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!

A new plan...

Here are the updates from Denise's facebook page today:

New plan for Shaun this morning. We are going to start to ween him off the pentobarbitol as it has long term side effects on the body (especially the heart and edema) and he has been in a "restful" state for a while now. The new meds he is on helped lessen the seizure activity last night, not fully taking it away, but helping. It is time to see what his body tells us, mainly his brain, and we will go from there. This is a multiday process so keep praying for our little fighter!

During the day they were able to back off the pentobarbitol some (not completely) and see some increased activity.  Shaun - and Denise (and our cousin Mike, staying with Denise at the hospital) - enjoyed having many visitors come.. Shaun's Great Grandad Cole, Great Grammy Pat, Great Aunt Karen, Grandad (Denise's dad), Grandmomma, and Aunt Christiana were among those who visited.

Denise, the ever watchful mother, noticed that Shaun would have some more active periods that lined up increased and more prolonged (than the seizures) activity on the EEG.  She inquired about this and so tonight the neurologist came to review Shaun's EEG readings for the entire day.

Denise updated us again tonight on facebook with the new plan based on what the neurologist found:
One step forward and two steps back... Shaun seemed to be doing well until I noticed longer awake periods with scrambles in the wave patterns. I asked the docs what it meant (good or bad) and the news was that they would eventually build into seizures again. So new plan again : keep him at this dose of pentobarbital for now, other meds stay the same and load him with Topamax for the next 2-3 days. Shaun always beats to his own drum and we just need to listen and get on the same rhythm. Pray for us to have a breakthrough soon. Thanks.

As Shaun fights on, we join him in this fight as we pray for this precious life.  Our hope is in the Lord, who is our refuge and strength, an ever-present help in trouble (Psalm 46).  While we cry out to God and implore him on Shaun's behalf, we trust that His will will be done on earth as it is in Heaven.

Thank-you for taking the time to pray and send encouragement to Denise, Peter, and the Steyaert family.

UVA Update: More Visitors and Neurological testing

Denise and Shaun were delighted to see Erin Sullivan - and she brought with her Shaun's big brothers to see him before his surgery scheduled for tomorrow.

While they were visiting, Shaun had two neurological episodes - which, unfortunately, abruptly cut their visit short.

Because of these episodes, the tracheostomy procedure is now on hold until later in the week for neurological testing.   Shaun will have a 24 hour continuous EEG on Monday, and they have taken urine and blood labs to find out what is going on.

EEG taken earlier this week

Please continue to pray for answers, wisdom for doctors, healing for Shaun, rest for Denise, and peace that God is in control.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."  

Phillippians 4:6-7

Tests...

Yesterday, Shaun had an EEG to watch his brain waves. This is just one of the many tests that were ordered when we went to Cleveland to meet the specialist. It started with sleep deprivation; Shaun had to stay awake until 1 am then could sleep until 4 am and then had to stay awake until the test. We were scheduled for 8 am but didn't end up getting to the clinic until 9:30 because the order got lost somewhere between the fax machine in Woodstock and the one in Winchester... maybe its in cyberspace somewhere..

 Shaun quickly fell asleep when we were in the room and they were able to hook him up with ease.

 The test lasted around 45 minutes and both mom and boy slept. They then wanted to get some awake footage too, but Shaun was a drowsy customer. We are trying to get back on normal schedule now but he is wanting to be up in the middle of the night... Pray for sleep!!

Today, we went for an ultrasound of his abdomen and renal system. Shaun was once again a trooper as they require fasting for 4 hours prior and a big shot of 6 oz of water prior to the test. He wanted to play in the gel so Mom had to hold his hands.

The technician couldn't tell me much but she did say that all his organs are in the right spot and that they look to be the correct size! Praise God.

Now for the rest of the tests...