Uprising

Praise God, Avery's getting better every day and also getting harder and harder to manage as his motor skills are improving. He's starting to try to pull out his tubes, remove tape, and overall just realize his situation. He's slowly accepting the fact that he has a feeding tube and becoming less angry about it.

The referral process has already started to move us from here to a rehab hospital where we will stay and he will enter an intense rehab program. His next PLEX is scheduled for Tuesday next week, and depending on his condition, the doctors may order more or just leave #7 as the final. We still do not know when we will be released from here; most likely once the hospital doesn't need to perform anymore medical treatment.

His mouth is still shut, so we're hoping he can start to open his mouth and start to eat, or else the feeding tube will have to stay for a while longer.

Below are two charts I've been keeping on his progress:

The Hulk

Yesterday, Avery was the talk of the Neurology ward as he suddenly showed signs of recovery where he was able to comprehend our questions and react by pointing to various body parts (his tummy, his knee, mouth, nose, high five, etc.).  The team was quite excited and almost everyone had to come by to see him perform. It was very encouraging to see the entire staff genuinely happy with his progress.

A MRI was also conducted yesterday, where they wanted to see if the inflammation in the brain had subsided. The below image shows the MRI before PLEX had started (right) vs after 6 treatments (left). You can see the white areas have reduced dramatically but still have some ways to go. Additionally, the swelling on the right is clearly pressing against the two small black kidney bean looking areas that obviously have an averse affect on him.

The road ahead will be rough. Avery's still very easily agitated, experiences dystonia, cannot speak, move freely, walk, eat, grasp, is in pain, has tremors, etc. He's heavily medicated to treat the above symptoms. 
If anything throws him off, he becomes the HULK and is almost impossible to calm down / console. He becomes very angry with his situation and as a 3 year old, doesn't have the patience to see his situation through.

Pray that Caroline and I show love through patience and kindness (1 Corinthians 13:4) as its sometimes very difficult to reason with the HULK.

PLEX #7 - Cancelled

After spiking to 38 celcius last night, the night resident doctor came in to assess the situation. Not knowing the back story, the nurse ordered blood to be cultured, antibiotics to be started, and a chest X-Ray just to be sure he hadn't caught anything. 

While I agree that chances cannot be taken, anyone who has followed Avery's charts may not have reacted the same way. 37.5  - 37.7  has been Avery's normal temperature at the hospital along with a high heart rate and high blood pressure. I tried to refuse, but understood that the Hospital could not take the chance.

The Dialysis unit (overbooked) ended up cancelling his PLEX treatment this morning using the fever and antibiotics as a scapegoat to get out of treatment. Of course, Avery has no fever, but just to be sure, he will be on antibiotics for 48 hrs until his blood cultures come back.

Overall; major improvement since starting PLEX has not been observed, so delaying treatment #7 until next Tuesday is not necessarily the end of the world. We will use these next 6 days to get him some rest and relaxation, as busy days have overcrowded recovery days. We hope that we can work on his small improvements and mood to start the rehabilitation process. We also feel the medicine mixture is appropriate and he's calm enough to work with now.

Avery's sleeping for longer stretches now, and this morning was able move his right arm purposefully, giving a high five or pointing to my nose.

Watching a suffering child and being unable to help really makes me feel helpless and trains me to rely more and more on God for strength during this time of suffering. Since there is no one else to turn to, Jesus is the only person I can cast my cares to or give my burdens to. Without being completely helpless we will not depend on Jesus; our human nature will take over and start generating solutions or seeking answers to our problems.

I'm reminded of two verses from the Bible:

1 Peter 5:7
 Cast all your anxiety on him because he cares for you.

Matthew 11:28-30:
28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”

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.