Lonnie and I just got home from the hospital. Sheldon had a pretty busy day today so the evening report is that he is tired. We can't say often enough how much we appreciate all the prayers and support for Sheldon. The staff at PICU have been amazing! Sheldon is getting stronger every day and is giving us high 5's the thumbs ups! He smiles at Lonnie's "jokes" which must mean he still has a ways to go before he's better! Of course, the breathing tube is painful for him and we are all praying that the swelling goes down by monday so it can be removed.
Julie

Sheldon's first word...

Well, not in the traditional sense, but I consider it his first word. This afternoon Sheldon was given a white board and marker to write us a message. His first word... "Crystal." It was amazing! I am so honored. To be fair, the nurses/physiotherapists asked him who I was and he wrote the answer, so I guess I should not let my ego get too inflated. When mom asked him to write how he was feeling, Sheldon wrote "I feel good." What a trooper.

He is looking much better again today. He sat up for about 45 minutes this afternoon and had a hair wash. Despite all this, Sheldon is still very weak and these activities tired him out quite a bit. He has some extra motivation to get well though. As I was leaving his room they wheeled in a Nintendo console... I suspect he will be "pwning" Andrew and Lonnie at racing games in the near future.

As for the airway - it is still very swollen. Please continue to pray that Sheldon's breathing will improve and that the respirator can be removed as planned on Monday.

A few more days

Sheldon's airway is still very swollen today. Doctors removed the respirator again this morning to examine him and were able to reinsert the tubes (there was some concern that the swelling would worsen, forcing them to conduct a tracheotomy). The doctors prescribed another few days of rest before trying again. They are not sure how much (if any) long term damage will be done to Sheldon's airway as a result of the swelling.

Sheldon is more peaceful than he was in the first hours/days of "waking up" but still wants the security of familiar faces around him. This has been a very frightening experience for him. The staff in the PICU are very kind, and have allowed the family to stay with Sheldon as much as possible. We are all very grateful for this, and feel that it helps to relieve some of Sheldon's stress.

-Crystal

The Airway

Sheldon was removed again from the respirator today, and this time the doctors realized that his throat had swollen almost shut. Obviously this made breathing difficult for Sheldon, so they quickly put him back on the machine. Tomorrow at 7:15AM, they will remove it again (Sheldon will be out cold), only this time they will have a nose and throat specialist on hand to examine Sheldon and try to figure out what's wrong.

Our impression of Sheldon today was that he has continued to improve in small ways. He moves around more, and all the IV's have been disconnected. He's still on a few drugs, but the removal of most of the IV lines seems to make a big difference.

Today Ben and Viola had their mail delivered to them, and found that a set of math problems had been sent to Sheldon, complete with a note on the top for Sheldon to show all his work!! No mercy from Sheldon's teachers, I guess... We might have to give him a hand with those, though. Does it count as cheating if we write down the answers based on what we think Sheldon is telling us?

Pardon me while I ramble. Medical update is done, more tomorrow.

The PICU is a strange, sad place. It reminds me of an airport, in a way. You're all there with something in common, but the meaning of time changes. Time is important, but not counted the same way as the rest of the world counts it. It's not day or night or lunchtime, just the time between important events. There are many very sick kids (or babies) there, and distressed families camping in the little waiting room. My own tiny little one-year old daughter runs around oblivious in her bright pink sleeper, standing in sharp contrast against the tension, but to me she makes the horror of what those families are going through more real. Ben and Viola so far have maintained an amazing outlook through this ordeal, and their faith is strong.

Off again, on again

The medical staff assessed Sheldon this morning and it looked like he was ready for another try at breathing on his own. They removed the respirator at around noon, but had to put it back in shortly after. His throat was too swollen to breath properly. The medical staff have called an ear, nose and throat specialist to evaluate Sheldon to see what can be done about the swelling.

Please continue praying that Sheldon will start to regain strength. It seems as though he has "stayed the same" for awhile now, which is sometimes discouraging. I guess it is important to remember the amazing things that have already happened and to be patient. As Andrew said in a previous post, we are watching and waiting... God has begun a great miracle and we trust him to complete it (however and whenever he chooses).

-Crystal

Good morning

Sheldon had another good night. He is getting medication at night to help him sleep, which also has the side effect of helping mom and dad sleep. It sounds like today will be a busy day - there are a few tests scheduled (not sure about details) and more lung exercises. I'll keep you all posted as I learn more.

-Crystal

Not much to add

Sheldon is much the same as yesterday. We coaxed a smile (or at least a slight turning up at the sides of his mouth) out of him, and he gave us a little goodbye wave today, but he is very weak. The doctors still haven't converged on a final diagnosis, but the biopsy has been postponed indefinitely as long as he keeps improving.

Take a deep breath, Sheldon!

Sheldon is still moving in the right direction! It is wonderful to see him awake again and communicating a little bit.

The big challenge for today (and the next few days) is to get Sheldon breathing on his own again. The plan is to give him another little test today by reducing the help he gets from the respirator and watching to see how he manages. There seems to be a fine balance between letting his body rest and heal and pushing him a little bit so that he can actually get stronger.

-Crystal

Value Added

A joke... one of the many sent by faithful fans, for Sheldon. I couldn't resist posting. Thanks everyone for the help keeping the ICU team going!

Q. How do you make a tissue dance?
A. Put a little boogie in it!

Better and Better

I'm happy to report that Sheldon continues to improve. We sat with him for a while today and chatted at him. He shakes his head or nods in response, sometimes shrugging his shoulders. He would look at photos as Crystal held them out. It is basically a huge change from a few days ago when he was completely comatose. Everyone who sees him is immensely encouraged.

The respirator Sheldon is on is an amazing piece of equipment. As well as helping him breathe, it allows him to choose when to breathe,regulating the total amount of oxygen he gets, and keeps track of how much work he is doing himself. It also is able to "exercise" his breathing muscles in a controlled fashion. Ben dragged all the equipment Sheldon was hooked up to around into his field of view and explained them, so he'd have some idea about where all the beeps were coming from.

Keep those emails coming! We're going to have to go back and read some of the ones you've sent again to Sheldon now that he's awake, but fresh ones are great for Ben and Viola too, who have moved into the PICU indefinitely.

More smiles

We had another positive report from the doctors this morning. They are very encouraged by the progress Sheldon made over the weekend, especially his “waking up” and responding to stimuli.They conducted another EEG this morning and we are waiting expectantly for the results.

Sheldon’s heart is still very weak. The doctors say that he has a 30% chance that his heart will be able to fully recover from the trauma, 30% chance that he will recover but have minor heart troubles as a side effect, and 30% chance that he will end up with serious heart complications. Apparently doctors are less concerned about mathematical accuracy than engineers...

Mom reports that Sheldon seems much more at peace. Please continue praying.

Watching and Waiting

I just wanted to add a few more things. Please check Crystal's post just below this one for an update on Sheldon's condition.

There have been over 120 emails to Sheldon sent by you folks (not counting offers of food or assistance) in the last 4 days or so, and this site has had well over 1100 visits in that time. There have been so many loving, encouraging, hopeful notes from all over the world. There are dozens of churches and individuals in Winnipeg who have committed to pray, and many more people from all over Canada, the US, and (strangely) Africa has a pretty big contingent too. Crystal and I tried to count, and couldn't. There are strangers who have happened across the website and then sent emails committing to pray. Thank you.

To me, it seems like the whole world is waiting on God on behalf of this boy. I have never really understood how prayer actually works, and I don't know if I ever will or even if I'm really supposed to understand. We know that God is good, and loves us, and that He wouldn't be God if he didn't have the ultimate power over this situation. We also know that we are not wiser than God. We're watching and waiting.

Sunday Evening Update

After struggling for breath most of the afternoon, Sheldon was put back on the respirator early this evening. The doctors decided that he is not strong enough yet and are going to give him a few days to rest before trying again. It was a difficult day for Sheldon and this strain naturally transfers to mom and dad and the rest of the family. Although we are disappointed at this setback, it is a relief to know that he is able to rest comfortably again and we hope that this period of rest will allow him to regain strength.

- Crystal

Sunday Afternoon Update

It has been a busy day. Sheldon was taken off the respirator to see whether he could breathe on his own. While he is able to do so, he is struggling and may have to go back on. He is definitely responding to requests to move limbs etc (even when the doctors are watching), but is now under intense scrutiny by the medical team again. This means that the family has to leave the room for a while, which causes worry levels to rise quickly.

Crystal reports again that Sheldon appears really scared (I haven't been there today - stayed home watching the little one). Please continue to pray for Sheldon, as he is still in very serious condition. I will try to post again today once we hear more.

Sheldon wants hot chocolate!

I just talked with mom and Sheldon seems to be waking up even more. He is responding to commands like move your foot, squeeze my hand etc. and is answering questions by nodding or shaking his head. Dad asked if he wanted some hot chocolate and he said yes (he might have to wait awhile for that, unfortunately). I can't wait to go see him today! I'm pretty sure he will nod when I ask if I am his favorite sister...

Some specific prayer requests for today:

1) Sheldon is saying that he is very scared - please pray that he will be comforted and that even when he has to be alone for short periods (during shift change) that he will feel God's powerful presence and know that we are all rooting for him nearby.

2) Continue to pray for mom and dad - They are eating better and getting more rest, but knowing that their son is afraid causes them to worry even more.

3) The doctors have tried twice to allow Sheldon to breath on his own and so far he has been unable to do this. They are planning to try again this afternoon. Please pray for wisdom as the medical staff evaluate Sheldon's readiness for removing medications and life support. And pray that Sheldon's body will continue to heal and get stronger.

Thanks again for your prayers.

- Crystal

EYES WIDE OPEN

Julie and I have just come back from picu and we are very happy with todays results.
he recognized Julie with confirmation by the squeeze of my hand. the joy we feel to see him open his eyes wide and try to say something makes us just want to grab him hug him and never let go. I explained to him that he is there to get better and to not be sad. I explained the blog, his emails and all the tremendous support from all over the world for him and he truly looked pleased. he does recognize voices, faces and is able to move his legs and arms! the nurse had picked up his right arm and he was not happy. he instantly woke up and lifted his left arm to hold his right one down. With all this great news, we must remember he is still in very critical condition with full life support. the respiratory specialist came by to see how he could do breathing on his own and he was still unable to keep up without assistance.
We are amazed at the care and compasion of all the staff on picu and thank God for them.
We were told we needed a miracle just to get this guy out of his comma and look at where he is now. Thank you everyone for your support and especially all the prayers and emails!
Keep fightin brother,
Lonnie and Julie

Sickbay Log

Stardate 260108.5. Crew morale is high. The sheldon lifeform has opened its eyes and apparently responded to external stimulus such as voices and faces. The sheldon turned towards a voice with eyes open, and hand-like appendages squeezed upon demand.

To Viola's annoyance, the good doctor has refrained from celebrating, citing reasons such as "too early to tell." The andrew lifeform hopes he isn't getting himself into trouble with Star Trek references. Transporter standing by...

The downs and the ups

We just got back from the hospital, where the mood has risen again. Sheldon has opened his eyes and his eyes were flicking around a bit. There was a wise, very experienced ICU nurse helping out there who gave us her impressions of what this means.

She told us that usually they look for a more direct response, such as opening his eyes when told, or squeezing a hand in response to a question. She also said that it is important to keep hoping, and that only time would tell. She had seen many things in her 12 years on the Pediatric ICU, but she told us the most difficult thing is the ups and the downs the families go through while waiting. Very kind lady.

Might I point out that the PICU staff at the HSC in Winnipeg are fantastic. The nurses are very gentle, patient, eager to explain things, and highly competent. We are very lucky to live in Manitoba where this incredibly high level of medical care is available with no extra cost to us.

______________________________________________________
One more thing... at 7:30 every evening there is a shift change at the hospital, and no visitors are allowed in the room with Sheldon. This has become something of a family gathering and prayer time, and Viola (Sheldon's mother) specifically requested (strongly seconded by the rest of the family) that I ask you, Sheldon's adoring public, to pray for him at this time as well. Sheldon thanks you.

Okay, one quick anecdote... Crystal and I were walking down the hall on our way to the ICU to have a quick visit this evening, when Ben and Viola passed us in the hall on their way to get some things from their room before the doors were closed. Crystal had in her hand her sheaf of emails (only 5 new typed pages because I messed up and didn't print the other 5) from all of you guys. Viola literally reached out and grabbed them from Crystal so she could read a few on the way up to her room and back. She couldn't wait until she joined us in the waiting room. They're so much appreciated! I'm trying to decide if this is the same as internet addiction for Viola, but I figure I'll wait until things calm down before approaching her about it...

Difficulties

I am at serious risk of getting technical things wrong here, just so you know. My track record hasn't been great so far...

Today, the doctors had been hoping to see some signs of improvement in the MRI results, and instead they came back unchanged. There is less certainty that the current diagnosis is correct (encephalitis), since the current course of treatment has not altered Sheldon's condition.

There is a possibility that Sheldon's condition is actually vasculitis, which is an inflammation of the blood vessel walls, in this case the vessels surrounding his brain. The treatment for this is different than for encephalitis and could in fact aggravate a viral infection, so in order to be sure about the treatment, the doctors have proposed a brain biopsy, which carries it's own risks. This procedure could not be performed until Monday, and requires permission from the family.

Additionally, the EEG (electroencephalogram, a test which measures the electrical signals in the brain - you can see where the word comes from) has come back with spaces between activity of up to 6 or 8 seconds. While periods without activity can be caused by drugs, the neurologist was unhappy about the long duration of the inactive periods. They will reduce the medication he is on somewhat to see what effect this has on his EEG scans, but even this is not a conclusive test.

To summarize...

Sheldon's condition is worrying to the doctors. This worry of course transmits directly to his parents and family, and they are very discouraged. They may have some very difficult decisions to make in the days ahead, and they have asked for prayer that they would be wise.

The uncertainty surrounding this situation could be the worst part of it. How long will this last? What will the outcome be? What action to take? How to live from day to day with this trouble?

Sheldon's busy morning...

I just spoke to Julie, the MRI is unchanged from the last one. The good news is that it is not getting worse.

The doctors & nurses are currently working on getting Sheldon more comfortable, as it was a very stressful morning for Sheldon with a lot of changes.

The Restaurant at the End of the Universe

First of all, thanks so much to all of you for your support and emails. Special thanks to the Riverwood youth leadership, you guys are awesome - a great example of what church community means! Also thanks to all the family who has visited and helped out, and the countless examples of friends and churches showing their love. I can't name names, because there are so many... over 50 emails (18 typed pages) in less than two days, close to 300 website hits in less than a day, many phone calls, and on and on. There's no doubt that this boy is loved, and no doubt that God is hearing about it. Keep praying, and we will keep passing on your notes to Sheldon and his family.

I will leave the medical updates to others; as far as I know he is much the same. I did want to mention a few details about visiting and how folks can help. We've had several offers from people to bring meals to the family. This is actually very helpful, as hospital cafeteria food can only taste good for so long, and also starts to get expensive.

Here are a few tips for all you generous gourmets: please send an email to the getwellsheldon@hotmail.com address, and Crystal or someone else will get back to you with how you can best help. She may give you a date and a time which is most convenient, or suggest some other way to assist. Keep in mind that Ben and Viola are physically and emotionally drained, and they may not feel up to visiting around suppertime - this doesn't mean they don't appreciate your help! Also, please don't feel like you have to visit or send food. The emails are so encouraging to his parents and the rest of us.

One medical detail I do have... Sheldon will be undergoing an MRI tomorrow at 9:15AM. He needs to be unhooked from his machines for that time, so there's some risk in the procedure. Good news that he's finally stable enough to get an MRI, but a bit scary.

Good News!

For the first time since Saturday we are seeing small improvements in Sheldon's health! This morning mom and dad met with Sheldon's doctors, and although they are not saying that he is out of the woods yet, they see some movement in the right direction (and the doctor smiled as he gave report :) ) . If Sheldon can maintain this state for the next 24 hours, they will begin to pull back on some of his life support and medications to see where he is at and also try to send him for an MRI.

We want to say thanks so much for all of the support and encouragement we have had in the past few days. We believe that God is working here and appreciate all of the prayers.

- Crystal (Sheldon's sister)

Made it through another night...

For those of you who do not know me, I am Sheldon's cousin...I try and talk to someone in his family a couple of time a day...so hopefully my information will be somewhat current...I am not a medical type...so please forgive me if I miss some of the finer medical details.

I spoke with Sheldon's sister, Julie, this morning, and Sheldon made it through another night. Julie & Lonnie spent most of the night with him, and were able to talk to him. There has been no change medically, he made it through another night without crashing.

Ben & Viola were able to go home for the night...the first time since Saturday. Hopefully, they had a good rest (or at least as good as they can have under the circumstances).

I am hoping that today will be a good day.

Announcing Sheldon's Page

Hello everyone.

If you don't know me, my name is Andrew and I am Sheldon's brother-in-law. We have been overwhelmed with interest and requests for updates regarding Sheldon's health, so we decided to start a web page allowing folks to check in for the latest news. Email is a bit cumbersome, since maintaining a list of people who want updates can be tricky. Also, there are currently a few channels for information right now and it would be nice to consolidate into one.

I'm hoping to have several people close to the situation contribute to keeping this blog updated. I'm thinking especially that those who have been putting a lot of updates onto the Thiessen webpage (you know who you are - please contact me) could also put their updates here to benefit the large non-Thiessen world who is interested in Sheldon.

We are also maintaining an email address: getwellsheldon@hotmail.com. Any mail sent to this address will be printed and brought to the hospital to read to Sheldon or encourage his family. These emails have a big impact, so if you can't visit, please send a note. They're much appreciated.

As far as an update goes, Sheldon is much the same as he was yesterday. The exact combination of drugs and support systems has changed a few times during the day, but his condition is relatively stable, still described as "deep coma." His family is very, very tired, and are trying hard to understand God's purpose in all of this difficulty, and what a 13 year old boy has to do with it.