Friday, May 22, 2015

Tales of Ocular Hypertension

You send your 13 year old to the Eye Doctor thinking it'll be normal and un-eventful.....

Then you realize....  this is your child named Noah ......  nothing is normal and un-eventful with him.

Hubby starts messaging me .... "something wrong with Noah's pressure in his eyes" ....




"They are doing a lot of pressure tests on his eyes"

nothing is ever easy ...

So what's going on?

Other than Noah being SUPER happy .....

The pressure in his eyes is 25 - a little higher than "normal" and concerning enough.

There is a possibility it's early signs of Glaucoma - yes, kids can get Glaucoma ....

He may have to start drops in two months  ....

The Doc thinks it maybe connected to his Mosaic Trisomy 16.   :: sigh ::

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.


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.


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 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.

Saturday, May 16, 2015

The Monkey In The Asylum *Day 11* We're Going HOME!

Previously .... on the Crazy Hospitalization ....
The Monkey In The Asylum *Day 1-2*  ,,,,
The Monkey In The Asylum *Day 3* The ER  ....
The Monkey In The Asylum *Day 4* The Day of Sleep 
The Monkey In The Asylum *Day 5* Party Like A Rock Star 
The Monkey In The Asylum *Day 6* Crashing Down Down Down 
The Monkey In The Asylum *Day 7* On the Roller-coaster
The Monkey In The Asylum *Day 8* Exhaustion
The Monkey In The Asylum *Day 9* Out of the ICU
The Monkey In The Asylum *Day 10* No End in Sight.... 


So he is off IV fluids and support. His cath was removed (with resistance and two attempts)... In 4 hours he will have a bladder scan. Depending on that, we could finally go home. He seems to be tolerating his new oral antibiotics...

After the doctors started to trickle in a bit .... and they shocked me by saying that most likely - we'd be going home!  I was ... truthfully - a little scared, but oh so excited.

I am faced the fact that my son was sooooooo sick he was in the ICU and they ALMOST couldn't manage his blood pressure.  And he flipped the coin so quickly from doing so well to doing badly and lets face it - we THINK it was because of the meds, but we don't REALLY know for sure right now.  And that's scary.   That's really scary.   Luckily - we are literally 5 minutes from our local hospital and ER.

Nathan was showing a little more of himself, and that made me feel better.  He was "cutting" his fruit, putting it on the end of a fork, and eating it... lol....

He pooped!!!

So I made him get up and walk.  They unhooked him from all the monitors, and didn't put him back on.  We walked down to the parent lounge, down the hallway the opposite way, went back to the room and after awhile we walked down tot he playroom.

When we got back, he wanted to sit in the chair instead of the bed.  Yay!!!  I ended up taking off his leads and all that....  and we got dressed in REAL clothes prior to walking down to the playroom.

This was a really cool mobile in the parent lounge.  I got a picture of it after we got the okay to go home and I was packing up the food we had left in the refrigerator and freezer in the lounge.

Nathan didn't need to be told twice -  He got in his wheelchair and he put Sam in his shirt, and hung onto Ben and was all ..... lets get out of this joint!!!

And he was BEYOND happy when we got in the van .....   We're OUTTA here!

Goodbye Seattle - can't say it's been fun.   Not this time....  

He finally crashed in the van on the way home....  still holding Sam and Ben by his side...

Home ..... I'm ready to sleep for a year....

But here is his feed bag for the night.   Home Sweet Home!  Yep!

Friday, May 15, 2015

The Monkey In The Asylum *Day 10* No End in Sight....

Previously .... on the Crazy Hospitalization ....
The Monkey In The Asylum *Day 1-2*  ,,,,
The Monkey In The Asylum *Day 3* The ER  ....
The Monkey In The Asylum *Day 4* The Day of Sleep 
The Monkey In The Asylum *Day 5* Party Like A Rock Star 
The Monkey In The Asylum *Day 6* Crashing Down Down Down 
The Monkey In The Asylum *Day 7* On the Roller-coaster
The Monkey In The Asylum *Day 8* Exhaustion
The Monkey In The Asylum *Day 9* Out of the ICU


DB ... the bed hog at home, and in the hospital....  his feet always claim the whole bed.  Now, his excuse?  I wanted to be close to you!!  Yeah, one day I will wear spurs to bed and jack you up!

Our amazing Super Nathan!  Not feeling well again this morning.

Friday Morning Update: I was kinda waiting for rounds. But not sure when that will be. We got moved out of ICU last night.. Yay!... Still no idea when we are going home. So Nathan is nauseated this morning. He is peeing out more than he is taking in. His left testical is swollen now. Noticed it was swollen last night, it's swollen a little more this morning.. His stats are good but his blood pressure has been on the low side the last three. Hoping that picks up. He isn't passing gas or pooping, they are talking about an enema. I think that's about it right now. He is sitting up this morning. Eating a tiny amount (4 bites of eggs and 2 bites of bacon.. A sip of milk.)...

Doctors are doing rounds on the room next to us, my guess.... we're next....

My message to Nathan...... Eat - Drink - Poop and GET BETTER!

Pretty much the plan was for him to start moving his tummy and hope that things help ....  oral antibiotics were ordered for tonight...  and it was noticed that now that his right scrotum was looking so much better, not swollen, not red, not super sensitive to touch.....  the left one is starting to swell.   It started to swell last night and then was worse this morning.

We are being SILLY ....

Seriously - do you know how amazing it feels to see him smiling again and laughing!  <3 Love!

Poor Piggy's eye got jacked cuz I accidentally put the side of my hand on it..... when... it... was...still... wet....

Mommy made him a SUPER NATHAN hat!  HE ... was....  not impressed.  ::: le sigh :::

Better picture of his room ... both sides.

Poor kid is just soooooooo tired.  He sleeps... a lot.   After arts & crafts he was just .... meh... I'm done.

Guess they are going to get him started on some oral antibiotics tonight. Make sure he doesn't have a bad reaction to them. Maybe get rid of the cath tomorrow. He eats very little. Drinks even less. Super weak. But he's starting to laugh and smile more. We see peeks of Nathan.

Kaedyn and I video chatted .... he says "We face-timed" ...  he figured out how to call me on FB and Google Plus and yeah.....  he knows - he is a smart cookie....

After awhile, we just make faces and stick out our tongues at each other.....

Nate sleeps.....

Um.....  I have to amuse myself SOMEHOW in here....

Yeah - he pretty much slept all day after arts & crafts.   And me?  Well.... I was all by my lonesome (DB went home to check on the kids and do some stuff cuz it sounded like we'd be there all weekend and until at least Monday) ....  so I dug into the chocolates I got for Mother's Day .. and well, I stopped after the second one.  I don't enjoy allergic reactions so it put a damper on things.  Luckily it was minor and I worked through it myself, but dang .... I almost had to ask for benedryl :( They look nummy though!  Wish I could eat them :(

We are grateful for EVERYONE who's prayed, sent positive healing thoughts vibes whatever.....  for everyone who has sent things to cheer up Nathan (and myself) .... for everyone who has kept up on updates and messaged me (even though I wasn't very good at getting back to people) ....  for our visitors!!  It was a nice break.  For everyone who did the smallest thing to the greatest thing.   Thank you!!!

Continue onto Day 9 in the hospital :  The Monkey In The Asylum *Day 11* We're Going HOME!

Thursday, May 14, 2015

The Monkey In The Asylum *Day 9* Out of the ICU

Previously .... on the Crazy Hospitalization ....
The Monkey In The Asylum *Day 1-2*  ,,,,
The Monkey In The Asylum *Day 3* The ER  ....
The Monkey In The Asylum *Day 4* The Day of Sleep 
The Monkey In The Asylum *Day 5* Party Like A Rock Star 
The Monkey In The Asylum *Day 6* Crashing Down Down Down 
The Monkey In The Asylum *Day 7* On the Roller-coaster
The Monkey In The Asylum *Day 8* Exhaustion


Nathan woke up super nauseated again.  Cold washcloths are major comfort to him.

We got news after rounds that we were going to be moving to a regular room.  I didn't hesitate on packing up!

Then we found out that it was going to be awhile and we may end up staying one more night in the ICU.  Nathan was just tired.

They did a suppository on him....  brought this in.   Yep.   That's about all he did - stare at it. 

Look at those stats!!   Soooo much better!!!  Amazing!!!  And off soooo much of the support!  Eating strawberries in bed.....

Nathan got a bath (real water and soap bath - not the bath wipes - still while he was in bed), bedding change, new leads, new gown (he isn't naked anymore!) .... He isn't eating much, drinking a few sips here and there.... Now he is taking a nap. He has been smiling and laughing! Which is amazing!! He is still extremely weak. He can barely move himself. He needs help to sit up. But that will get better. We are still in the PICU and maybe here tonight too. ‪#‎SuperNathan‬. Thank you to those who got him the Elmo and black Bear, he loves them. Sorry I haven't had the chance to thank you properly.

3pm he just petered out .....

Nate's nap gave DB and I the chance to eat together, in the tiny little parent lounge with no windows and three chairs.  Which was really nice, eating together, not the room ....  I'd been sleeping in a chair, couldn't eat together... had to walk a mile to pee .....  but I came back from dinner and saw this.  I turned, found Sam (his day nurse) and said "Does this mean we have a room?"   She's like - yep!

Last pictures of Nathan in the ICU ..... just before they started to move his bed through the hallways.... he was sleeping.  He slept the whole time.

This is the back of Sam the awesome nurse taking Nathan to his new room with some help....  and us with our large amount of accumulated stuff.....

We ended up getting placed right next door to the room we had started out in.  After the ER we were placed in the "old room" which we were in until he got put in the ICU... and after the ICU we were placed in the "New Room" .... ha ha ha... funny.

Scale and potty outside the door ....  Nathan lost about 3 lbs  :(

We got a care package from a fellow RSS Mom and we soooooooooo greatly appreciate it!!!  Sadly, they didn't even bother to let us know and we had to hunt it down.  Boo!

Nathan in his NEW room.... giving me the "eye" ..... well.... eyes....

Nathan's Room .....  we never had a roommate in this room - woot woot!

Continue onto : The Monkey In The Asylum *Day 10* No End in Sight....