The Official Diagnosis

The biggest question to date has been "what the heck happened?" The answer: antiphospholipid antibodies, an autoimmune disorder/disease.

Alex had an infection that triggered/created (?) these antiphospholipid antibodies in his system. There is no research that has yet uncovered why people have or develop these antibodies, so we do not know if he had them before the infection or if he developed them as a response to the infection. We only know that they caused his body to react in such a way that blood clots were formed, causing the strokes.

They do know that the chance of any of the rest of us having the same antibodies is rare (Jason, Troy or I). The specialist overseeing Alex's case has only seen this syndrome affecting multiple family members once in 20 years.

It is possible that he will cease to test positive for these antibodies any time. If he does then they will be able to cut down on the blood thinners. His next testing for the antibodies will be at the end of October; until then we are giving him injections of blood thinners twice daily using diabetic insulin needles into his thighs. He's getting used the injections but it's still difficult. He is also taking aspirin (orange flavoured chewable) each morning.

So we are hoping that the October test is negative and will result in either little or no more medication.

Amazing

So far Alex's progress has been amazing! When we brought him home from the hospital (the first time) on August 4th he could barely hold his head up from the pillow. We were constantly adjusting him on the couch because he wasn't comfortable and didn't have the strength to adjust himself: "I want to lie down" "I want to sit up" "My bum hurts" "I want to lay on that side" "I want my Elmo chair" "sniffle sniffle" all within about 90 seconds. For those of you that visited you know I'm not far off with this.

The therapists at the Glenrose have explained to us that Alex's movement will come back in stages. His joints closest to his body will regain movement first (shoulder and hip) followed by the other parts (elbow and knee, then wrist and ankle) and the last to be regained will be the fingers and toes, fine motor skills. This doesn't mean that he doesn't move his fingers and toes at all, but we have definitely noticed that the best movement is in his shoulder and hip, elbow and knee so far. The rest gets tired much more quickly.

It's also interesting how he will move his fingers and limbs more when he's not really trying. Like one day I was washing his right hand after a snack and then thought maybe I would wash his left hand too, just to encourage a pattern. Imagine my shock when his fingers splayed open, helping me to wash between them just like they used to! Up until this point his hand had been a little claw that he protected by hitting us with his right hand whenever we tried to straighten his fingers ourselves.

Today at 'school' Alex walked around the furniture and even kicked a balloon with his left leg, voluntarily, while standing! He was being supported around his ribs by the therapist but only for balance purposes, his weight was fully supported by his own legs!

I know that many of you have been praying for Alex and I want to tell you that we are seeing the results!! God has blessed this little boy with joy and laughter so loud that the other therapists are leaving their offices to find out who is laughing. They are even telling him that just hearing it makes them so happy! He has endured repeated tests and procedures and setbacks that I think would make grown people suicidal and he has come out victorious!!! Thank you to all of you for your support to our family and to Alex, may God bless you all for your generosity of spirit and love.

Alex Walks!!!

Alex has been amazing us the past couple of weeks. He has begun to move his left leg and arm and continues to do more everyday. His therapists believed that he would only be able to do about 30 minutes each day but he is wearing them out by still going strong at 60 minutes. Here is what happened tonight...

Alex's Story Part IV

Once Alex began to recover in the hospital the extent of the damage to his motor skills became apparent as he can no longer move his left arm or leg and his left eye cannot look left since the muscles are so damaged from the incredible swelling in behind it. He also had a lot of difficulty holding up his head and sitting up was out of the question. He slept all the time for the first few days.

Once we brought him home he began to show more signs of strength and alertness, including an ever-present whiny-ness that we were quite grateful for, given the situation! At present he has lost the whiny tone to his voice and has come a long way in his recovery already. It hasn't even been an entire month since his stroke and he can sit up, lean forward, lean backward, and order us around like a pro! Of course, we all jump to help him...

Last Tuesday, August 10, instead of being in Vancouver like planned we were at the Glenrose Rehabilitation Hospital for his first session with his occupational therapist and phsyiotherapist. Thankfully Alex seems to have forgotten about Vancouver and really enjoys his time with the Glenrose! His OT is male and I think that it helps Alex to look forward to the visits, he has a 'buddy' there.

The main kind of therapy they are doing right now is just with play. Since all the damage is on the left side the therapists put all the toys on that side to encourage him to look that way, lean that way and hopefully he will also try to use those limbs more out of habit. We have noticed a few flickers and even a few more obvious movements from his leg and arm over the past few days that are very encouraging!

The therapists all agree that he should be walking and running again someday. They also seem to believe that his left hand and arm will be very useful and we should only see a residual of the damage that is now so very evident in Alex.

The one thing that I am the most grateful for is that the Alex that was my son is still my son. He has the same personality, the same sharp wit and the same tenacity that he always had. Just today he managed to pummel us with a series of "why is...." questions that had me laughing all the way home. Well, to be honest I was laughing because he wasn't asking me, he was asking Daddy!

As some of you may have seen in our updates on Facebook we had to take Alex back to the hospital this past week. It turns out that Alex had a couple of kidney stones pass on Wednesday which was the cause of his sudden pain and vomiting. We did get admitted to the hospital but were released yesterday with no further problems.

In order to determine what kind of stones they were the kidney doctors need to obtain 48 hours worth of urine, every single drop! Since Alex is not potty trained anymore they needed to put in a catheter to accomplish this test. They tried to put one in and failed, poor Alex was so anxious because the nurses did not prepare themselves properly and it took way longer than it should have. I may write a blog entirely dedicated to how to intervene for your child.

At any rate, none of us was willing to try to catheterize him again so they sent us home. Our pediatrician is not concerned about what caused the stones and no more were evident in the ultrasound so hopefully those were an anomaly. Meanwhile, we are cutting back on the foods that cause stones and hoping that the drugs he is on don't create any more.

How Can We Help?

It's the question that everyone asks. Or, "Just let us know how we can help." And, how do we answer that question? Well, before this incident, I'd respond with our societal norm, "We're fine."
But now, my response is more often, "I have no idea how you can help. I've never been through this before..."

For the time that we were in the hospital (we've been home for a week, now), Jenn & I were in survival mode. Thankfully, we're not living completely paycheck-to-paycheck, so money wasn't a huge concern for us. Troy's an easy kid to look after, and our whole focus was spending time in the hospital with Alex trying to get some answers, or being at home sleeping.
Lots of family and friends have helped out with emotional support and prayer. A few asked if they could bring by food, which was great... though now we've got food stored in cupboards and on counters where it never was before - talk about overflowing in blessings! A few people have blessed us with money, which was nice. An old college friend and our neighbor mowed our lawn. A few family members have helped clean our house. THere's help to be had, that's for sure.

But, thinking about all of this today really made me realise that we are a culture that doesn't know how to accept help. It's a weird paradox. I know the people I know and are offering help are generous and sincere; but, we live in a culture where we are meant to be independant. "I don't need help, I can do it on my own!" is the battle cry of our society. Yet, when people like us hit times like we have where we really do need help, we have no idea what or how or when to accept it.


Alex is back in the hospital today. Aparently, he was throwing up all day (I was at work for only the 2nd day in over 3 weeks); and, an X-ray at teh Glenrose (where he's doing rehab) showed a possible ulcer and blockages in his bowel. Talking with the few people I have since receiving this news, of course I get the question, "How can I help?"
All I can think of is, "MAKE MY SON WELL!"

I really have no idea how you can help. I am about as independant a person as I know... except my wife! We are two of the most self-reliant people in our lives; so, to know where we need help is almost an imposibility. BUT, WE DO NEED HELP.

Please, if you want to help, pray/think about what you can do to help then offer it to us ("Do you need babysitting/house cleaning/yard work/money/etc..etc). I think that's the best way to go.

And, pray. We've had friends and family tell us that they haven't prayed in a REALLY long time, but they're praying for Alex now. Keep those prayers going. Pound on the doors of heaven with us. I know God is listening, but when/how He answers, I'm not totally sure.

Thank you all for all of your help. IT IS SOOO MUCH APPRECIATED!

Why do I always get the hard nights?

Today marks 3 full nights of sleep in a row for Alex... and me! While staying with Alex in the hospital (Jenn & I alternated nights with him), I always seemed to have the worst nights. I remember our last night in Emergency, when we got moved up to the ICE room, I didn't get to sleep until at least 4am, and was up helping nurses get things figured out again at 8. I can't remember anymore if that was the same night it took 8 tries to get his IV in - I hope some day I totally forget these horible nights, or at least they all mold into one terrible night in memory!

As things start improving, we get moved over to a new area of the ICE unit that allows the parents to sleep in a BED, instead of on a pseudo-comfy recliner. However, that bed is sitting directly under the AC unit that blows constantly! I've slept in a tent with snow on the ground better than in this bed!! And, after only a few hours of trying to sleep, one poor kid just can't sleep and is crying and crying. I ask sympathetically (probably more like pathetically) to the nurse if we can move back to the other side - I'll gladly sleep in the shitty chair instead of trying to have to ignore the other kid. Thankfully, the kid is deemed well enough to have his own room, so he gets shipped out around 2am. They're still monitoring Alex every hour, and I'm such a light sleeper that I wake up almost every time the nurse stops by. Thankfully, the ICE unit has the best looking nurses on the ward! ;)

I think it was my next turn sleeping there when the new neighbor's family stays until around 11pm. I can understand family wanting to be with a little guy, and I think it would have been fine if they had a private room; but, they kept both Alex and I up too long. I am really feeling the toll of so many sleepless nights. Thankfully, the Lord had taken away the Grouchies from me. I say it must have been a Divine work because I really didn't have to work to change my thoughts much. Several days earlier, I was snapping at everyone; but, now I seemed to be more understanding. I only had to ask politely one more time for neighbors to keep it down a bit b/c they're keeping Alex awake... of course, that was the night that Alex woke up and cried for 1/2 an hour, waking everyone else up. I felt like such an Ass... But, the next day we got moved to our own room and he only had to be checked every 4 hours!

Even after being home a few nights, Alex is still on hospital time - waking up every few hours, crying for whatever reason. God, is that ever exhausting! But, now he and I are sleeping through the night. I have no idea how Jenn does it - she's still getting up 2-5 times each night to feed Troy. I'm lucky if I hear Troy cry twice. I'm learning not to say, "What a great night! Troy only needed to be fed once!" WRONG! Jenn, you are a hero!

Again, huge thanks to all of our friends and family who are giving their prayers and support! We truly are a blessed family!

Alex's Story, Part III

There has been so much happening the past few weeks that the details are getting fuzzy, but here goes...

As I've already said, the MRI results trigger some new medications (steroids, blood thinners) that begin to work immediately and well. Jason and I start noticing improvement so fast and Alex's fever stops on Thursday never to return, hallelujah! That marks 12 days straight of fever for Alex that was finally finished.

On Thursday night I had really weird dreams. At one point I was going into a 7-11 and there was nothing on the shelves, but the word 'THROMBOSIS' was plastered on the wall above the shelves. I also kept hearing the word being said out loud throughout the night, like a song you can't get rid of. Jason also kept hearing that word. Thrombosis = blood clot. On Friday they did another CT scan which showed that a piece of the clot had broken off and caused more damage further down the artery. A discussion with the pediatric stroke specialist (it sucks that we need those!) ended with him saying that although it looks worse now, the actual visible effects of the stroke would not be much different since the clot moved along the artery it had already damaged.

At this point Jason and I are reviewing the past couple of weeks and marvelling at the timing of this event. Granted, we would never have chosen this. But considering how much it all sucks, this is the best timing. We were supposed to have gone to Vancouver the beginning of August and although I NEVER buy insurance, something told me I should when I booked the trip in March and I listened. Also, with Troy I am now on mat leave, ensuring that I am still bringing in cash every two weeks. Troy is also really portable still, he doesn't need to crawl or run around and we had started keeping him with us in the hospital in the evenings.

The heparin (blood thinners) are being administered by IV drip and are working but the docs aren't happy with the levels in his blood. Apparently heparin is a very 'sticky' drug that will attach itself to anything and everything: the IV tubing, his skin, blood vessels, incorrect cells, etc. This sucks up the heparin for uses other than intended which means that it is not really able to do its job. On Saturday the thrombosis team decides to 'bolus' the heparin twice, which means they will administer large doses and hope that it gets Alex 'therapeutic' which means that the levels in his blood are where they need to be.

The levels are therapeutic immediately after each bolus but drop off substantially within a couple of hours, meaning that the IV heparin is not working well enough, so we switch to injections. Alex receives two injections daily into his thighs. We are still doing this and won't be switching to the oral medication for at least another 2 months. At least the needles are the diabetic insulin needs, very small. And the dosage is not very big. But because he is on blood thinners and aspirin he bruises quite easily and the poor kid's thighs are constantly purple.

Over the next week we slowly begin removing medications and we also begin moving down the hall, away from the acute care room and the isolation room. We even give Alex an immersed bath at one point. It takes two nurses, mom, dad and a whole lot of equipment but we get it done! The next day we take Alex in a stroller out of the unit for 10 whole minutes! He gets worn out pretty quickly but we manage.

We can see now how relieved the doctors are, not just because they look relieved but because the really highly paid specialists don't come by anymore. Alex is finally getting better, his medications are stable and determined and now all we do is wait. Dr. R. also finally starts talking about 'when' we get out of the hospital. After that conversation it hit me how I hadn't heard that yet, that no one was talking about 'when'.

On Sunday of the long weekend, August 1, 2010, the doctor lets us take Alex home for the day and the night. We still must take him back in the evening to get his PIC line flushed but that only takes 10 minutes. We are so grateful to have him home!

That Sunday night marked the first time that all of us had been in the house together since the whole thing began 15 days earlier. Alex was officially released on Wednesday, August 4th after a flurry of consultations, two more ultrasound tests and much coaching by home IV, etc.

Our son was finally home and ALIVE!

A Father's Perspective

The first week in the hospital was extremely frustrating. Everyone kept saying, "Good thing Alex is at the Stolery!" and all I could think was, "God help any little kid who's not here, cause if this place is the best of the best, they'd be toast!" Every procedure I witnessed was botched at least once. An intern 'tried' the spinal tap: while Alex was crying, the Doctor was telling his lacky to just move it around. Finally, I just looked at the doctor and said, "Get this done!"
Day after day went by with zero answers. The doctors just kept guessing - and treating what they were guessing at! "Maybe it's a virus?" They gave him an IV med for viruses. "Maybe it's TB?" They gave him a bunch of IV meds for TB. "It could be this bacteria or that bacteria?" So they gave him a few different broad-spectrum antibiotics. I witnessed nurse after nurse try to give him an IV line - one night it took 4 nurses and 1 doctor eight tries to get the line in: first a couple nurses from ICU tried, then the nurse who was attending him, then the resident Dr. Finally, one of his nurses from Emergency came up and got it on her first try. It was all I could do not to freak out at the combined ineptitude of this staff!

After this night, I asked everyone who would to pray for me. I was so fed up with the lack of answers from the doctors and the continued mess-ups by the nurses, that I was ready to take Alex home - it couldn't be any worse! It culminated when a resident from ICU came up to ICE, where Alex was staying and tried to bully us into moving him down to her unit - that was the closest I'd been to hitting anyone in a long time.
Thankfully, God began to soften my heart, and get us some help. The nurses in the ICE were fantastic from that day forward. My aunt helped out with some homeopathic remedies, which seemed to help immediately - within hours of the first dose is when we began to notice some improvement. And, once they found the stroke, the doctors finally had something they could work with; and, Dr. R was doing an amazing job at keeping everything coordinated between the Infectious Disease team, Neurologists, Stroke specialists, Thrombosis (clot) specialists, Rheumatology, and different radiologist... I may have left a team or two out - oh yeah, they added a gastro team in there, too.

Thankfully, we've had lots of support through all of this. Our family is FANTASTIC! And, all of they prayers from the people at HoPE and C3 Edmonton have really lifted our spirits and given us strength. I am fully convinced that it was these prayers that kept Alex going during the worst of it all. And, their prayers continue to help. Without all of this great support, I don't know where we'd be. Even in this horrible time, we feel truly blessed!

Alex's Story, Part II

None of the specialists provide us with any answers, just more medications. Everyone is waiting for the cultures to come back and provide some answers but nothing is growing in those cultures. Seems that the original antibiotic prescribed at the beginning of the week did not kill the bugs but are active enough in Alex's blood that they are preventing the bugs from growing in a culture for identification.

By Sunday afternoon the pediatrician Dr. R. agrees with me that he needs to sleep better and finally prescribes some morphine for Alex, which goes over really well, he can finally sleep...if it weren't for the nurses having to check him every couple hours for temperature, give him more meds, etc etc.

Monday goes by with not much else happening. Alex still has a fever, his eyes are still swollen shut and he is retaining water everywhere. One nurse who had not seen Alex before commented on how we are lucky that he is such a stocky kid, it should help is recovery. As you all know the word 'stocky' has never been a word to describe Alex! That is how much water he was retaining. So another drug to counteract the water retention is added to the mix and begins to work quite quickly.

Monday night/Tuesday morning prove to be the most challenging to date and Jason is overnight with Alex. Up until this point Alex has had 4 different IV sites which failed due to him pulling them out (this stopped once they gave him morphine) and his veins collapsing. The last IV fails around midnight and it takes 4 hours, 8 tries and a few different nurses to finally get another one started on his foot. When I take over for Jason in the morning he is completely exhausted and my son looks like an overstuffed pincushion.

Within a few hours this new IV fails as well. His nurse suggests that maybe it's time for a PIC line, a line that is only used for longterm IV patients as it is surgically inserted and can last for up to 3 months at a time. The line goes both ways: he can receive medication through it as well as have all his blood draws taken from it. This would remove the need for the IV and the regular blood draw pokes he is getting in his other arm. I agree to have this inserted immediately and Jason's only comment is "why didn't they do this sooner??"

Alex is also scheduled to have an MRI completed on Tuesday afternoon. Both the PIC line insertion and MRI require Alex to be knocked out. The anesthesiologist and Dr. R. both go to bat for us and arrange for both procedures to be done at the same time rather than separately which is what the PIC line department wanted us to do.

When Jason comes back that afternoon the MRI and PIC line have both been finished with success and Alex is recovering in his room. Troy is being watched by someone (sorry I can't remember who) so we are able to meet with the large team of doctors that evening together.

It turns out the MRI, which wasn't expected to reveal anything, revealed blood clots in two of Alex's four arteries leading into his brain. All the doctors are shocked. There was already some small damage in the mid right brain that control motor function and executive decision making. The doctors all recommend that he be started on steroids to reduce swelling and blood thinners immediately. Everything is explained to us but we are so tired of delays that we don't even care anymore, just start the drugs now and tell us about what you are doing later!

These drugs finally provide the turning point in Alex's recovery. He finally starts to show some reduced swelling in his eye due to the steroids and his fever disappears sometime in the following days.

More to come.

Alex's Story, Part I

There are many of you that do not know the whole story and some who would like to follow along. Rather than use email and Facebook I thought this would be the best venue to share Alex’s updates and information about what happened.
On Sunday, July 11th we were at a kids birthday party and Alex was feeling so poorly that he asked to go home early. That evening he developed a fever which I treated with Tylenol and he slept. The next day he also began complaining of a sore throat. Since Jason had been treated for Strep throat less than a month before I took him to the local med clinic (it’s a new clinic, so no waiting in line – yay!) where the doctor took one look at his throat and prescribed antibiotics. He also mentioned that there was the beginning of an ear infection on the right side. The doctor did NOT take a throat swab. Note to all of you: always get a throat swab BEFORE taking antibiotics. We may have been able to avoid some of this if that had been done.

By Tuesday afternoon there was no improvement but a quick phone call to the doctor’s office told me that most antibiotics take 24 – 48 hours to begin working so I should wait a bit. I also phoned the Healthlink line that evening and was told the same thing.

Wedesday July 14th still no improvement. I phoned the pediatrician’s office at this point and they told me it can take 72 hours, so still to wait. I was getting a little frustrated but what can I do when the pediatrician’s receptionist/nurse tells me that the doctor would not do anything even if I brought him in? That evening Alex started to complain of neck pain but it wasn’t unreasonable considering the amount of time he was spending sleeping, sometimes at odd angles on top of his stuffies.

Thursday July 15th: no improvement. By this point he had been on antibiotics for three full days of treatment. I phoned the pediatrician’s office again and this time was asked to come in immediately. The doctor looked him over, checked his ears and listened to his chest. He also examined his neck. Diagnosis: stiff neck due to muscle strain, begin using Advil for children along with Tylenol to combat both the fever and inflammation in the neck. Call the next day if no improvement.

Thursday evening Alex’s stomach was starting to bother him. Four days of nothing but Advil, Tylenol, antibiotics and milk were taking their toll. I had to give him Pepto bismol a few times to calm him down enough to sleep. Even then he would only sleep about 20-30 minutes at a time. Jason and I were starting to be worn out as well as Alex. And how can a kid sleep when he is in pain? And how can he get better without sleeping? Frustration increased…

Friday July 17th: We are all exhausted and ready to be done. I take Alex back to the pediatrician who tells me to take him to the Stollery emergency. So the four of us go in and get Alex checked out by the doctors there. After blood samples and tests are run the doctor there tells us that he believes Alex has a virus, a really nasty virus that will go away on its own given time. We ask for some better pain medication since there is no way he can fight this thing without sleep and he hasn’t been sleeping. The doctor obliges us with a prescription for something a little stronger than Advil and sends us home.

Friday night Alex doesn’t sleep more than 20 minutes at a time and Jason has had enough. At 6:30 am he takes Alex back to the emergency at the Stollery and they immediately issue a whole bunch more tests that they did not want to put Alex through the day before: more bloodwork, IV setup, spinal tap, etc. Troy and I join them a little later in the morning and I am able to accompany Alex for an ultrasound of his stomach as well as a head CT scan. It’s amazing what they can do when they begin to be concerned for someone.

On the way to the ultrasound Alex sits up on the bed and looks straight at me. Or at least his left eye does. He looks like a deer in headlights but his left eye stares right at me while the right looks around wildly, it is one of the scariest things that I have ever seen. The nurses accompanying us don’t seem too concerned yet but his eyes get checked out regularly from this point on. They figure that there is inflammation in his head due to the ear infections, etc. that has put pressure on his eye from behind.

The head CT shows a double ear infection that has inflamed so badly that the porous bones behind the ears are filled with fluid/pus. The spinal tap is inspected and has some inflammation evident. No one is saying the word ‘meningitis’ yet but it seems to be going that way. Apparently meningitis includes vomiting, diarrhea, SOMETHING more than the symptoms that Alex has which are just fever, neck stiffness and headache, as well as a sore stomach now that he’s been on meds for so long.

The doctors decide to start a rigourous course of IV antibiotics and even antivirals while they wait for the results of the cultures that they started on Friday. No one wants to wait to find out what it is so they treat for everything. He is on 7 different IV drugs plus Tylenol for pain. We have asked for something stronger since Alex is still not sleeping and in lots of pain so we ask for something to help him sleep. They refuse to give him anything stronger since they need to be able to monitor his progress and responsiveness, something they cannot do if he’s out of it.

Since they do not know what has infected him Alex is on a contact quarantine. People who are in contact with him must wear yellow gowns, gloves and sometimes masks. This continues throughout the next week on and off depending on what suspicion the doctors have as to what he is contaminated with (it’s bacteria, it’s a virus, it’s a genetic reaction to something…blah blah blah).

Saturday afternoon we meet Dr. R. who is to be Alex’s doctor for most of his stay at the Stollery. We come to really appreciate his efforts and attention to Alex over the course of the next nearly 2 weeks until he is gone. Seems that local pediatricians take turns working long periods of time (Dr. R. was here for two weeks straight every day) in order to ensure continuity of care. Dr. R. listens and takes every complaint Alex makes very seriously, ordering extra tests and specialists to investigate any possibilities that may explain his pain. Within the first two days a radiologist, hematologist, cardiologist and rheumatologist have been consulted.

Part II coming soon...