Tuesday, August 31, 2010

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.

Friday, August 27, 2010

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.

Thursday, August 26, 2010

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...

Sunday, August 15, 2010

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.

Thursday, August 12, 2010

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!

Tuesday, August 10, 2010

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!

Monday, August 9, 2010

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!