Surgery completed

Shaun is finally back in the PICU with his Mommy! 

The surgery was delayed 3 hours - for those of us who have been anxiously waiting for news - but Praise the Lord, it was without complication.  These next three days are critical for Shaun's airway, please keep him in your prayers!  Also, pray for Denise as she has a lot to learn: trach care and about the ventilator.

UVA Update: Tracheostomy Today

Shaun is scheduled to have surgery today at 12:00pm  (Eastern Standard Time... for those around the world... :)  

During the procedure, the doctors will place the tracheostomy, close Shaun's glottis, and do a muscle biopsy to look for more answers in Shaun's disease.  For the next three days post-surgery, Shaun's airway will be considered critical.   

Let's pray for Shaun, and the rest of the Steyaert family.  Pray for the doctors performing the procedure and managing Shaun's post-op care.  for Shaun to be able to wake up easily from the anesthesia (it has been difficult in the past), and to get answers from the muscle biopsy.

Our brother, Caleb,  flew in from Oklahoma and will be with Denise and Shaun for the next few days.  Denise is so grateful to have him there with her!

Denise and Peter have also expressed such gratitude and thankfulness for the many visitors, family, and friends that are supporting their family at this time.

Krissy and Shaun during his 24 hour EEG

Vicki and Angela visit Shaun and Denise!

For just an general update: Shaun is still diagnosed with "unconfirmed mitochondrial disease" while other tests results are still pending for a more firm diagnosis.  The neurological events that began occurring earlier this week have been determined to be tremors (chorea) instead of seizures. The doctors see this as disease progression and are working on the right combo of meds to control it.

"Be joyful in hope, patient in affliction, faithful in prayer."  

Romans 12:12

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

UVA Update: waiting in the PICU

Shaun with his "school teacher" in the PICU: she reads stories, teaches sign language, and stimulates his learning. 

After meeting with Ear, Nose, and Throat (ENT) Doctor (and all the other doctors), Shaun has shown that he is unable to protect his airway or elicit a good cough reflex.  Therefore, it has been decided that it would be best for Shaun to get a tracheostomy.  When the ENT performs this procedure, the Doctor will also close off his glottis so that he won't have secretions come down into his airway and cause infections.  While the closure will keep him from aspirating, it could also allow him to possibly start to take food orally again.  Hopefully, this will protect Shaun from these pneumonias and keep them out of the hospital!

Please pray for the procedure to be done without complications, for Dr. Early performing procedure, and for a quick recovery time for Shaun.  Pray also for Denise, Peter, and any other care-givers to quickly learn and adjust to the management of the tracheostomy - and for Stephen and Scottie to adjust well to the change in appearance that their brother will have.

Shaun and Denise have really appreciated and enjoyed several visitors -- especially Daddy -- coming to visit.  Shaun has been doing better, and while he is a candidate to move back to the peds floor - they are going to keep them settled in the PICU over the weekend in anticipation of the need to return after Shaun gets the trach on Monday.  Denise has her cell phone, so you can call, text, e-mail, or Facebook her!

Sleeping sweetly

Aspiration Pneumonia at UVA

Shaun developed a fever and difficulty breathing this past weekend and on Monday went to the INOVA ER to get checked out.  They were sent home with antibiotics and the next day UVA doctors said they wanted him to come down.  They were supposed to be going there on Tuesday for diagnostic testing and a care plan, but when they got there they Shaun was too sick and ended up being admitted with aspiration pneumonia and a collapsing airway. Again.

Right now the first concern is to get Shaun through this bout of pneumonia.  He was on the peds floor requiring high flow oxygen, up to 7L per nasal cannula and a blow-by mask for his mouth, and his oxygenation saturation level was still dropping lower than they should be.   The nighttime PICU doctor just made the decision to transfer Shaun to the PICU due to the possibility of him requiring CPAP to keep his O2 sats where they need to be - especially when he is sleeping. 

Since arrival to UVA, Shaun has been seen by the pulmonologists, neurologists, and gastrointestional (GI) doctors, speech therapy, physical therapy, occupational therapy, and the palliative care team.  This team of health care workers are working on a plan of action for Shaun: to keep him from being in the hospital every other week and to see how to move forward from this point.  

One of the main factors would be to prevent the frequent aspiration from occurring. The  GI doctors think that Shaun is aspirating from his oral secretions while the pulmonologists think that he is aspirating his stomach contents.  They will hopefully do a milk contrast study to determine the cause of aspiration and then take the necessary precautions to prevent further aspiration (anywhere from a Nissen fundoplication to a tracheostomy has been laid out as a possible solution).  

As you can imagine... this is a lot.  

Denise and Peter are taking it as it comes... and as hard as it is on them - Stephen and (especially) Scottie are really feeling the affects of Shaun's illnesses and all that it means for their family.  There are so many stressors on them at this time (Shaun's repeated illnesses, Mommy being away for extended period of times, still being out of their home), the entire Steyaert family needs prayer and support.  I know they are continuously overwhelmed by so many who have shown them love with meals, child care, hospitality - and they are so very grateful.  Please continue to pray for Shaun, Denise, Peter, Stephen, and Scottie.

In and Out again

Shaun and Denise are back "home" (at a friend's house.. see the Steyaert's blog) after another hospitalization for pneumonia at Winchester Medical Center.  He is still recovering from this last illness but loving Mommy snuggles, talking to Daddy, and getting attention from his brothers.