December 2017 Update...

I know the blog is LONG overdue for a decent update.

This update will not be the full update that is needed though.  I haven't written up a GOOD update in almost two years now I think.

It's been a rough year.  Well, year and a half.   About 18 months ago we learned that our landlord at the house would not be renewing our lease.  She claimed that she needed the house to live in, but she rented it out again.  It was what it was though.

We couldn't find a place to take all 9 of us (at the time.)  We looked at several places we could have made work for all of us, but as soon as anyone found out how many of us there was, it was no...   We have been on a VA Housing list for awhile.  So we ended up moving from the house to camping out at  my Mom's.  Wasn't the best, but we made it work.

We came up on the housing list and managed to get a place, moved in on September 8th, the day before Bubba turned the big 9.  (He turned 9 on 9-9) ... LOL ...

I love this place.  LOVE IT.  It would be better if it had a bigger dining room and kitchen.  But I absolutely love it.  We all love it.  It's perfect for the six of us.

Cal is talking about moving out and moving in with his fiancee ...   she's back and forth here, which we don't mind.  Love seeing our granddaughters.  And our daughter in law.

Anyway .....

Mini Updates.. 

We'll start with Noah.

Noah is almost 16 years old.  I'm not sure what all I have mentioned lately.  He was diagnosed with Glaucoma now, and Aspergers, ADD & severe Anxiety ...  his kidneys are also getting worse.  I think they are relatively stable, but he's starting to spill more and more protein in his urine. He still spills a lot of blood when he is sick, too.  We keep a pretty good eye on it.

Also, he has pretty much stopped growing.  He's 5 foot even, and I'm happy he even hit that.   For a kid who wasn't supposed to live at ALL...

Big changes this year, he's been homeschooling for awhile ... like, since 4th grade, and he decided this year that he wanted to go the highschool and see what they had to offer.  So we did the next school day ...He's been attending since the day before Halloween and loving it. He's mostly in the Life Skills room when he is learning skills to be independent....

He went from being so tiny and not supposed to live to almost 16 years old!

Now a smallish update on Nathan. 

He is such a silly guy and soooooooooooo smart.  He might be non-verbal (or non-understandable 90% of the time) but he tries REALLY hard.  

He doesn't have any big new diagnoses but his hearing has gotten worse, he still refuses the hearing aids because they are "too loud" ...  he also went through the VPI clinic and his VPI isn't as bad as was thought, but it's definitely there.   He has to get another sleep study done and then we'll revisit if he should do surgery.  He also needs to get into a speech therapy consistently (He gets ST at school but the ST he was in outside of school was 6 weeks of therapy and then it was someone else's turn and you got put on the bottom of the waiting list again....)

Of course both he and Noah have significant muscle issues.  Neither of them can walk very long without getting really tired.  Noah will push through it, but Nathan gets so tired out so quickly it's hard.  And he still isn't really gaining weight... 

I am worried about him getting put on continuous feeds.  But if that's what's needed, that's what we'll do.  He is still just getting feeds in his g-tube at night.  

He also gets sick and loses weight quickly. He got taken off his HGH because they removed the diagnosis of Russell Silver Syndrome, they don't think he has that anymore.  They are absolutely certain that he has some sort of genetic issue, but they just haven't found it yet.  

He's doing really good in school .. this year is remarkably different and I think it's because his best friend Rylee is in his class helping him out again.  He adores her.  He's also on anxiety meds and he's not freaking out in the morning anymore, which is AMAZING. 

The most important thing is that he has been hospital stay free for TWO AND A HALF YEARS!!!  That's unheard of with him!  It's AMAZING!!!!!!! 

From 3lbs 4oz at birth to 10 and a half years old! 

That's about it for now until I can really sit down and write up the notes from their doctor appointments... 

Aspergers & Noah

.

It's Autism Awareness Month - and let me tell you a little something about our lives on the Spectrum. We don't have just one kids on the Spectrum, we have two.

Noah was diagnosed with Aspergers just recently. He's always had it, I started questioning it when he was about three. There would be days where I just *knew* he had some form of Autism. Knew it - deep in my bones. Then the next day, I'd question that feeling. I ended up being on the fence about it for years. Then when I did all the paperwork for Nathan, it was pretty clean Noah was on the spectrum too. So I brought it up - to the Neurologist that sees both the boys, and he had me do some paperwork for him - and it was clear he was also on the Spectrum, more on the Aspergers side. Plus pretty severe anxiety, and ADD.

Noah has times when he's so badly got sensory overload, and it comes on quickly, and sometimes with very little stimuli ... He kinda sits and just covers his ears ... he gets super angry, argumentative, and sometimes it's hard to get him to move to a quieter place where he can calm down. Sometimes it's hard for him to pick up on things, sometimes things have to be explained to him over and over - sometimes in different ways - before it clicks. He also needs a ton of reassurance about some things.

But that's just Noah, it's how his mind works.  We LOVE him just the way he is.  

Autism and Nathan

It's Autism Awareness Month - and let me tell you a little something about our lives with Autism. Nathan is an amazing kid, we wouldn't trade him for the world, because even with the medical issues, and the Autism, and everything else he has going on - he is perfect to us, just the way he is. If we could make life a little easier for Nathan, we probably would, but not in a "I need to cure" him type of way. However, if cures could be found for some of his worrisome medical stuff, that would be AMAZING, but Autism isn't one of those things. We aren't out trying every single thing out there to try and "unlocking" Nathan or Noah (who has Aspergers.) But there are things that we miss. Like Nathan was a typical child (on the Autism front) up until 18 months, and then there was like a switch that got flipped, and I knew he was autistic. I just knew, I had been on the fence for years with Noah, but I just knew it about Nathan. So those moments when we get real eye contact, true smiles, and deep gut laughs, him being super excited about something are moments that we truly TRULY treasure.

At the zoo last Sunday, our last stop was play area. There are these little cup type things, that spin around and around, and Nathan automatically veered to that... and what happened just made my heart sour with happiness, just watching him. These are true smiles on his face, in the pictures. You know, because you can see his dimple!

Nathan came in my room and DB and I were watching TV, so I paused it and Nathan was hiding at the foot of our bed, and he'd jump up and "roar!" us (this is the first time he's done this in a long time) ... and I'd jump and scream like he scared us, and he'd laugh and laugh - and OMG that *real* laughter is the best sound in the world!! It's so rare that we hear it. So he kept doing it and (I nudged Daddy to get in on it) we'd keep jumping and pretending to be scared just to hear that sound.... it was AWESOME... truly ..

Emotional Vomit of a Worried Mom

So since Noah and Nathan's appointment with the Genetics Doc (team) ...  my mind has been reeling a bit.  I got the letters in the mail today - from the appointment.  Ya know, the visit summery, the doctor's notes that he dictated.  So I am just reading through them....

Basically - the diagnosis we've been living under for the past 5 years is being taken away from Nathan.   That of Russell Silver Syndrome.

The biggest reason is - as Nathan is getting older, he is seeing less and less of the RSS features, and the brain malformations, the cleft palate - and maybe some other things, point in a different direction.
But he doesn't know what.

He mentions his "cerebellar vermis hypoplasia" which we know as Dandy Walker Malformation

the "bilateral frontal polymicrogyria" knew about that too

and "2 subcortical cysts" ....  knew about that....

Doc G. points out that he has a "marked 3 year delay" in growth.  He has proportionate small stature, thin musculature, and distinctive external features.  He has very mild clinodactyly, distinctive foot with presence of short second toe (shorter than both the big and middle toes) ...  he has distinctive craniofacies - which has a triangular aspect to it.  He has hypoplastic columella, cleft palate, cleft chin with prominence.

Not sure what  overhang columella is - looked it up and couldn't find any information about it really - just links to disorders ...  so I found out "columella" refers to the area between the nostrils ... and over hanging just means what it sounds like.

The picture below is NOT Nathan, it's an example of what is being talked about.....  

Then I saw stuff like....

"hypoplastic nares"

1. Hypoplasia is a congenital condition, while hyperplasia generally refers to excessive cell growth later in life. (Atrophy, the wasting away of already existing cells, is technically the direct opposite of both hyperplasia and hypertrophy.) Hypoplasia can be present in any tissue or organ.
2. The anterior nares are the external (or "proper") portion of the nostrils (nose). The anterior nares opens into the nasal cavity and allow the inhalation and exhalation of air.

 and "apparent telecanthus" ...

Telecanthus (from the Greek word "tele" (τῆλε) meaning far, and the Latin word canthus, meaning either corner of the eye, where the eyelids meet) refers to increased distance between the medial canthi of the eyes, while the inter-pupillary distance is normal. This is in contrast to hypertelorism, where the inter-pupillary distance is increased.

The distance between the inner corner of the left eye and the inner corner of the right eye, is called intercanthal distance. In most people, the intercanthal distance is equal to the distance between the inner corner and the outer corner of each eye, that is, the width of the eye. The average interpupillary distance is 60–62 millimeters (mm), which corresponds to an intercanthal distance of approximately 30–31 mm.^[1] The situation, where intercanthal distance is intensely bigger than the width of the eye, is called telecanthus (tele= Greek τηλε = far, and Greek ακανθα = thorn). This can be an ethnic index or an indication for hypertelorism or hypotelorism, if it is combined with abnormal relation to the interpupillary distance (A D STEAS).

Traumatic Telecanthus refers to telcanthus resulting from traumatic injury to the nasal-orbital-ethmoid (NOE) complex. The diagnosis of traumatic telecanthus requires a measurement in excess of those normative values. The pathology can be either unilateral or bilateral, with the former more difficult to measure

AND ....  "narrow palpable fissures in the horizontal plane"  I know fissures means cracks....

I'm not sure if that's in reference to his nose or what.....    I'm just.....  ::: sigh :::

And now, instead of RSS, it's "Undiagnosed genetic bio-medical diagnosis to account for Nathan's congenital anomalies and developmental delay." 

And then on the page below, the thing that jumped out at me was "for exclusion of a congenital disorder of glycosylation of both N and O subtypes"

And there was talk of UPD which is Uniparental Disomy - which means that instead of getting DNA info from both parents - for an arm or what not of a chromosome, or some part of the DNA, the information for both sides came from ONE parent.  So instead of getting info from Dad and Mom, it is Mom and Mom or Dad and Dad.

There is a whole list of UPD's  ...  one of which IS Russell Silver Syndrome.


Noah's appointment didn't go the same way.  At least his diagnosis is solid.

There were a couple of things though ....  

Noticed "Pectus Excavatum" and thought - well - what the heck is that?  Makes sense once I found out what it was... it means the chest is con-caved in a bit

This is how they fix it.....

Another thing I didn't know what it meant was the "pes planus" which just means flatfoot(ed) which that I knew.

And the "acanthosis nigricans" which we talked about at the appointment, it's the darkening of the skin around - like the neck area - and is often a sign of pre-diabetes.  I have tried to scrub this off his neck but it doesn't go away.  :/  Scary.

"At this time I think it is reasonable to continue to attribute most of the symptoms and signs to Noah's Mosaic Trisomy 16" ... including his muscle issues.  He has strength - but his muscles wear out and weaken up very easy.  We've been trying to figure out what all could cause these muscle issues - can't figure it out - and Dr. G said ... basically, when Noah was conceived, of course his cells didn't reproduce correctly, and that includes his brain.  So his brain is wired differently and he thinks Noah's brain and muscles can't communicate well - so it's a neurological thing.

He also basically said that Noah wouldn't ever be able to live by himself.  I'm not 100% sure I agree with that, but I do know it's a huge possibility and we (DB and I) have already talked to the older boys about needing to be there and take care of their brothers.  Kaedyn is a little young to have that conversation with.  But still - to actually hear it - out loud - it's like BAM.... punch to the gut.

It doesn't MATTER that I have this knowledge already in my brain, that I have said it myself - and discussed it as a family.  It's like the Autism diagnosis.  I had speculation that Noah was on the spectrum all his life but was so on the fence - I'd be sure one day, and sure he didn't the next - that I didn't pursue it until recently.  Nathan I always knew was on the spectrum from the time he was 18 months old.  But when you actually HEAR - "your child has autism" it's like a punch to the gut, and a kick to the head.   Because - weirdly enough - when it finally comes down to hearing - yes - yes it's true - you start to think how everything is different now.  When - really - nothing is different.  They are still my kids.  I still love every ounce of them and wouldn't change them for the world.  But I have to carry the knowledge that ...  Noah and Nathan may never find love, or have kids, be parents, they might never be able to live by themselves....  and that's NOT just because of the autism but their separate medical issues, together, as a whole.  You see people with autism lead very good successful lives.  I'm not blaming that on the autism.  But it does weigh in.  KWIM?

My kids are druggies .....  this is their basket of what they hit on an almost daily basis.

 The first pic is of the boys nightly meds.  Nathan's is in the pink one, Kaedyn is in the green one.  Nathan has more pills than Kaedyn.... I think ... let me think a second.  Okay - so he has 5 pills and 2 half pills, so that's 6 right?   Tech.  Kaedyn takes six.  Nathan's is still MORE .. bigger pills.  And I have to grind it all up .....   and you like my notes in the med basket, one is when his G-Tube was changed, one is the last time I opened a new extension ... and one is what liquid meds he gets.

Liquid meds and crushed pills - ready to go in the G-Tube.....

I wasn't going to ask but I would be awful grateful for any prayers, positive thoughts, whatever you believe in sent Nathan's way. He hasn't been feeling well all week... he's been in a lot of pain (teething, migraine, ear pain) .... he's been vomiting off and on for the past 48 hours. Tonight we noticed that his right scrotum/testicle is very red and swollen again. His actual testicle is very large which is not normal - it's never been swollen to the size it is right now This is what landed him in the hospital in May (however we believe the sepsis was actually caused by an antibiotic he was on - but that is just an educated guess at this point.) .... He is NOT running a fever right now - which is going to be the tipping point. We know that if we take him in, we'll be sent to Seattle for them to evaluate him, and last time the only thing that held them off from hospitalizing him last time was the fact he didn't have a fever. So we know that THAT is the tipping point. He says it's sore, and it hurts, and we're keeping a close eye on it and taking progression pictures that will only be shown to the doctors. I ask that this is just a set back, something he fights off himself. This is the same testicle that was caught up by his hip until about a year ago and we were told could become cancerous. Suddenly he has all these problems with it. Just hope this is becoming a new "normal" for him and nothing else. It's scary though.

His Epididymitis is back.  I can't show pictures ...  but he's really swollen.  REALLY swollen tonight.   

This is basically what is going on .... 

This is starting to become a chronic thing :(  

Genetics Appt. No RSS & Diabetes?

Made it to the Genetic's appt.  We haven't seen them in 2 years.  Last time we saw them, they said 2 years unless something changed.  I made a 1 year appointment anyway - and ended up canceling it.  Then I made one earlier this year, and ended up missing it because someone was sick.  So I'm glad that we made it today.

Here is Nathan and Noah in the waiting room.

So the appointment went well - and wasn't EXACTLY what I had expected.

So Noah went first.  Dr. G was rather impressed with him and his progress.   He says that Noah's muscle issues are due to his MT16 because his brain wasn't formed right in utero - it formed different - and because of that his brain isn't communicating with his muscles correctly.  So this is something that he's going to have to deal with for the rest of his life.  He also said that Noah will have to be dependent on someone for the rest of his life - which I hope that isn't true, but it's something that we've been planning on anyway.  Noah is still small for his age.  He was 91 lbs and 59 inches.  Looking at the chart online - I think he's around 15% on the chart for his age for weight. And about 11% for height.

Using this Children's Growth Chart Percentiles Calculator - this is what it told me.

At 13 years and 5 months:

your child is 91 pounds, and that is
at the 20th percentile for weight.

your child is 59 inches, and that is
at the 11st percentile for height

Back to the muscle issue, he says he's doing really well with what he's got and was rather surprised with how much strength he can put out there.  He was impressed with the homeschooling and the progress he's made in the last couple years.  Even though he is still unbelievably behind, we are making progress.  Slow and Steady.

The other thing we had to discuss was Noah's "dirty neck syndrome"  ....  he has this perpetual dirty neck and no matter how much I scrub, I can't get it off - I keep nagging him about it.  Turns out it's a syndrome that can point to pre-diabetes.  It's common in obese kids (people) and those who are pre-diabetic or diabetic.  We checked Noah's sugar today and it was 163 - all he had to drink was one can of 7up and he had a tiny piece of cheese.  That was it.  He didn't really eat until after we got home.  So we're going to check it again in the morning and see what his fasting is.  (Edit: It was 88 for a fasting.  Which is great!!)

Nathan ........ oh Nathan.   So one of the first things he said was "I'm not sure about the Russell Silver Syndrome diagnosis."  ::: smacks my head :::  Really?  REALLY?   This again.  Nathan was diagnosed with RSS in April 2010, it was a clinical diagnosis which most RSS diagnoses are.  I think only about 10% (give or take) are actually genetically confirmed.  Basically - Nathan was diagnosed RSS because he fit the criteria.  But he's never been fully absolutely A-Typical RSS.  So a lot of doctors have made comments about how he doesn't have RSS and they are going to figure out the mystery of Nathan.  Which annoys the piss out of me.  But I guess when it's coming from the Genetic's Doc - who previously agreed with the RSS diagnosis - then I can't be mad.

He says he has some of the facial things, and other physical "symptoms" ... but he doesn't fit well in the RSS box.  That his brain issues are a major concern pointing away from RSS, and all of his speech issues.  So ...  he's thinking it's got to be something else.  It's definitely genetic, but he can't put his finger on anything in particular.    He's doing a carbohydrate deficient transferrin for congenital disorder of glycosylation.  He's also banking DNA and going for a pre-authorization for a Chromosome SNP array analysis.  Which is the newest and greatest in chromosome testing.  He kept calling the tests Nathan had in 2010 as "old fashioned" lol.  I'm like, geez, it wasn't that long ago.   But Dr. G seems pretty confident that it's not RSS now.  So I'm really confused.

Nathan was 42 lbs 44 inches.  He's not even on the charts for his age.  Roger and Dr. G were saying that he's about 50% tile for weight and height for a 5 1/2 year old.   Oye.

Using this Children's Growth Chart Percentiles Calculator - this is what it told me.

At 8 years and 3 months:

your child is 42 pounds, and that is
at less than the 3rd percentile for weight.

your child is 44 inches, and that is
at less than the 3rd percentile for height.

He kept calling me a great mother and that I was doing an amazing job with them.  Makes me feel good.

So here is Noah's Neck.

I guess it's called ACANTHOSIS NIGRICANS ....

I did a home PEE Dip on him tonight too.   He's spilling a TON of blood at the moment.  (He has kidney issues) ...   his Kidney Doc told me that it's not so much the blood - it's more the protein we have to keep an eye on.

His pH was off, Glucose and Ketones and White Blood cells (Leukocytes) were all good ...  Protein was Neg to Trace ...  and his blood in the urine was off the charts.  LOL.   I'm going to have him repeat it tomorrow too.  See how it is.

My Son Almost Died ....

It's like grasping onto a rope, hopelessly and helplessly - trying to surface for air but all you are doing is drowning ... you can't seem to gain control, and then finally, the rope is in your hand and your being pulled through the water ...  until suddenly - unexpectedly - you breech the surface of the water and finally manage to gasp for air - taking in each breath as it burns your lungs but it doesn't matter, because you are breathing.  You are breathing.   The shock is overwhelming, the numbness is a protective measure, and your mind tries to make sense of something that.... you may never, ever make sense of.

 I am not only the parent of children with medical issues, but I am the parent of a child who almost died.  Not just one child, either, but two.

I am still haunted - each week that leads up to Nathan's birthday I'm haunted by the memories that that seep in no matter my trying to block them off and just concentrate on the happiness and the moment...

Noah was so sick ... the local ER had brushed it off as a virus and never really cared to hear what we were saying, he looked like a normal little boy, he was demanding I read books to him to try to escape how bad he felt - but really he was a little boy trying to act not sick because he carries major white coat anxiety.  A child with so many medical issues, who's been through surgeries and countless tests, and he's not always truthful about what is going on or his pain because he fears needles and surgeries, and big human that make him pee in cups.

I can never forget the utter terror running through my veins that morning in April of 2007, when he was lethargic and unresponsive, vomiting and running a 104 temp.  I had to go two hours away to the hospital he was born at, the hospital that his brother would be born at sometime that week...  it was my last doctors appointment - and we were going to find out that day which day that week he (Nathan) would be born.  But here, at home, I had this super sick little boy.  I couldn't choose, I couldn't pick one child over the other.  So I did the ONLY thing I could do, and I picked both.

I had my husband scoop up Noah and put him in the van.  I pumped him full of ibuprofen and tylonel to work his fever down.  We brought a puke bowl, just in case.  We packed up like we were going to have a baby, and threw in some stuff for Noah - just incase.  All I could think was, if he was going to be admitted, I wanted us at the same hospital.

We got there, we went through my ultrasound, my appointment, baby was going to be born that Thursday  Then we focused on Noah, we got him in to see the Urgent Care.   I remember being back in that room for an hour before a doctor got in to see us.  By the time she did, the ibuprofen had worn off, the tylonel was long gone out of his system ... and he was burning up, asleep in my arms, and not waking up ....  I was terrified.

Mostly I was terrified that no one would believe me on how sick he was.  How sick I knew he was.  I felt like I was going to get blown off again and I was going to cry.  This was not my child.  I felt like he was slipping away from me and I couldn't do anything about it.

Then she came in, the doctor, and she sat by me....  and she took one look at him, and it was like she knew.  She knew.

She reassured me, she could tell something was wrong.  She was already talking about admitting him, what tests she was going to do ....  and I just felt ...  free.  Finally someone believed me.  Finally someone took notice to how sick he was.

She later told me, after it was discovered that he had C-Diff, and was in kidney failure, that he was close to dying.  If we hadn't gotten him in when we did - he would have been dead with in a few days.  There would have been no fixing him.  It would have been too far damaging to his tiny little body.

If that wasn't enough....  if the fact that before he was even born I was told he wouldn't survive, period wasn't enough....

I have to go through it again?  Now with Nathan?

Last fall when Nathan was running that mysterious 106 temperature ....  we were taken by ambulance to Seattle ...  but it was just a form of transportation ...  We were scared.  We were watching him and we were scared.  But we never got to that point where we were worried.  We were close, but we weren't there.....

This all started 2 weeks ago.  Just ...  two weeks.

I guess the first clue that things were serious, was when they decided to transport us by ambulance... and we got in the ambulance, and the EMT says "We're going to go lights and sirens, just to get there quicker."

He made it sound like it was no big deal.  Something told me it was.  I brushed off my fears, let myself believe that it was no big deal. But I was messaging his Dad, my Mom, one of my best friends.... freak-king-out....

I remember, the ambulance had shown up super quick.  DB didn't even have the time to get home and get back because he went home - five minutes away - and pack up some stuff.  It sounded like he was definitely going to be admitted.  The ambulance showed up - whisked us away .... and now we were headed to Seattle with the lights and sirens going.  And I remember messaging DB going ... "do you hear the sirens?  Do you hear them?  That's us!"

I remember looking out the back windows of the ambulance, watching cars pull over and watching cars not pull over and thinking what kind of idiots are they ....

Nathan slept.  He doesn't even remember the ambulance ride.  That's what he says now, anyway.

When we were about to get to Seattle Children's .... the EMT in back with us called ahead, and was giving Nathan's stats and he said a few things that caught my attention ..... "Severe Sepsis" and "Kidney Failure" ....

.... I thought, have they gotten Nathan's records mixed up with Noah's?

I messaged my Mom, I messaged Dennis.... I messaged one of my best friends....

I looked at the EMT ... I said "Did I hear you right?"  and he said "That's what we were told, that's what's on his paper work" .... and he handed it to me.  The stack of paper work that was accompanying Nathan.  It showed the blood test results... and various other things....  including the six diagnoses....  including Severe Sepsis and Kidney Failure.  It was right there ... in black and white......

I looked at his blood tests but without google, I really couldn't make heads or tails of it.... but there was definitely some stuff going on ....  levels were high, levels were low....

It was clear my baby was sick.

We got to the ER in Children's and we ended up spending the rest of the day in the ER.  There was a debate - if he should be placed in ICU or on the floor.  It ended up being decided that they would place him in a regular room but the ICU staff, specifically the Risk Nurse, would follow up a few times a day.  We got to the ER at home around 8 AM ....  we got to the Hospital in Seattle right around Noon.  WE DID NOT GET A ROOM UNTIL after Midnight!!!

With in a few day, Nathan got better.  On Mother's Day I was excited.  He was better, he was eating and I got him up to walk - and he wanted to walk more. He was looking AMAZING ...

But then the unthinkable happened.  He went from maybe going home in the next couple days, to being rushed off to the ICU.....

Nathan was in Sepsis Shock.

Lets have a little lesson on Sepsis .....

Many doctors view sepsis as a three-stage syndrome, starting with sepsis and progressing through severe sepsis to septic shock. The goal is to treat sepsis during its mild stage, before it becomes more dangerous.

Sepsis

To be diagnosed with sepsis, you must exhibit at least two of the following symptoms:

• Body temperature above 101 F (38.3 C) or below 96.8 F (36 C)
• Heart rate higher than 90 beats a minute
• Respiratory rate higher than 20 breaths a minute
• Probable or confirmed infection

Severe sepsis

Your diagnosis will be upgraded to severe sepsis if you also exhibit at least one of the following signs and symptoms, which indicate an organ may be failing:

• Significantly decreased urine output
• Abrupt change in mental status
• Decrease in platelet count
• Difficulty breathing
• Abnormal heart pumping function
• Abdominal pain

Septic shock

To be diagnosed with septic shock, you must have the signs and symptoms of severe sepsis — plus extremely low blood pressure that doesn't adequately respond to simple fluid replacement.

Sepsis ranges from less to more severe. As sepsis worsens, blood flow to vital organs, such as your brain, heart and kidneys, becomes impaired. Sepsis can also cause blood clots to form in your organs and in your arms, legs, fingers and toes — leading to varying degrees of organ failure and tissue death (gangrene).

Most people recover from mild sepsis, but the mortality rate for septic shock is nearly 50 percent. Also, an episode of severe sepsis may place you at higher risk of future infections.

Early, aggressive treatment boosts your chances of surviving sepsis. People with severe sepsis require close monitoring and treatment in a hospital intensive care unit. If you have severe sepsis or septic shock, lifesaving measures may be needed to stabilize breathing and heart function.

Medications

A number of medications are used in treating sepsis. They include:

• Antibiotics. Treatment with antibiotics begins immediately — even before the infectious agent is identified. Initially you'll receive broad-spectrum antibiotics, which are effective against a variety of bacteria. The antibiotics are administered intravenously (IV).
  After learning the results of blood tests, your doctor may switch to a different antibiotic that's more appropriate against the particular bacteria causing the infection.
• Vasopressors. If your blood pressure remains too low even after receiving intravenous fluids, you may be given a vasopressor medication, which constricts blood vessels and helps to increase blood pressure.

Other medications you may receive include low doses of corticosteroids, insulin to help maintain stable blood sugar levels, drugs that modify the immune system responses, and painkillers or sedatives.

Supportive care

People with severe sepsis usually receive supportive care including oxygen and large amounts of intravenous fluids. Depending on your condition, you may need to have a machine help you breathe or another to provide dialysis for kidney failure.

Surgery

Surgery may be needed to remove sources of infection, such as collections of pus (abscesses).

This picture (above) is the impact picture on how sick he was.  He was hooked up to SO MUCH stuff.  They were pumping him full of fluids.   He was so swollen ....  

Here is an example of his swelling - this was the day he went to the DR (day prior to hospital) and the first day at the hospital.

Nathan went through all of that - right up to possibly needing the surgery.  He had a UTI, he had an infection in his scrotum which included a small abscess and they determined he had Ecoli also.

We are lucky.  We are, and I know it.  We are grateful to be home.  We are grateful he's on the mend. He's working on healing ....  it's going to be a long road for him.

We are grateful to have HIM home with us and on the mend.

It was all processing with DB while Nathan was in the hospital and I couldn't even begin to process it until after we got home.  It's been five days since we got home.  I'm still processing it.  I still feel as if I'm drowning a little.  I can't make sense of it.  The writer in me has to make sense of things.  This lead to that which caused this reaction and .....

You can't make sense of your child almost dying.

You can't.

I even spent some time looking for support groups today.  There are none ....  none that I could find anyway ...

I realize I need help processing and I can't seem to find any.

I need to express but I can't and don't want to dwell on it ....

I don't know how to get out of this sinking feeling, this feeling like I'm drowning in the what could have been or the what if's ....  I don't live in that space, and I don't like that space, I like to live in the now.

When you have a child that you are basically told is going to die before he is even born, you have to live in the now.  You have to live day to day and not dwell on yesterday or tomorrow.... worry about what is ... right... now.  Celebrate each day the best you can.  Love, Laugh, Learn, Live.  When you know that anything could happen, at any time....  it's hard not to take each moment and cherish it, because that's exactly what you should do.

So I don't understand why I am having such a hard time, after the fact .....  it's not the first time my child has almost died, or that I have been faced with some great odds against us - or even known that my children may have a time clock ticking down faster and hard than my own.

I choose not to live in that .....

....  so I just want to escape it right now..   but the grasp is tight, and it's choking me.

Fireworks and Autism/SPD

. Any parent of a child with Autism or Sensory Processing Disorder (SPD) knows how difficult noises, especially loud unexpected noises, can be.  It's NOT FUN.   Add into that the factor of getting over stimulated, and a bunch of other factors that could totally send our kids with sensory issues over the edge, and it makes a day like 4th of July - that's supposed to be a ton of fun - just not fun at all.

I know that since Noah was born, we haven't gone to a live firework show since he started expressing sensory issues but a few times.   So that means in 12 years ... we've gone two or three times.   I can think of one off hand.

We usually try to get some of the smaller fireworks that we can do ourselves, sparklers, that sort of thing.  We do those.... but we can't always afford to do that.   Where we currently live, if you sit outside you can see a couple of different displays.  Sometimes not so well because of the trees, but some get high enough for the kids to really see well :)   So the kids who WANT to go outside and watch.   Noah is usually one of them, Nathan is not.  

On 4th of July, for Nathan, it's just like any other day.  We go over to Nana & Papa's for a BBQ and then home and do what we do normally including his bedtime.   The rest of the kids play outside and come in after fireworks.

So one of my really good friends ran into an issued with her SPD child ....  they were out and setting off bottle rockets.  Normally he loves that sort of thing but this year either he got overwhelmed or something.  The over stimulating caused him to go into major (the worst she'd ever seen him in) melt down mode.  It took hours to get him to calm down.

So that inspired me .....  I thought of several things to help make a day like Forth of July run a little smoother....  

that one didn't look real good on facebook so I made this one too ....

For more information and other ideas....  

She found this link...
4th of July and Dealing with Over-Stimulation 

And I found these links.....
Tips for an Autism Friendly 4th of July
Autism Ears, Loud Noises and Fireworks! – Oh, My!