Jul 31, 2010

Some cool updates

Much exciting news to share.  And all happened over the weekend. 

1) Manny's spinal MRI results came back.  Everything is completely NORMAL!  That is amazing news.  Praise God.  There's a small part of me that wished there was "something" that could explain and help point to a diagnosis.  But seriously, NOTHING is much better.  Next step is likely a muscle biopsy.  We've been hesitating on that but we think the time is finally upon us.  I can share more of our reasoning later but the quick version is ... the diagnosis/prognosis he has now is causing him to not get certain treatments.  If it's really the appropriate prognosis, then that's fine.  But if his prognosis is beyond what they said, then certain treatments need to proceed as to not halt quality of life issues. 

2)  The Staph around the gtube site is basically completely gone!  Praise God.  We have done numerous things and God gets the credit for all of it.  And no matter which route He chose to use, we thank Him for the provision.  For example, he is on HIGH doses of 2 internal antibiotics along with an external one.  He was getting daily cleaning of this with some heavy duty germ killers.  We're also doing some "alternative" health things such as silver and other immume builders.  And we have a new friend, Paul, who wanted to administer some oils known in the Bible.  (I applied some to half of the wound and nothing on the other half just to see if it had an effect.)  I can happily report that the site looks amazing!  He started a random rash like thing but is now on benadryl and it seems to be controlling it. 

3)  Manny's TPR (Termination of Parental Rights) is scheduled for Monday, August 2 at 3:15.  The rights to the birthmother have already been terminated.  This is for the birthfather.  We expect it to be a mere formality.  At that point, the attorney will petition the Judge to set an immediate date for his adoption.  And we're praying for this week or next.  Basically, we've been approved in every area, including length of time to wait.  But some Judges read the law one way and some another about how long AFTER the TPR before a child can be adopted.  We're hoping that she reads it the short way OR that she will waive it based on his prognosis.  So thanks for prayers for her heart being softened to let him have a legal family ASAP. 

4)  Manny was on National TV today!  My friend George Thomas loves golf and immediately had a heart for Manny.  There was a celebrity NASCAR golf tournament Thursday to benefit children with brain injuries and illnesses (Like Manny).  So he decided to play on behalf of Manny.  He asked me for a photo and he put it on a golf shirt.  Then he got signatures from the drivers.  And then it caught the attention of the producer of the Speed Channel (NASCAR)  and he photographed the shirt.  George suggests I auction off the shirt.  So if anyone wants to help with that auction, I'm all ears.  (I know many of you have done tons of these and I'm clueless.)  And if any of you know NASCAR fans who might want to have such a shirt, I happen to have one!  Details to come. 

But in the meantime, here's the clip.  Thanks to my wonderful sister in law, Shari for recording and posting this!   http://www.youtube.com/watch?v=HuxU8f-TQp0

Jul 26, 2010

The never ending staph

All weekend we were fighting what looked like the start of the same staph infection that landed us in the hospital earlier this month.  We have the antibiotics, the cleaning agents they told us to use.  We're staying on top of it but not ahead of it.  They're hoping it's not a drug resistant kind. 

Today we had a doctor appointment (we have a standing 1-2 week visit scheduled with our pediatrician for Manny).  As I was getting him dressed this morning, I noticed a strange bump on his spine about the size of a nickel.  It looks like a huge mosquito bite ... large in the center with redness around.  I know the pic is blurry but I can't seem to get a good one.  I'm holding a standard paperclip for measurement.  It's hard, doesn't feel fluid filled. 

And it must hurt as he winces when he is on his back.  Well, unfortunately, there aren't many alternatives for him.  He can't support is head well enough to sit or lay in very many positions.  I've gotten very creative in my positioning and repositioning skills.  And he is tolerating laying on his side much more than ever before (it must give him relief so he's happy to do it for a change). 

Well between these two things, the doc felt we'd have to admit him in the hospital ... again.  She left to call his GI to get a second opinion.  And we prayed.  When she came back, much to our delight, she and the GI had worked out a plan to keep him home.  We're doing heavy duty antibiotics externally and internally.  They gave me a stict set of criteria and to call immediately if he shows any signs.  She is also needing to see him again tomorrow to measure both sites. 

But the good news is ... for now, he's holding his own.  It's not getting any smaller or better, but it's not worse.  Praise God!  He slept a LOT yesterday and is doing the same again today.  Guess it's his body's way of combating this.  Works for me. 

Tomorrow I'll be teaching a class all day.  Dan will be handling kid duty in the morning and Mom in the afternoon.  Dan will then have to take Manny to the Doc in the afternoon (a first for him).  So as you all pray for Manny, don't forget to uplift those who are doing wonderful, generous things to support us.  They deserve blessings too. 

Finally, several people have asked about the adoption fund ... I'm happy to say that as of today ... generous people have contributed just over $1000 towards Manny's adoption fund ($3000 total needed)!  I'm overwhelmed and blown away.  Much of it is from people I've never even met before.  I can tell you though the one that had me in tears is the $9 given by a brother and sister out of their own money!  I bawled my eyes out and immediately asked God to bless their generous hearts.  So thank you for taking one burden off my mind. 

In regards to the adoption, we've petitioned to have the adoption moved up and we'll get the final answer on August 2nd.  If the Judge says yes, we expect to have the finalization the week of August 9th!  Thanks for the prayers for that as well.  It's a big deal to us. 

Jul 21, 2010

The Outfit

 How about something from the "lighter side"? About 2 years ago, Kaley dressed Jericho (our cat) in this outfit and placed a Bible in his paws. I put the caption, "Is our cat in the word of God more than you are?"

Well, today, Manny got the same outfit and a Bible. So today's title is, "Is our Baby in the word of God more than you are?"  
And the creator of all this silliness!

Jul 20, 2010

The Brave

Tonight, the kids and I were watching "The Princess Diaries" and I heard the quote, "The brave do not live forever but the cautious do not live at all."  It resonates with me. 

We were already not living a "cautious" life ... afterall, we had 5 kids.  They are all adopted.  They are of 3 different races.  They all have special needs.  But it was still a very comfortable life. 

And while I don't think adopting Manny is exceptionally "Brave", I'm told that all the time.  Truth is, I felt God laid him on our hearts and let us know he was our son.   We eventually agreed. 

But there's a line in the song, "Mighty to Save" (I especially like the Hillsong version) that strikes me.  It says, "I give my life to follow everything I believe in."  And that's the bottom line.  I either believe God is the Father of the Fatherless or I don't.  I either believe He has called us to do Matthew 25 (feed, clothe, visit, etc. the "least of these") or I don't.  I either believe He is the Healer or I don't.  And if I am not willing to give my life to follow what I SAY I believe in, what good is my life? 

That song was actually playing on the radio one day as we were deciding whether to adopt Manny or not.  The opening line just made me BAWL, "Everyone needs compassion.  A love that's never failing."  Pretty much the bottom line.  Here was this precious little baby sitting in the hospital all alone.  No family.  No parents.  He'd just had a major loss of his mother and just had major surgery.  And he needed compassion and love. 

And we hesitated.  I guess you could say we were cautious.  We counted the cost.  And that included how this would affect the other kids.  At the time we didn't know Manny had a fatal diagnosis ... but we knew his needs were extensive.  One by one, they all said let's do it. 

I still shudder to think about "what if" and how losing Manny would devastate the kids.  I can't even let my mind go there.  But I also know that their lives are forever enriched by having him as a baby brother.  They love him with no hesitation.  They hold no parts of their hearts back.  They love unconditionally.  They celebrate when he says a new word and clap wildly when he does a cool new trick.  They know he should be crawling and walking, but they cheer when he moves a couple of fingers to wave "bye bye" because they know how hard it is for him.  And they were heart broken to hear the news yesterday that he couldn't eat. 

So I guess if I look at this from an outside perspective, that IS the definition of Brave.  To jump all in, hold nothing back, to love with all your heart, to risk being hurt, to let someone into your soul. 

Manny, my precious prince ... you are truly loved.  And you are teaching us all how to be brave and how to truly LIVE. 

Jul 19, 2010

Feeding test results (long)

Mad?  Sad?  Hurt?  Diappointed?  Scared?  All of the above.  (Just being honest here.)  

It's been hours now since the end of the feeding test and I'm just now calm enough to start writing about it.  Why so emotional over a feeding test?  Because it was the first test that's black and white. 

Up until now, there's been a debate.  One point of view is this:  He is doing better.  Afterall, he's gaining new skills (language, strength, physical skills, etc.)  If he's doing better, than either God has healed him or maybe the diagnosis was wrong or both.  The other point of view is this:  While he is gaining some skills, these are skills he should have had all along had he been in a place that worked with him like we do.  And besides, the areas where he's gaining skills are in the areas controlled by the "Grey Matter" and his diagnosis is in the "White Matter." 

Today was a black and white view of if he is gaining skills, losing skill or holding his own. 

At 8 month old, he had a swallow study and the conclusion was "Mild dyphagia" and they put him on NPO status. 

We hoped and prayed that since many of his other muscles are getting seemingly stronger, that perhaps his oral muscles were too.  I hung my hopes on this, that he is either holding his own or gaining strength. 

The Results:  Severe Dysphagia.  And he is even having trouble managing his own secretions (saliva). 

During the study, they put 1 ml on a spoon of water, then formula, then thickened formula.  (Some kids can swallow some consistencies and not others so they tried a variety of thicknesses.)  He would actually nicely swallow the bulk of whatever he was fed.  Maybe 85% of it would immediately go down just like it's supposed to.  His tongue and palate worked nicely.  But there was this small "residual" that hung out at the back of the throat (due to weakened muscles) and when he would take a breath, it would get sucked down into his lungs and not his throat.  EVERY TIME with every consistency. 

And more scary, is that it's completely "silent" ... meaning you can't tell it's happening!  No coughing, sputtering, no indication.  He was sitting smiling, happily opening his mouth widely for MORE!  This is very dangerous since these foreign foods/liquids don't belong in the lungs and could cause a major infection in his lungs ... potentially life threatening. 

After the study was completed, we went to a room to chat about recommendations.  While sitting there, Manny started choking.  He got so choked that he actually lost his breath.  (Never done that before.)  The speech pathologist said he needed an immediate chest xray and left to call my Doctor for a script for it.  By the time she got back, he was sleeping ... and was in mild respiratory distress.  (Nostril flaring, grunting, tongue hanging out, increased respiratory rate.) 

Xray showed none of the barium in his lungs ... which is good news, meaning he cleared it with some of the coughing he was doing.  And the other good news is that it's not pneumonia.  (Just a bad cold ... which for him is dangerous.) 

So those are the facts.  Why am I upset?  It means that he is indeed regressing, losing skills.  It's a black and white test.  4 months ago he could do things he can no longer do ... something that is controlled by the white matter.   It's a reality that he is losing some skills.  And that doesn't sit well with my spirit.  It's devastating.  I cried the whole way home from the test. 

OK ... I know how I'm "supposed" to feel.  It's like Dan said, "We'll just have to fight harder, pray harder."  And while I'm no where near ready to "give up" ... it felt like a huge letdown.  And for my Christian friends, yes I know God can still do a miracle.  Still praying for it.  But this is proof his healing hasn't arrived yet as we had hoped. 

Their conclusions/recommendations:  they of course are going to keep him on NPO status.  They are not recommending doing feeding training.  And they are looking at some alternative solutions for helping him manage his own secretions (lest he get pneumonia a lot more often) which includes electrostimulation. 

Finally, I know most of you don't know how to respond to this.  And that's OK.  There's nothing that can make this all better except God.  We're still in the same place we've been in since his diagnosis... God has to choose whether He is going to let him live in Heaven or on Earth.

And my Mama heart breaks.

Jul 18, 2010

Imagine ... (Prayer request)

Imagine your favorite food.  Can you see it?  Smell it?  Taste it?  ahhhh.

Now imagine never being able to eat it again.  In fact, you're never going to be able to eat ANYTHING ever again.  Nothing.  Nada.  Not even the stuff you kinda don't like.

You can't even have coffee.  Not even a taste.

You can smell it.  You want it.  But the people around you just will not let you have ANYTHING.

Well ... Welcome to Manny's world.

He was 8 months old, going along just fine drinking baby bottles.  Then one day, he was taken to the hospital and strangers decided he needed a tube in the tummy and to be "NPO" (nothing per oral).  Nothing.  Not one taste.

Since then, he has been NPO.

We have a friend whose daughter Abby is thrilled to be NPO.  For whatever reason, eating was traumatic for her.  It has taken a long adjustment to get the right tube and such but it seems Abby has never missed being able to eat by mouth and is now growing.

We have another friend whose daughter I'll call Edith.  Edith is having major aversions to food.  Her feeding team is working with her and the mother to try to help her swallow but for whatever reason, Edith only wants to swallow very bland, soft foods in small quantity (if anything) and her mother still is trying to feed her sausage and pork chops.  Poor baby!

Most kids who have problems with swallowing (dysphagia) actually have an aversion to food.

Not Manny!  He tries to lick or chomp anything that comes remotely near his mouth!  Doctor's stethoscope, gloves, Mama's arm ... anything.  We are careful about eating in front of him too as he looks so longingly at what we are doing.  His pitiful puppy eyes are staring at you.  (And we have NEVER been able to feed him.)  He used to cry when he would see another baby with a baby bottle.

So what's the prayer request?  Tomorrow, Monday at 10 am EST, Manny is having 2 tests.  First is a clinical feeding test.  The speech pathologist, trained in feeding issues, will give him a series of things to eat and drink.  She will continue as long as he can tolerate it.  She will stop if he has any issues.  We are praying he passes this with flying colors.  If he passes this part of the test, he will go to test 2.  This is where the same foods and drinks are laced with barium and he is put in an xray room where they do a video xray of him swallowing.  THIS is the key test.

Why are they doing this?  To see if he can truly swallow.  For a person with "normal" muscles, if something goes down the wrong way and into the lungs, it's called "aspirate" and this person will choke, cough, sputter, get tears in their eyes, etc.  (You know if you've ever had anything go down "the wrong way".)

But tests showed (before we got him) that Manny was doing "silent aspiration".  Which meant food/liquid was going down the wrong way and he was making no indication that it was.  This is a potentially life threatening condition.  They felt it a strong enough possibility that they ordered Nothing Per Oral.

So that brings us to my final concern.  Since he has had no practice in the past 4 months, his skills might be a bit "rusty".  Also, since he's never been given food, he doesn't know how to do that yet.  Swallowing food is a very different skill than swallowing liquid and most babies take a little practice before they master it.  (He's never been given that chance yet.)

Thanks for the prayers and I can't wait to show pictures of him wolfing down a baby bottle and a picture of him with strained peas all over his face.

Jul 15, 2010

Bad news and good news

Bad news:  He's got a cough.  Woke up Monday with one.  Went away.  Another on Tuesday.  Went away with treatments. Wednesday and that night.  Both went away with treatments ... but he coughed through the night off and on.  Today, he's still croupy even with extra treatments. 

As he lays here beside me tonight, he's sleeping but he's still coughing.  He can only have the albuterol/pulmicort every 4 hours and it's only been 2.  He's still saturating nicely and he's not struggling to breathe.  I have a stethoscope and to my untrained ears, it sounds like all the crud is high and nothing low in the lungs.  I'll get up through the night to give breathing treatments through the night every 4 hours. 

Hope and pray it clears.  If not, we'll be at the Doctor tomorrow to see what she hears.  And other than IV fluids, I have EVERYTHING at home that they use for him at the hospital.  (That was their plan.) 

And no, the irony is not lost on me that the cough assist might have arrived just in time to, uh... er ... "assist in his coughing".  (Update on that ... in talking with several moms with similar situations, many use it only when the child is sick, not a a preventative measure.  I think I can live with that.)

Good news:  He has yet another new skill.  You know the game "uh-oh"?  Where a typically 1 year old takes and object and throws it on the ground.  He says, "Uh-oh" and you pick it up.  Then he does it over and over and over?  Well ... he started that today!  Complete with the sound "Uh-oh" and the giggle at the end. 

Of course we have to modify it for him due to muscle weakness.  Usually it's a set of car keys or some other noisy object.  But for him, it was the corner of a piece of crinkly paper.  Nevertheless, he understood the game and played it for a long time with me.  Tooo fun!  

And as I recall, I've played this with many a 1 year old.  So he's right on track!

For the record, the pics are from his first month home.  Just wanted to show how much he's changed in 3 1/2 months!

Jul 14, 2010

Torture Machine

Torture Machine is the affectionate name I call the machine that arrived in my house today.  It's technical name is "Cough assist" and I have mentioned it before on previous blogs. 

Before I start my rant, let me say that I am very grateful to have been given this machine with no insurance headaches.  (It's a very expensive machine.)  And not everyone qualifies for it.  I saw a youtube video about it just the other day.  A 9 year old girl with SMA was talking about how she is still alive but many of her fellow SMA friends who didn't have the machine are now dead.  She thinks it's a life saver.  And perhaps some day we will feel the same about it. 

But for now ... my heart is in my throat. 

Today, I got a call from our Durable Medical Equiment company saying our cough assist had arrived.  I must have sounded like an idiot as I had no clue one had even been ordered for him.  And I'm sure I sounded a little less than grateful.  I should have been jumping up and down with, "Wow!  Yippee!!  We got one!!!"  But instead, I basically said, "Well, if the doctor ordered it, I guess he wants us to have one.  I had no clue it had even been ordered." 

For a refresher ... the idea of this machine is simple.  Pushes air in then pulls air out of the lungs.  The goal is to produce a cough.  This is especially helpful for kids with weakened muscles like Manny has.  (And in case I haven't been clear about this, he has been labeled as "Severely hypotonic" and several doctors have described him as the worst they have seen.) 

So this all sounds great.  Right?  What's the problem? 

4 things.  1)  When this machine is on Manny, he looks like he is going to die.  He has these eyes that beg me to save him.  (And that's when the Respiratory therapists were doing the treatment not me.)  He seriously looks like he is being tortured!

2)  *I* am the one who is supposed to be administering this torture from now on.  It's not for very long ... but several times a day. 

3)  Several of the respiratory therapists mentioned that they felt this machine was actually unsafe.  One went a far as to say she wished someone would push it down the stairs.   One actually "refused" to administer the treatment since he felt the doctor had ordered to high of a pressure setting.  (He said that the level was the same as those used by 120 pound teens and he is a 19 pound baby.) 

4) There's a question of effectiveness.   In ALL the times they did this treatment for him ... he NEVER ONCE produced even the smallest of coughs.  So is this torture worth it?

So as I sit here, just feet from this machine ... I'm really not sure what I'm going to do yet about it.  I'm not one to go against medical advice ... and especially with Manny since he is so complex.  But I also can't imagine myself turning on this machine, walking up to him and starting the torture ... I mean "treatment". 

I'll let you know what I decide.

Jul 13, 2010

A catch-up post

Not sure how it's been over a week since I last posted.  Can that be right?? 
So let's see how well I can summarize. 

The afternoon of the last post, the baby started this new thing.  He was doing the same choking like episodes but instead of falling asleep, he was screaming in pain!  I mean screaming.  It came in waves and then it would end.  Then again and again.  I noticed that the longer it had been since food, the less his pain.  So I started messing with his feed rate.  It got so bad that I basically stopped feeding him. 

I got advice from lots of docs and moms.  We decided on a time line of when to take him in (since it was the holiday weekend, ALL my usual docs were out!).  Then Saturday about 5 pm (26 hours later), he just stopped. 

Looking back, it might have just been a flu like thing but it's so hard to know since he can't tell us and he is very atypical in almost every area. 

July 4th - Church came over to our house for the "traditional" meal.  Nice to have a semi-normal time!

That week, I took the kids again to Busch Gardens.  This time we decided to stay until close - 9pm.  But then there was a bonus show.  So by the time we got home, it was almost 11pm!  My 6 babies were all very tired and slept very well. 

As you notice in the picture, he has discovered his toes!!  We have to prop his hiney up to get it there but he LOVES them!

Jacob turned 12 on July 7.  Can't believe how time flies until you look at a growing child.  Jacob is our oldest.  We got him and his biological sister when he was 19 months old.  They said he was "retarded" (their word, not mine) and possibly deaf.  Turned out, he just needed some love and attention!  I still remember the Helen Keller type moment with him where he realized I was trying to talk to him!!  I still wonder sometimes too what might have happened to him had we gotten him earlier in life. I know it's young, but so much damage had already been done.  He's high functioning autistic (some say Asperger's, depends on the neurologist) ... and I wonder. 

Anyway ... he's now 5'8", 135 pounds and wears a men's size 11 shoe!  On his birthday he decided he wanted to see if he could pick me up.  He could! 

Thursday was his 1 year old check up.  They're still not doing vaccines on him.  Feel the risk is too high (and this is a VERY pro vaccine doctor).  He was 19 pounds 2 ounces and was 28 inches long. 

Friday was a trip to the GI.  After much talk to him, I feel like Manny's issues are GI related since food often triggers them.  But he feels this is not the case.  He said there was this one thing we could do and we'd know right away.  The next time he's in an episode, I can immediately vent him.  (For those not familiar with gube, this is where I take a tube and connect it to his button.  I then take a syringe and pull out the gas/stomach contents.)  If it is an issue with his nissen fundoplication, this will immediately take away all his pain and he'll stop.  Good to know.  But he truly felt these were some type of abnormal seizures too.  (sigh)  And afterwards, it was "Cow Appreciation Day" at Chick-fil-a.  Basically if you dress up like a cow, you get a free combo. Can't pass that up as a family of 8!  Not many pics came out. 

Saturday was another HORRIBLE day with the baby.  We were out and he started on his episodes.  We've never been out before during this and whew!  Dan had Jacob and I had the other kids.  I texted him what was going on and where we were and they came and met us in the parking lot.  He just had episode after episode.  Thinking about what the GI said, I vented him.  And to my shock, not much gas came out, but almost ALL of his formula did!  The reason this is significant?  I put in about 6 ounces and pulled out 5 ounces...  over 2 hours after the feeding had stopped.  That should have been LONG GONE!  Ah-haaa!  I think we discovered the issue.  I've found gastroparesis might explain some of it.  Even the fact that sometimes this happens, sometimes it doesn't ... very unpredictable. 

Sunday - clean, decorate for the party, church, decorate the cake.  Jacob's party. 

Monday - Visit to WIC ... he's on ready to feed infant formula.  They give me enough to last about 15 days and the rest is up to me.  VERY expensive!  The GI wants him switched to Pediasure.  So I take in the form the GI signed with the amounts he wants.  Of course, they won't cover all of this either.  (But it's closer, thankfully.) 

Today - Busch Gardens with friends Bruce and Snooks.  It was great having them with us since there are rides the kids want to do but can't since I can't go with them (who would watch the baby).  So Snooks kindly watched him as we rode various rides.  Thanks guys!! You're awesome. 

OK ... so that's the catch-up post!  I'll try to do better with this blogging thing. 

Finally, I wanted to let you all know about the adoption fund ... the chip in (middle right column).  I know it only reflects $200 ... but several people have sent checks or given me cash.  The actual total is $580 towards the adoption fund.  Thanks!!

Jul 5, 2010

It's amazing what you can put up with

Ever heard of the proverbial frog in a pot? He'll stay in if you heat it up slowly. I find it truly amazing what we can put up with and what becomes the "New Normal". 

Some background:  For weeks now, Manny has started doing more and more of these "episodes".  Basically he looks like he's choking, can't catch his breath, his oxygen levels drop. This happens for give or take an hour and then he passes out.  THIS is what the docs all thought were seizures.  (Mostly because of the way he is after the episode.)

They are terrifying!  Your mind races with - could this be it?  We have no clue what to do during these episodes and no way to help him.  So we just sit there and pray for him.  I rub his face and hold his hand and tell him I love him as calmly as I can.

The on Friday ... it seemed like they changed.  For the next 26 hours, he would do these episodes, but instead of passing out, he SCREAMED!!  About every 15 minutes or so, he would be in such pain.  (He never cries, never screams!) 

I called and talked to tons of people about what to do, what this could be, how to help him.  But the truth is, there is nothing that can be done during the long holiday weekend. 

I noticed food triggered it ... even the smallest amount of anything would set him off. 

But then, all of the sudden ... it ended.  5pm Saturday it was all over.  We know tons of people were praying!  And God was listening. 

All over? 

No.  Now we're back to the original episodes.  And somehow ... they don't seem so terrifying any more comparitively. 

And that bugged me when I realized it just now.  This is the "new normal".

I'm a frog. 

Jul 2, 2010

Home again

Love, LOVE going home after a trip to the hospital.  I dress Manny out of his hospital gown and put him in regular clothes and he starts to look like a real baby.  Then I stick Manny in the stroller and he does this very happy face.  By the time I put him in the car seat, he does a little jig he's so happy to be going home.

This trip was a lot less hectic than usual for a lot of reasons.  We knew it was coming 24 hours ahead so I had time to pack, plan, get the kids squared away (versus the usual of "You're staying" and then the mad scramble).  It was also easier because he isn't truly "sick", it was for a test so they acted differently to us.  Finally (and this is huge), because he was on "Long Term Monitoring" ... they weren't allowed to disturb us in the night!   (Versus the usual endless trail of people every hour or so.)

I also felt more "relaxed" once he had his episode and I knew they were watching and recording.  That we were closer to answers.  And I just had to wait for the diagnosis.

At 8am, the Neurologist came in with the news, "No seizures".  I never thought it was, but many, many specialists had seen his episode and thought it was.  Why does it matter?  They're getting closer together, longer in duration and more intense.  AND, seizures are the "end stage" of Leukodystrophy.

11 times we rang the little bell that he was having an episode and none were seizures.  He also had none in the night.  Nothing!  None!  Nada!  This is very, very good news.

So what IS it?  We need to find out and soon as these episodes are bad enough to cut off his oxygen and he desaturates and he could die during one.  So we need to find out what is causing them.  GI?  Respiratory? Other?

As I drove home, I thought to call the Hospice staff.  The Hospice Doc saw him after the episode yesterday and the Hospice nurse saw him during one a few days ago.  Maybe we can figure out our next steps.  Which specialists to see next?  Tests?  So that will consume our next few weeks I'm guessing.

Later I'll have to blog about the people we ran into while at the hospital ... little "clues" of why we're on this journey.  But for now, Manny just woke up and I'd rather play with him.  Time well spent.

Jul 1, 2010

Back in the hospital

We're back in the hospital ... this time for tests. 

Lately, Manny has been having more and more of these "episodes".  They're coming closer together, lasting longer and are much harder on him/us. 

It's not quite retching, not quite choking.  One nurse called it "retracting".  And every medical professional who has seen it, calls it's a seizure.

Tuesday we had a 20 minute EEG and it seemed to be normal with no seizure activity ... which is GREAT news.  We then went to the Neurologist and he said that 2 genetic tests came back ... he doesn't have Canavan's or Alexander's.  But he doesn't have a clue what Manny DOES have then.  He is not acting the expected way.

For example, kids with advanced Leukodystrophy tend to have big heads ... Manny's is small.  They lose skills ... Manny is gaining them (like he says Mama, Daddy, Hi, Bye-Bye and he couldn't do that a month ago.)  By the time it's spread as far as Manny's supposedly has (per the MRI), they lose cognitive functions and the ability to interact with people ... Manny is extremely engaging still.

So we left the Neuro scratching his head.  (Usually a fingerprint that God is up to something in my experience.) 

But then Tuesday night he had a bad episode.  We were told to take him to the local ER and we did.  They saw it weren't able to EEG him quickly enough.  The ER doc called our Neuro and they agreed these must be seizures based on the way he behaves after.  So they set up the 24 hour video EEG. 

Wednesday, he had 2 episodes.  (They're so scary and you just sit there completely helpless.)  Kaley (age 10) says he looks like, "He is locked inside his own mind."  I think that's a pretty apt description of the situation. 

I sit in the hospital again and for the first time, I'm actually HOPING he has an episode.  Seems strange to wish for.  But if he's going to have them, we need to know what they are.  We need to know if there are possible treatment options. 

But you know how you go to the mechanic and your car stops making the noise?  I'm hoping that doesn't happen today, that it's not a complete waste of time.