No Easy Day:
Although I stole the tagline from a Navy Seal book I read a while back, I feel its an accurate description of each day we're at the hospital.

On Saturday night, God graciously gave Avery, Caroline, and myself a full night's rest at the expense of Dorothy's lost evening strolling Avery. It was almost too much, as I woke up with a bit of body pain as my body wasn't used to being at rest in one position for more than a couple hours at a time.

We figured with a full night's rest, Avery would be chippy the next day, but the pain and tremoring seemed to have gotten a bit out of control. His episodes (once started) would be inconsolable, and over the last two days, we've had nurses and doctors come from various wards to try to figure out what's going on with him.

As a result, we increased and added new meds, induced bowel movements, and gave baths and hot packs to try to calm the aggravated boy. We tried everything and became tired and frustrated as nothing would settle him. Avery also seemed to be able to power through the most sedating meds once he became angry; even the strongest meds had little effect on him if he was angry.

We are still trying everything we can to console him and figure out what is causing the pain / anger. The doctors are working with us on the drugs and therapy is also getting involved. Pray that God gives little Avery patience, as he's starting to become more and more aware of where he is, his situation, and his inability to do the things he used to. I sense at times he's becoming very angry and frustrated with what's happened to him and the long road to recovery. We are trying to explain to him that the time spent in the hospital is a necessary process for healing.

Last night, despite having only napped for 45 mins during the day and being obviously exhausted, he was unwilling to sleep with strong meds no matter how creative I got with the strolling. I handed him to my parents but they came back within 30 mins as Avery still refused to sleep. We broke out the serious medication at that point but after 1 hour (in the bed) he still would not sleep. Finally, after placing him back in the stroller, he fell asleep within a couple seconds. This was 12 am. By 03:20, the fire alarm woke us all up due to a triggered sprinkler at the loading dock. Since he was up, we gave him water, stool softener, Morphine, and Tylenol. I just about got him to sleep by 04:00 when the alarm went off again saying the false alarm has been lifted. He was up again and screaming, it was a tiring struggle until 05:00 (which was when his bloodwork needed to be done for PLEX at 08:00) so I kept walking him until we gave him some drowsy meds (Chloral Hydrate) and he finally fell asleep by 05:30 and slept until 07:15. PLEX ended up being delayed from 08:00 until 14:00...

The nurses and doctors tell us that sometimes they see kids get worse before they get better, so that was some comfort, but as we're on PLEX #6 today, the end is approaching and clinically he's not showing drastic differences.

This reminds me of the story of Joseph in Genesis 37. Joseph was 17 when he was sold as a slave and 30 when Pharaoh put him in power. That's a LONG time to be waiting on God, and despite his bleak situation in prison with seemingly hopelessness, he waited patiently on God for the unveiling of His plan.

These past two days have been a roller coaster ride. Avery has seemingly taken a couple of steps back rather than improving. His dystonia has gotten worse and its just difficult to watch as he's rigoring in inconsolable pain. Coincidentally, he hadn't had a bowel movement in a day, which we "think" could have been a culprit to his pain. We tried multiple times to get him to poo with no luck. He continued to shake himself to exhaustion and frustration.

After two difficult nights, and an agonizing PLEX treatment yesterday, the doctors determined he needed to receive a blood transfusion to boost his Hemoglobin levels.

This morning, Avery (still inconsolable) had an enormous bowel movement 10-15 minutes before the head neurologist came in to check on him. We collectively decided that all the medication adjustments and adjustments to plans for treatment were overruled by trying to maintain regular bowel movements with the help of stool softener. 
She told us that bed ridden inactive kids have particular difficulty with bowel movements which can cause immense gastro intestinal pain - exacerbated by encephalomyetits.

Coincidentally, he was very calm after the bowel movement and calm for the blood transfusion that completed without complications.

Through it all, God's consoled us by placing nuggets of hope in our hearts by reminding us that Avery is in His hands and in his care with stories various patients and staff of SickKids have shared with us.
The PLEX staff shared stories and pictures of patients who have made miraculous recoveries, stating that paralyzed bed ridden patients who've received PLEX come walking in to pay a visit a year later. In another case, a mother assured us not to worry as her son who had a similar experience of constant fevers and encephalitis until he was 8 years of age had made a full recovery.

Matthew 6:25-27,33-34
25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life[e]?"...33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Philippians 4:6-8
6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

God has given us peace in our hearts and a real life definition of what it means to truly surrender our desires and agenda to Him. "Give us today our daily bread" has new meaning to us. With each day's unpredictable complications generating more anxiety and worry, we can only ask for God's provision, one day at a time.

Last night and today have been good.

The Neurologists are happy with Avery's progress and the Occupational Therapist and Physio Therapist are working hard to get Avery eating and mobile again. They did say its going to be a long road to recovery, but overall there is progress and the outlook is positive.

We're increasing the dosage of Baclofen (muscle relaxant) so that he can be more relaxed and we can preserve his joints and tendons for when he's able to voluntarily move them again.

Avery is sometimes able to turn his head ever so slightly towards who he wants to look at, so that's something worth celebrating!

His updated medication list is shorter now:

Tylenol - pain management; (on demand)
Lansoprazole - antacid (09:00)
CloBAzam - relaxant and anti seizure (09:00, 21:00)
Baclofen - muscle relaxant (09:00. 15:00, 21:00) upped dosage
Melatonin - sleep aid (21:00)
Ativan - anti seizure relaxant (pre-plex)
Benadryl - drowsiness (during plex)

1 Thessalonians 5:18  "Give thanks in all circumstances; for this is God’s will for you in Christ Jesus."

Despite this situation we're in, there is really a lot to be thankful for:

• Tiffany, who insisted we go to St. Joesph's Emergency on Sunday night, which lead to a referral to Sick Kids (as we were sent home from Sick Kids Emergency that same Sunday morning and told Avery just needed rest)
• Sick Kids, for having round the clock care, an amazing team, and truly the best research available in the GTA
• The Canadian health care system, such that we have not had to worry about finances
• Patricia (Caroline's sister), for spending her precious vacation with us every day in the hospital and even extending her vacation to be here longer
• My sister and brother in law (Kat and Adam) who have been visiting every day despite being super busy at work and busy wtih their own lives
• My parents, for making us home cooked food and delivering it every day, and also for strolling avery to sleep
• Caroline's mom, for bringing us home cooked food, flying over from Hong Kong to support us, and strolling avery to sleep
• Dorothy, for puling a marathon all nighter strolling avery (she watched 3 movies back to back) so we could sleep
• My Aunt Katie & Uncle Dick, for organizing all administration for us at home
• All the friends and family who are loving on us, visiting us, bringing us stuff, and are caring for us
• All the prayer warriors who are lifting Avery's situation up to the Lord and pleading with God for healing
• Sick Kids free wifi

Overall, what I've seen is that God Loves Avery soo much and its evident by his enormous fan club rooting for him and God's hand at healing. God's enlisted an army to fight for Avery...God's name has been glorified.

We had a difficult night last night. Avery only slept a couple hours, was very unsettled, and his blood work this morning showed an even lower hemoglobin count (79) and a high potassium amount (5.7) which disqualifies him from his PLEX treatment until it's lowered to 5.5.

The Dialysis team is also fully booked today, so if we don't get his potassium down immediatley, they wont have a spot for him.

We're going to flush his system with saline and see if his levels balance out in time for the PLEX to happen.

Pls pray for God's orchestration through these complications

UPDATE: Gods answers prayers! turns out poking him with a needle to draw blood yields inaccurate results as he tenses up and the sample is skewed. The saline flush was a bit gratuitous in fact and we have asked that the nurses draw blood from the CVL line instead.

The second draw (from the CVL line) showed lower potassium (4.7) and higher hemoglobin (89) and lower white blood cells (11). The PLEX team was able to accommodate us and we're doing PLEX #4 is on!

UPDATE #2: We ended PLEX 8 minutes early so he didn't get the full treatment. His shaking got pretty violent during the end of the treatment so we decided to stop. He ended up settling down once we put in back in his stroller. It's unclear whether or not the shaking was induced by him being upset and overtired. Friday's PLEX will happen in the stroller.

Today, Avery's white blood cell count is down to 13 from 16 yesterday (good news). He has been hovering in the mid-teens for a while now. This means, if his body stops fighting itself, his brain may have a chance to subside in swelling.

Additionally, his hemoglobin level dropped from 84 to 83 (not an improvement but still above the threshold (70) for blood transfusion), so nothing too alarming there.

So far, he seems to be able to move his limbs ever so slightly, so we hope those movements are voluntary and progress in the right direction.

PLEX has been extended to 7 treatments total, so we're done 3 for now and will continue into next week.

Avery went outside on the street for the first time since July 17th! However, I think there was too much activity for him and I think he was a bit overwhelmed. We made one loop around the hospital and came back inside. He didn't seem interested in any of the things he was previously interested in even though they were running a farmers market on the roundabout.

Today Avery had his third PLEX treatment that went a little less smoothly than the second treatment mainly because of the timing of the ativan given was too early, and wore off by the time the PLEX started. He was awake and agitated during most of the treatment, but Caroline and I were able to calm his nerves with Peppa Pig while getting a massage.

His bloodwork showed a lowered Hemoglobin count which (if he shows signs of dropping any more this evening) will need to do a blood transfusion to replace the count. I have already signed the papers to conduct the transfusion in the event he needs it.

Please pray that his body comes around and that he does not need to do transfusion tomorrow.

Other than that, he's had a decent day (with a long nap after PLEX) with the occasional fits of tremors, but we feel its triggered first by him being upset about something, then it starts running uncontrollable until we can distract him.

He has been the most vocal in a while, and was able to lift his arms to have me pick him up (but that was just one time).

His white cell count hasn't dropped since the steroids / IVIG / PLEX, so his body is still fighting itself. Pray his body starts to reboot so its stops fighting itself.

I've charted his ability to move over time and today, his eyes and arms are the only thing that have improved since we've been admitted.