days when the waiting feels long and hard are not the best days to update a public forum
C) The days have been unbelievably full
D) All of the above

Correct Answer:  D

Nathan is actually not showing any progress in the right direction since he was taken off the ventilator last Wed.  In fact, he has been teeter-tottering as to whether or not he needs to be put back on.  As of yesterday treatments and efforts to trouble shoot why he is still working so hard to breath even with significant oxygen support were really ramped up.

We actually haven't even been able to do the study that will give us an indicator of how successful the digestive surgery was because they are unable to conduct the study on the type and amount of oxygen support Nathan is currently receiving.  We came to the hospital to address an eating concern, which seems pretty primary.  But breathing trumps eating every time.  As long as he is on this specific type of oxygen support (called Vapo-therm) Nathan will have to remain the in PICU

It's actually been a pretty hard few days emotionally.  The waiting with no progress and no diagnosis, the seriousness of the concerns and potential ramifications for what seems like the zillionth time since October has felt heavy.   Please keep praying for endurance for Jonny and myself.

Once again, a montage of people have rallied to care for us in so many creative, practical and helpful ways.  Thank you. 

Silver Lining: Since Nathan wasn't on the vent so long this time he weened from his drugs very well!  Surprisingly, even as  he is getting the oxygen pushed into his nose at a pretty high volume and still working hard to breathe, he is being as pleasant as he possibly can be and trying to make the most of his time in the hospital bed.  Here are a few videos to prove it.  (Please forgive my adoring/slightly annoying "Mom voice".)








Comments

  1. Caroline @ In Due TimeApril 29, 2014 at 9:39 PM

    Praying for strength and endurance as well as supernatural healing and comfort for Nathan

    ReplyDelete
  2. UnknownApril 30, 2014 at 12:13 PM

    Loved the videos! No apologies needed for the Mommy Voice; it's so sweet :-) Praying for Nathan's lungs/breathing to improve. May God's grace carry you and gird you with strength.

    ReplyDelete
  3. KeelyApril 30, 2014 at 4:41 PM

    We love him so MUCH!! It's almost strange, since I still have never actually met him in person. But I LOVE him!! And I love you guys. We are praying with you and for you, for strength and endurance and patience and healing.

    ReplyDelete
  4. Dave SmaleyMay 1, 2014 at 8:29 AM

    Awesome videos and a great Mommy voice!!! keep it up. We will pray for you two to endure during this difficult time and for Nathan to gain strength!!!

    ReplyDelete

Post a Comment

Popular posts from this blog

Surgery in T-Minus 5 Weeks

Image
I’m not exactly sure what it is about me, but I just have not been able to bring myself to write this update.  It’s almost like a subconscious rebellion…  We’ve known this day would come since we were in the NICU in Ohio…  We thought it would come last year… And yet, the fact that it is finally time for the MOST major surgery/medical procedure in a series of major medical procedures is just a bit surreal.   As of this moment, May 7th is Go Day.   Just a dude and his dog :) This post will be pretty factual as I am still processing a lot of my own emotions.  At the same time, I am humbled and thankful to my core for the army of people who have and continue to love and pray for Nathan and our family.  There is only one path ahead for my son, for my heart, for our family.   In light of that, we want to share and ask for your prayers. On May 7th, Nay will have a RED device installed into/onto his face.  RED stands for Rigid External Distraction - You can click here to get a bunch of images
Read more

It's Been a Decade

Image
Some memories are sharper than others… February 9th, 2014 was my 29th birthday and Nathan was in the middle of a 7 consecutive week run in the ICU, for most of which he was intubated.  About 80% of his 4 months had been spent in hospitals and he had already undergone several surgeries of increasing intensity.   This stay was, quite literally, a fight for his life and the questions about quality of life were (understandably and appropriately) met by Dr’s with vague answers, no promises and even uncomfortable and compassionate murmurs of “IF he makes it past 2….”     That year, my birthday fell on a snowy Sunday.   I remember waking that morning and staring blankly out of the ICU window into the thick, cold, grey, relentless snow of an Ohio February.   The only thing more bleak was my heart as I called Jonny, cried and then let him go so that he could take care of Madison (not yet two) and then get to church…. It was, after all, a Sunday.   I’m not sure how much time passed, but it could
Read more

You Are Loved and You Were Wanted

Image
Little One, You are loved and you were wanted .  Let’s start there.  Your dad and I talked about you for quite a long time, actually.  After the first year/year and a half of your brother’s life and the intensity of fighting for both his life and quality of life it took more time, more conversations, more prayer to be sure that we were ready for a third child in our family.  Then, in ways that are more easily felt than articulated we both sensed a confident assurance that yes indeed, we were ready.  And so when a little plastic stick told us of your existence, we were ecstatic! The first time we saw you on a little screen we marveled and our vision blurred with rejoicing as we saw your little, tiny heart beating fast.  We knew how deeply we love your big sister and brother and instantly our hearts expanded as they filled with that same love for you.  Telling your 3 year old sister you were coming was pure joy!  She was so excited!  In fact, she would tell everyone (cashiers, stra
Read more