The past few days in the PICU...

Monday brought more waiting and watching the EEG with Shaun to see if the anticonvulsant medication combination would work and they could go down on the pentobarbital.  Shaun and Denise had more visitors today!  Denise's besties, Becca and Alisha came to visit to bring love, "girl time", and comic relief to the PICU.

They also brought newborn Sarah, Alisha's daughter, with them -- the PICU's youngest visitor.  The hospital made a special allowance for little Sarah to come visit Shaun.

Here is a description about their visit from Alisha:
Becca and I went down to UVA today to visit our precious friend Denise and her even more precious son Shaun today. It was such a privilege and a blessing to be able to go. And, Sarah not only got to go too, but she was allowed back in the PICU to visit her future husband. The day was a comedy of errors of sorts and we all laughed so hard that our stomachs will be sore tomorrow. God is so good, because it was just the pressure release that we all needed. It involved me spewing coffee all over the visitors check in area (including Sarah), though she still did not wake in the moby, spilling soy sauce all over me and Sarah (yes, me again), and Sarah spitting up....in my mouth. Not to mention all the drinks and the bathroom trips. Oh, and then there were the burp clothes. We even got to go out to Pho with Denise Steyaert and Mikey, Denise's cousin. Shaun appeared so peaceful. What a pleasure and blessing to be able to see him and visit with him. And steal a few kisses.  we got to draw on his window and write on links for his chains of love. It was very difficult though to not be able to scoop him up in my arms. I cannot even begin to fathom how hard it must be for his mama not to be able to pick him up. We were also able to take Shaun and Denise special shirts and onesies. Thanks to Donna and Rachel who embroidered them. And thanks to Donna, Rachel, Tori, and Abby for watching my three older kiddos so that I could go. We love you Denise and we love you Shaun!!! Thank you for letting us visit. Auntie will see you again soon!!!

Monday also brought two more special -surprise- visitors, Mrs. Puff and Brooke.. my husband's mother and sister.  While they were there, Shaun had a central line placed (hence the masks in the picture below) to help his medicines go in easier.    They were able to love and encourage Denise and Shaun IN PERSON for Jarrod and me, and add to the "chains of love" around Shaun's crib.

Brooke adding "Chains of Love" to the room

On Tuesday - big news! The neurologists turned down the pentobarbital drip by half.. and Shaun tolerated it well.  What a rock star! The day was filled with more watching and waiting.  BUT, good news... more visitors! Angela and Vicki came to brighten the day - writing on Shaun's window and bringing balloons, hugs, and prayers.

Wednesday... today.. was a big day for Shaun.  Shaun's healthcare team was able to cut his pentobarbital down to a very low dose (more about that later) and completely wean him off of dopamine - a medication to help his blood pressure stay where it needs to be.  Hooray!

Shaun wished his friend, Waverly, a Happy 2nd Birthday!

AND.. more visitors! Mr. Z and Lisa came to spend time with Shaun and Denise. It was great to see them and really just so special to have so many people making the trip to UVA to visit our sweet Shaunie.

As I mentioned, the pentobarbital - a medication that is keeping Shaun in an induced coma - is getting weaned down and now at a very low dose and Shaun has been able to tolerate it without the return of generalized seizures. Shaun's body is slowly starting to wake up - even taking a few breaths over the ventilator! This was very encouraging. The EEG has remained clear... but then Denise noticed an occasional rhythmic tick in Shaun's arm... which indicates a focal seizure - not the generalized seizures that he has been having.  It is something to watch and PRAY for.. and if it becomes anything more than it is right now - they will put him back up on the pentobarbital.  Shaun obviously can't live on this coma-inducing medication - so the plan is to watch him and maintain where he is right now in the effort to wean him off completely and will re-assess if anything changes.  Shaun's tired Mommy is ever vigilant, sitting up on "seizure watch" tonight.  Let's join her in prayer that Shaun makes it through the night without any unwanted activity.

A look ahead:
Tomorrow Denise is looking forward to Stephen and Scottie visiting again along with good friend, Krissy.  On Friday she has a meeting with the neurology team to review Shaun's case.  Let's pray for these things.

And now, Shaun, as you sleep, we pray that God will "command his angels concerning you to guard you in all your ways" (Psalm 91). We love you Super Shaunie-boy!