Friday, February 15, 2008

a word from sheldon himself!

Hi everyone, sheldon here. I just wanted to tell you how much I appreciated the emails and prayers you sent. I was really sick and don't remember much of my stay at the hospital. It was nice having visits, now that Iam feeling better I would like more visits. I would like to thank all the doctors and the nurses for the care that they gave me to get better. On the top of my list I would like to thank God for staying at my side. But most of all I would like to thank my mom and dad because they didn't leave my side. I could feel their love the whole time. Thank you everyone!!

p.s. I kicked my brothers butt on the video game Flatout

p.p.s why do seagulls live by the sea?

because if they lived by the bay, they would be called bagels

Sheldon Swampy

Sunday, February 10, 2008

Keepin' On

As you've likely noticed, the update schedule has fallen off substantially. Sheldon continues to slowly improve, but progress towards gaining strength is slow. He still has periods where he sees double, and will be seeing an ophthalmologist on Tuesday for this reason. Tests are still trickling in, and we're hoping we'll know more about what caused this problem in the coming week or two.

Main complaint from Sheldon: he's very itchy from all the places he's been stuck with needles and probes. Main complaint from his brothers-in-law: he's lost none of his ability to handily defeat them at video game racing.


...and a few jokes for the faithful people still checking this blog:

Q: If a turtle doesn't have a shell, is it naked or homeless ?

Q: What's pink and fluffy
A: Pink fluff


Ok, I'm done.

Thursday, February 7, 2008

Update and Reflection

Don't forget to check out B&V's message below this post. Nothing new to report, but to say that Sheldon is doing okay this evening at home. Everyone had a good sleep last night, and is greatly relieved to be back.

Regarding this blog, I think we'll keep it up for a little while yet, until things stabilize a bit. Updates will probably get less frequent however, which is actually a good thing. Unbelievable stats on this webpage, by the way. Over 4000 unique visits to this page in about 2 weeks. I'm thinking I should start selling banner advertising. (To, um, raise money for Sheldon of course...) I suspect some of those visits may be repeats, though.

A while back, I wrote that we were "watching and waiting" to see what God would do. I have just a few thoughts about prayer - feel free to tune out, as the Sheldon update is done, and I'm feeling the pull of the soapbox.

Prayer is not ever a guaranteed miracle, and it doesn't take much praying to figure that out. We need to pray, because as children we need to talk to the One who has control and loves us. We need to let him know what we want, what we're happy about, what upsets us, and so on. This is totally appropriate, of course. For example, my baby daughter comes to me when she wants a cup of milk, and often I give it to her. But really she has no idea why sometimes I don't (for example, it's been sitting out all night). She asks, though. In this case, there were literally hundreds of people praying for Sheldon, and we're so thankful that God seems to have given us what we asked for. Did all those people praying make a difference? It seems so. But why did it happen to begin with? What about the other kids in PICU who have people praying? The bottom line is, I don't know. God is good, loves us, and knows more than we do.

That said, I do know: Hundreds of people were talking to God when maybe they wouldn't have otherwise. Our family pulled together in a totally unique way, and not just the immediate family. A lot of reflection was done on what is important. Churches had a chance to really demonstrate love. Strangers had a chance to show compassion. We gained a new empathy for families with children in ICU. We feel fortunate in a new way to have Sheldon with us. And who knows what else went on or will happen; we're still watching.

Message from the Harders

It is impossible to express our gratitude to those of you who visited us in the hospital and the many more who provided support, encouragement, offers of help, incredible food, and most importantly prayer!!

Miracle is a word we are hearing a lot these days. Early on in this journey we were told we would need a miracle for Sheldon to survive. Then we were told we would need a miracle for Sheldon to survive without suffering extensive brain damage. Well, we brought Sheldon home yesterday... he is very weak and tired but the same friendly, caring and smart boy he has always been!! We believe God used the wonderful staff in the PICU, surrounded by your many prayers and good wishes, to perform a miracle for Sheldon.

At a very dark time, when we felt no hope, God spoke to us and said “It is YES, unless and until I say no. LIVE IN MY YES." We both felt a tremendous peace come over us. After that we would say "right now, today, Sheldon is still with us, we will celebrate that." The very next day was the first time there was a slight improvement in his condition. You all know the rest of the story! We expect there will be more bumps along the path, but we continue to trust God as he works His will in Sheldon’s and our lives.

Sheldon is enjoying all the emails! He just can't believe they are all for him. He would love to have a visit, if you'd like to come. We expect he will be ready for visitors early next week, but please call ahead.

Thank-you so very much for everything!!
Love, Ben and Viola

Wednesday, February 6, 2008

FAQ: Some Details, or Lack Thereof

Here are a few details for all of the patient, faithful swampfans around the world. We would love to have better answers to many of these questions, but this really is all we know.


Q: Is Sheldon still the same boy we knew?

A: So far, we as a family can't pick out any differences in Sheldon's behaviour, except that he may be a little calmer, for lack of better description. This is truly good news, and so far a great relief. He still loves video games, his family (especially his baby niece), and candy.


Q: What about his memory? short/long term?

A: Short term seems fine, long term seems fine. Really, it remains to be seen.


Q: What about other organs? How are his heart, lungs functioning and at what capacity?

A: This remains to be seen, but they're all working on their own.


Q: Will he require physical therapy for his limbs? How are they working out for Sheldon?

A: Sheldon has taken a few steps at a time, but is very, very weak. We don't know yet about Physio.


Q: Does he require any meds?

A: He's not currently on any medication except his usual asthma stuff. (I think)


Q: How is his breathing?

A: His throat is sore, and his voice is a whisper, but less swollen. He has a bit of a raspy cough.


Q: Can he return to a regular diet?

A: He's been eating ordinary food, but his stomach is a little testy.


Q: What is his long/short term prognosis?

A: We have no idea, since we haven't got a diagnosis. This is in God's hands.


Q: When will he be able to return to a normal lifestyle? When can he return to school?

A: We don't know when he'll get back to school or a normal lifestyle, but my suspicion is that patience will be in order for him and his family.

The Downs and the Ups

So Sheldon and his parents have been sent home by the emergency staff. They checked his brain pressure and it was normal, presumably ruling out seizures. He will get another CT scan soon, but for now, he's at home with his exhausted, worried parents. Stay tuned...

Please pray fervently

Sheldon is heading back to Children's Hospital emergency. He started having double vision this evening and medical staff advised mom and dad to bring him back immediately. Please pray that the doctors will have wisdom as they evaluate Sheldon.

Also, mom and dad are beyond exhaustion and are having a very difficult time coping with this setback. They will need a dose of supernatural power to sustain them through what looks to be yet another sleepless night at the hospital.

-Crystal

Movin' Out

Wednesday February 6, 2008 2:40 pm:
Ben, Viola and Sheldon are racing down Logan Avenue toward Main Street in a Ford pickup truck.

Wednesday February 6, 2008 2:43 pm:
I get a phone call. I almost hang up as I hear "Yippee! Woo Hoo!" in the receiver and think I have won another free trip to Barbados... Mom passes the cell phone to Sheldon who says "I love you. I'm going home!"

-Crystal

Tuesday, February 5, 2008

Tuesday Evening Post

We're almost there. Unfortunately, Sheldon is spending at least one more night in the hospital. The doctors want to check to make sure he is completely capable of being sent home, testing all his motor skills on the left and right sides, and just monitoring him a little longer. The reality is that there will be some pretty major lifestyle adjustments in the Harder house for the next little while. Ben and Viola are under strict orders to pay very close attention to Sheldon, and he's lost a lot of time from school. Of course, he's still very weak as well.

Viola told me this evening that she and Ben had each slept about 8 hours in total the first week Sheldon was in the hospital, and not more than 6 hours in any night since then. You can only maintain that so long, and now that the immediate crisis seems to be over, the whole situation can suddenly feel overwhelming.

We'll keep this blog going until Sheldon is out of the hospital, at least. It's purpose is nearly done, Lord willing.

Monday, February 4, 2008

Julie and i went to go to see sheldon tonight, we decided to all go to the cafeteria for supper and sheldon ate a cheeseburger!
He is doing great and looks awesome. like crystal said, he can walk but requires a bit of help.
hopefully he may be coming home tomorrow!

Attention all visitors

I am so pleased and excited to finally be writing this message! Rumour has it that Sheldon is going to be discharged from the hospital very soon. He has a whole pile of doctors and physiotherapists visiting him tomorrow morning to give him a final exam. If he passes the test, he might get to go home as early as tomorrow afternoon.

So, to all of you who have asked about visiting, here is the scoop. You are welcome to visit Sheldon at home once he is released from hospital. But, mom and dad have a few requests...

First, they would like a few days to get Sheldon settled at home before having visitors. Despite Sheldon’s surprisingly rapid recovery (given the severity of his illness, doctors are amazed at his progress), he still gets tired very quickly and is quite weak. Mom and dad also need time to catch up on sleep (Daughter's orders).

Second, please call before coming. We know that many people would love to see Sheldon, but if you all come at the same time it will be overwhelming for Sheldon (and everyone else, no doubt). If you need a phone number, please send an email to getwellsheldon@hotmail.com and I will pass along the information.

Third, Sheldon’s health is still very fragile and we need to guard against him coming down with any other illness. It is very important that Sheldon not be exposed to cold or flu germs (Doctor's orders). So, if you are sick, please wait until you get better to visit.

I’ll let you know what happens tomorrow!

-Crystal

Movin' up!

Sheldon is out of the ICU! He moved up to CH5 this afternoon and is doing well. All IV lines, tubes, machines etc. have been removed and Sheldon is walking around (with help). He was treated to his first real meal in over 2 weeks this morning at breakfast.

Things are looking great and we are looking forward to having Sheldon out of the hospital and back at home soon.

Sunday, February 3, 2008

SAY WHAT??????

Hey everyone, the docs had said that it would be 24 hours at least before he would talk. so Julie and i went to go hang with the little guy all day today while he was sleeping. we took a break and went to have a drink and a washroom break only to find the little guy wide awake when he blew me away when he said "hey Lonnie!!" (first words crystal) we watched our favorite movie cars and he just would not stop talking! About his favorite parts, what cars he liked most, and least. Sheldon did pass a milestone in his illness in the fact that now he is ok with the fact that he is in the hospital with no more tube so he can see he is doing better. So i guess that made him comfortable enough to finally ask Julie what happened to him as he remembers being at our house and then that is it. So Julie told him how he suddenly gotten very ill and he had to go to the hospital. He then asked if anyone was with him and julie told him how she never left his side.
He seemed to be relieved to hear that.

Lonnie

CELEBRATION

We are very excited to say that we just received news that Sheldon is successfully off the ventilator! He is breathing on his own!!! His throat is very sore and he has to cough alot to get out the secretions. He won't be able to talk for at least 24 hours. He still needs iv fluids and nutrition for the next 24 hours and then may be able to start with some oral fluids.

Rough night

Sheldon had a bit of a rough night. He is not tolerating the "food" they are giving him very well and had trouble keeping his meals down. While he was sleeping he managed to pull the feeding tube out of his nose. This earned him a double dose of razipan, and he has been sleeping soundly ever since. The nurses hooked him up to IV nutrients for now to prevent further vomiting episodes.

This morning the doctors found a small amount of leakage around the oxygen tube in Sheldon's throat. This is actually good news, and means that some swelling has gone down in his throat and that Sheldon is getting some air past the tube. There will be a re-assessment at 10:30 this morning and if everything looks good, they will try to remove tube. This is quite scary for Sheldon and the family since it has not gone well in the past.

-Crystal

Saturday, February 2, 2008

Lazy Saturday

Not much happened today... Sheldon is still on the mend, it seems. He is gradually regaining strength, but is still very tired. He slept most of the afternoon.

The medical team has decided to assess Sheldon's airway tomorrow rather than on Monday. Please pray that they will have wisdom as they decide what needs to be done, that Sheldon will have courage (this has been traumatic for him in the past), and that the swelling will have come down enough for the respirator to be removed permanently. Sheldon is looking forward to talking again.

Friday, February 1, 2008

Value Added

Tonight, we have an update, a joke, and a thought.

First, the update:

Sheldon seems to be continuing on his path to recovery. There is still no formal diagnosis, and the doctor told Ben today that they still don't really understand what's wrong, or why he's getting better. Ben told the doctor, "Miracle". We're praying for continued improvement, but also protection against the unknown. I feel really bad for Sheldon, because an ICU is not the most dignified place to spend your time, and he's a 13 year old kid. Now that he's awake, it's tough on him. He's poked at all day long by strangers, he's uncomfortable, and he can't really communicate, forcing conversation to be mainly one-sided. If you know Sheldon, you know he'd prefer to talk once in a while...

I know we say thanks a lot on this blog, but to all of you who have sent food, thanks so much. You are amazing cooks, loving Christians, and (I'm sure) peachy dancers.

Second, the joke. Okay, two jokes:

Question: What is the difference between God and an orthopedic surgeon
Answer: God doesn't think he is an orthopedic surgeon.

Doctor: Nurse, how is that little boy doing, the one who swallowed ten quarters?
Nurse: No change yet.

Boy, you give this guy an audience... I'll be here all night!

...and the thought, brought to you by C.S.Lewis.

"The great thing, if one can, is to stop regarding all the unpleasant things as interruptions of one's "own" or "real" life. The truth is of course that what one calls the interruptions are precisely one's real life - the life God is sending one day by day: what one calls one's "real life" is a phantom of one's own imagination."

Apologies to our faithful readers...

I am sorry I did not get a chance to post an update this morning. Fortunately, Sheldon is still on the road to recovery. Apparently he "stood" for a short time today with the support of a few nurses surrounding him (Julie says it was more like a "prop"). At any rate, his feet touched the floor. He also spent some time sitting upright and watched a movie.

Mom and dad were able to go home yesterday evening, with the hope of getting a good night's rest. Unfortunately, they arrived home to a freezing house and a broken furnace. Fortunately, Dad is able to fix ANYTHING (and, incidentally, can carry extremely heavy objects for large distances)and managed to get the thing up and running again. Here's hoping tonight will be warmer!

We are awaiting results of Sheldon's Echocardiographic stress test (something to do with his heart). I'll keep you all posted...

-Crystal

Thursday, January 31, 2008

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

Wednesday, January 30, 2008

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

Tuesday, January 29, 2008

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

Monday, January 28, 2008

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.

Sunday, January 27, 2008

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

Saturday, January 26, 2008

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...

Friday, January 25, 2008

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.

Thursday, January 24, 2008

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.

Wednesday, January 23, 2008

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.