Hazel Gets Her Wings!

Actually, Hazel has always had wings.  
She's been an angel since day one. 

What I am referring to are her wings to get out of the hospital. She has been so terribly sick since November 5th and in order to go home she had to have her shunt replaced.That required so many things to happen first.  First they had to diagnose what was wrong.

Looking back on it now this is my take on what happened. In mid-August Hazel had a major surgery involving her intestines and a complete bladder reconstruction.  Her recovery was smooth and quick. Then, out of the blue it seemed, she got very sick, very quickly a few weeks ago.  She became very pale and lethargic and non-communicative within a few hours. They couldn't figure out what was wrong.

After several days the doctors thought that possibly there was a micro leak in her bladder that deposited bacteria into her abdomen. That bacteria began to grow causing an infection that produced some seriously bad results. That in itself would have been a grave illness, but it was also compromised and became deadly because of the shunt that drains her cerebral fluid from her head into her abdomen.

When a person has hydrocephalus they need a shunt to carry that excess fluid away from their head to be absorbed by their body. We all have this drainage but in a hydrocephalic person the opening is nearly closed at the base of their skull so the fluids do not pass through and collect in the cranium causing terrible pressure. 

The CSF (Cerebral Spinal Fluid) has been draining from her shunt (which is a tube inserted into the ventricle in her brain that has the drained right into her abdomen since she was a newborn when her original shunt was placed.)  So that created a conduit (or an escalator, in a sense), from her abdomen right into that fluid.  So as that bacteria spread around her body she became gravely ill and systemically infected. That was when she was diagnosed with septic shock and not waking up.   Peritonitis in the abdominal cavity is a bacterial infection that can be fatal.

Fortunately there is a very excellent infectious disease team at Primary Children's Hospital.  They were able to identify the bacteria and the suitable antibiotic for treatment.  It was widespread so it took time to get it under control. After the first few days in the PICU, She was moved to the Neuro Trauma Center; a more specialized ICU for neurology patients.  There she acquired another set of physicians to watch over and care for her and report to us what they were finding with all her numbers and tests.  They have been fabulous.   They added one more team, the neurology team that would be in charge of replacing her shunt.  All of these people have been super amazing.  They're all so helpful, so kind, so brilliant.  Every nurse, every technician, pharmacists, even housekeeping has been wonderful.  I cannot say enough for the surgeons, the radiology department, the phlebotomists. Without exception they are the creme de a creme.

In recovery after the last surgery!

The shunt replacement

3rd surgery during this stay.

The shunt replacement happened yesterday finally. When everything was perfect and they felt the bacteria was under control, the surgery was a go.  This time they decided to do what they call an AV shunt.  The tube goes from the brain to her left upper chamber or atrium of her heart. The two atrium chambers of the heart draw fluids into the heart and the ventricles of the heart push the blood and fluids out. 

This is a better solution for Hazel as if there are any other times when there is seepage from any of her surgeries the infection will not will not land up in the CSF.  So the risk of ever getting spinal meningitis again is reduced considerably. 

So as I said this is just my take. But primarily this is what I saw happening over the past 17 days.  There is a very good possibility that Hazel will put on those pink wings and fly right out of here in the next day or two.

Just got the word!
DISCHARGE 
Tomorrow she will come home!

True Love and Happiness!

Hospital Highlights

Weekends at the hospital are different than weekdays.  You still get excellent care but not quite as many decisions are made during that time when a lot of the doctors are off work. It is just a little more casual and relaxed. It was a good time for the guys and kids to cover our spots in the hospital. 

It snowed this week and temperatures dipped way below what a born and bred Californian can handle.  So the weekend was sunny but cold.  Jen, Piper and I went to get manicures, ate lunch out and had a little girl time.  It was nice that grampa stayed over night one night and Lowell stayed the next night so Jen had two nights at home with the other kids.

Hazel had a visit from her teacher,

Miss Page and that was great.  

What a wonderful school she attends.

 Everyone has shown such love

 and concern for her.  

One day Hazel had Mommy put on 

Lee Press-On Nails.

They lasted about ten minutes 

but she loved it!  

So glamorous!

Another day she played Uno with one of 

the Occupational Therapists.

Hazel told her she had only played one time.

She also told the lady she was going to win!

Hazel won both games they played.

Hazie was quite "chuffed" about that!

I love it when my English friend,

Marie, says chuffed.

The OT Department came around with 

a large cart filled with picture 

books & chapter books.

  They asked Hazel which she preferred. 

 Chapter books!  

So they gave her this one to bring home!

The hospital really goes all out to see that the kids have something fun to do when they are feeling better.  

 This award is embedding in the flooring 

as you enter the hospital!

It's one amazing refuge for sick children.

If we ever get super wealthy this

is one place I'd really love to make a donation!

Hazie Steady & Holding Today!

Today looked something like the above here in SLC. It was damp and transitioning into the time we call winter even though the calendar tries to convince us it's still fall.  It was a good day to be inside even though the hospital temperatures remain coolish. With jeans, a long sleeved shirt and warm vest and knit scarf I was comfortable all day.  I tried shedding the outer layer a couple of times but it didn't last long. Hopefully some autumn days will return but right now it sure doesn't feel like they will. :-/

Hazie was pretty good today.  Her moods would fluctuate with the length of time between her doses of Tylenol.  Jen says and I agree, that she is not good at self-reporting pain, so you have to go by her breathing and disposition.  The minute she gets cranky or her breathing very labored...the culprit is pain.

It is normal that she would have pain after all they did to her yesterday.  I stayed with her for three hours today while Jen took care of some other things and I enjoyed how cute she is about asking every nurse exactly what they plan to do to her. She asks what everything is when they walk in the door and then instructs them on how she likes her IV meds to be administered slowly, not fast.  If they don't get it just right she corrects it with, " Please go a little slower,"  or "You can go faster than that...just not too fast."  It is quite cute because she is polite but firm in what she wants. The do their best to comply. Today her throat was sore from the intubation.  She asked all kinds of questions about that and was an expert by day's end.

She made silly putty from powder and water.  Yucky and brighter than the brightest pink on this page.   Hazie didn't really want to touch it much so guess who made stuff with it for 30 minutes?  Yep...me.  I can make a mean looking snake out of wet, slimy, silly putty.  I also made it twitch around and that made her laugh a lot.

Because Hazel had her ups and downs today she was still looking for something to eat.  But when it arrived she often couldn't or wouldn't eat any of it.  I think she ate one dinner roll today and the sandwich part of an ice cream sandwich...no ice cream.  Oh and one quarter of a ham sandwich.  Her order was this, "A ham sandwich on white bread with a 'titch" of mustard, and a "titch" of mayo.  The titch of mustard was the size of a pencil eraser and the titch of mayo was the size of a dime.  She is a nutty noodle that kid!

Hopefully Grampa who is doing a sleepover with her at the hospital had better luck than I did.  The last text we received he was trying to convince her to try almonds and prunes.  I guarantee you that just ain't happenin'!

Today Hazel got more mail and presents.  We are going to need a truck to get her stuff home when the time comes. Look what Chloe, Piper and Grampa brought her from one of the teachers are her school!  It is overwhelmingly large and squishy as you can see.  She was delighted!  Such a sweet thing to do and it's from Chloe's 4th grade teacher, Jo Payton. Chloe's 5th grade teacher, Ms Jimenez, gave Chloe a stuffed llama. (Her favorite animal!)  Nice teachers at their school for sure.

There is not much room left in this room!

Hazie got to go down to the gym for some crafting this afternoon.  It didn't last too long as when she is away from her bed her drainage tube in her head has to be clamped off.  When that happens the cranial fluid quickly starts accumulating and it give her a bad headache.  We will be very happy when that new shunt is put in.  Hopefully with some very good luck and rich blessings it may be as soon as Tuesday. We'll see.  It is still very much one day at a time.

Her infection is looking like it is retreating more according to the numbers but some of the fluids they aspirated yesterday need time to grow cultures if they are going to do so.  They want to make sure it is more of the same bacteria and not something new.   Since the pocket of fluid they could not reach would require a major abdominal surgery they are foregoing that unless absolutely necessary.  

The new shunt will now be placed in her brain and drain down into one of her atrium (upper) chambers in her heart.  It is amazing what they can do!  But this little girl has very little inside her that has not been corrected or repaired by some form of surgery.  She is tired.  Her mama and daddy are tired. We are just glad to be here to give a little moral support and help with the easy stuff.  It is nothing more than any one of you would do under the same circumstances.  Your prayers and good wishes and kind words are keeping us all afloat. Thank you!

Beautiful sunset as were were leaving the hospital.

Today Went Very Well for Hazel!

This morning we woke up to a velvety blanket of snow.  It was so pretty and so cold.  The kids had that excitement of the first snow of the season.  I love the way it clumps on the spruce and pine trees and on the hedges and other shrubbery and looks glittery in the sunlight.   The snow is quiet, clean and pure white.  It is a rare sight to us from the Pacific Coast.  

However, inside the hospital it was like any other day.  Or so I thought when it began.  Hazel's surgery was to begin at 10:30. Jim and I arrived at about 8:30 and I settled in with Jen and Hazel before he took off to finish cool projects at their house. This time he has hung lots of curtain rods and curtains in Piper and Julia's large bedroom that spans the whole width of the back of the house.  It looks great. 

Hazel was lively this morning and ready to go for the surgery. The only things that ever troubles her are the IVs and once she knew there would be nothing like that going on, she was fine.  Before we knew it, it was time to go down to surgery. 

Here she is being wheeled out the door to go to the Internal Radiology Department for the surgery.  We went down with her to the OR.  The room had a very high ceiling with all kinds of basketball paraphernalia all over it. The cabinets where they stored their supplies and their instruments, all looked like sports lockers.  There was a trophy case with basketball stars in it.  It is the coolest OR I've ever seen and perfect for kids.  Everything about it was state of the art.  I was so impressed that they let us come in with her while they were prepping her and getting forms signed by Jen.  They probably found that having a completely sterile field was far less important to the overall health of the child that having their family touch them and hug them and be near them until the sedation began to work.

While I was sitting there in my ring side seat observing all that was going on I had an epiphany of sorts about what I was seeing.  The room contained some of the best people in the world.  They were so kind and loving towards, Hazie. They were among the best in their field, the cream of the crop, and they showed so much professionalism with a lovely mix of humanity.  The epiphany went something like this.  It occurred to me that one of the many things that makes Hazel such a radiant child is the way she is treated by other good people. She knows nothing of any relationship that lacks love and kindness towards her.  I was just thinking about what life would be like if everyone had that in their lives.  If we in turn then treated everyone else like that it would be heavenly.  It was a tender moment of quiet reflection.

Here is Hazel's surgeon talking to her.  She was very comfortable with him.  He did a wonderful job tuning her up. They aspirated some of the abdominal fluid and it was still infected.  So more antibiotics and perhaps, if needed, another surgery to remove the fluid from an area that was too deep to be aspirated.  They repaired a few other things as well. The shunt surgery could be as early as Monday now they are saying if the Infectious Disease attending physician approves that.  But things roll very slowly there as they wait for the optimum time to proceed.  So we'll see.

So Hazie recovered quickly from all of the anesthesia and was back in her room by noon.  She slept quite a bit and all she wanted was food.  It was quite ironic as most days she doesn't want to eat much at all.  Of course she had to wait and that made her a little cranky, but she is sleeping soundly tonight and waiting for news of what's next in the morning when once again all three teams will swarm her room. They'll give us the up to the minute assessment of what they discovered today......and the latest plan for her will begin to unfold.   

One of the best parts of my day was just being with Jen. We had a great time just being together.   

Hazel Gets a Tune-Up Tomorrow!

For Hazie

Today I am finally getting a moment to write to you. This hospital is one busy place.  There is literally someone in this room to visit Hazel every 7-10 minutes.   Her three teams of doctors were all swarming around the room shortly after I arrived at 8:30 am.  They were still collaborating on what to do about the two problems.  (Her compromised PICC Line and the pockets of fluid in her abdomen.)  The problems they feel are rather simple to fix but will require a general anesthesia so that means they might as well give her a tune up while they are in there.  So there will be three procedures rolling forward tomorrow morning at 10:30 am. She is feeling better each day until they do something like a "procedure"  that can put her back tracking just a little.  But they are hoping that these procedures will get all the infection out so that she can have the new shunt put in soon. She cannot leave the hospital until that happens so we are looking at several more days, maybe a couple of weeks.  

She is such a little trooper.  She just keeps saying she doesn't even want to go home.  What? Anyway she gets along with all the staff and they love her. She is very funny. The other day she asked a team of 8 adults working on her IVs, "Hey guys, what does fumigation mean?"  This hospital is one of the top Children's Hospitals in the world for a reason.  They strive for excellence and they are fantastic.   Each and every one of the people that work there are great with kids.

Cassie and Hazie sing!

Today she had music therapy which was so much fun.  I posted two little clips of them singing on my FaceBook timeline. She also painted a wooden heart for her Mom, she took a little ride in her wheelchair with her IV pole and all the tubes attached to go to the gym with her PT. 

PT games

She opened and read a lot of mail from school friends, and she had presents delivered.  She is so sweet about loving the things people do for her.  (Katy, your package arrived today and she was very pleased.  Thank you, Borem cousins!)

Being at the hospital is like the movie Ground Hog's Day. Repeat, repeat, repeat.  But you just do what you have to do and keep your spirits up as high as possible.  Hazel passes her good cheer to everyone around her and we give it right back to her.  In that way...somehow (with your good thoughts and prayers) we survive it.  And she gets better.

So tomorrow after the surgery we hope she is three steps closer to well.

We are going to be here for Thanksgiving which in the beginning we had not planned  to do.  So it's just about time to buy a turkey, right?  Here a shot I took from the front porch yesterday.  By morning there will be a dusting of snow out there.

Happy Autumn!

Hazel's Update for November 15, 2016

Pink Pumpkins

Today was an amazing day.  I should say it started out that way. Hazel was feeling pretty chipper but the medical team is not happy with several things.  Bottom line is I was there for most of the day and there was no time to write a blog post because I was there to take care of her. The physicians ordered a CT Scan and X-ray to check for the bacteria lurking in small areas where the antibiotics are not working. The decision tonight is that she will have two "procedures" tomorrow.  She had a lot of trauma with the IVs today.  One procedure is related to the compromised PICC Line and the other is related to some pockets of contaminated fluids in her abdomen.  This news comes only from the nurses so we have yet to hear the physician's versions of what they are doing and why.  

I would write more but I am going back to the hospital tomorrow morning early and need to get some sleep. Tomorrow I should have more time and more to report. Thanks for hanging in here with us and for all your prayers and support.  You are making a big difference in her life and we love you for it.  

Here she is with Julia looking remarkably healthy. I guess looks can be deceiving sometimes. But she was happy today and that was the best to see.  Just when she starts looking and acting more well...something new crops up.

Recovery Is A Winding Path For Miss Hazie...

Not every day can be perfect, especially when you are trying to get well.  Yet we must keep going and trusting and knowing that eventually it will all work out.  We, as a society, are impatient. We want simple fixes to complex problems and we want it now! I have gotten a new perspective of just how many hours there are in a day when you are waiting for something.  A lot of them.  I'm also keenly aware of just how long a night can be when you wake up at 3:00 am in someone else's house. You must just lie there quietly so as to not wake up five other people and two dogs. There are a lot of hours we just lose track of when we are not waiting for something.

Hazel has patience.  Think of any 9 year old you know and imagine them lying in a bed for over a week with not much to do. When there are setbacks she just goes with it.  We all have to do that when we have setbacks.  It is how we choose to handle those setbacks that matters most. Hazel has this part down cold.  P.A.T.I.E.N.C.E. and G.O.O.D.  C.H.E.E.R.

 She has had a bit of a set back today although nothing official has come from it as of yet.  All we know is they did not give her her tylenol last night and this morning she was not feeling great and was not very talkative and not wanting to eat. She was clammy again and irritable. 

That seems to have been part of a trial with her shunt today and regulating the pressure in her skull as it drains the spinal cranial fluid. (SCF) A headache is not a good thing so they are observing and then may need to do another scan if she should develop pain in her head.  We are kind of in a stupor every time they try to explain what they are doing with the shunt.  Hazel may not need another one if the fluid can drain on its own, but if not then she will require another shunt which means another big surgery and long recovery period.  

They cannot replace it until they are certain there is no bacteria remaining in her body that is causing the infection for a minimum of five days. That is where the set back seems to be.  The white count is not stable.  It has its up and downs.  They had hoped for a complete drop after a few days but that is not happening.  It is gradually going down but not like they want it to do.   

While they are testing all of this they have put a temporary drainage tube in her head.  Of course she cannot go home until that is removed, or a new shunt has been placed or...whatever else they can do about that.  So first the infection has to be resolved.  It is a slow row to hoe.

So patience is needed for all involved.  And as I said the road is winding.  As it turns out they did need to do a CT Scan this afternoon and it is clear that she does need a new shunt for sure.

The things that remain constant are these:

God's watchful care over his little angel.

Great medical staff at the hospital.

Constant love & prayers for her from you and us. 

Hazel's constant & unfailing ability to cheer us all

 and be courageous in all things.

Jim and I are regrouping and trying to decided what we can do to best help them get it all done and keep the other girls where they need to be, when they need to be there, etc.  Our goal is to produce as much normalcy for them as possible. Tomorrow we are going to try me at the hospital by 8:00 am so Jen can come home and shower, etc. I'll stay all day if Jen needs that. Jim will get the girls fed and off to school. Then we will see what Jen needs us to do and what she herself needs to do to keep everything running like a spinning top. Four kids and four adults should work out OK, right?  Six adults would be better though! LOL!

Get Well Soon, Baby Girl! 

Rhapsody In Pink~Hazie's Beautiful Song

Hazel is singing a happy tune this morning again.  Even though she is having her PICC line bandage changed right now and it is not pleasant, she is so good.  Not a whimper out of her and she is brave, really so brave.  Everything she does is a teaching moment for those around her.  They are constantly in here doing this and that to her.  She told us this morning she did not sleep all night.  Lowell who stayed with her confirmed that.

Her numbers are looking better but her white count is still high indicating to the infectious disease team that the infection is not resolving as quickly as they would like.  Another of the markers for the infection is slightly elevating. They are on a wait and see mode right now because they can fluctuate but if it is consistently going up they they will have to come up with something new. Right now they are ok with this place she is in.

Ironically on Facebook today they had one of my "memories" from exactly two years ago.  It was Hazie's first good day after her Veptr (Vertical Expandable Titanium Rib) back surgery in 2014.

Hazie was 7 in these photos.

The bacon and apples

are a common sight on her trays.

I have been bringing her a honey crisp apple daily

this time and it is usually the first thing she eats.

I thought you might like to see these sweet photos 

of Hazie when she is not in her hospital gear.

Are these precious shoes not every little girl's dream?

Taken a few weeks ago by Chloe.

So Hazie has had another good day under her belt and what a blessing. This hospital really is the best, the very best for little ones. They have a lot for the families as well.  They had a Sacrament Meeting for the families here at 1:00.  It was short.  Only about a 30 minute service but it was power packed with comfort for these special kids and their families. Jim and Julia and I enjoyed it very much and felt uplifted because of it.  Check back tomorrow!  Until then, Happy Sabbath to you.  

Love, Hazel and Co.

We're In The Pink In SLC!

One week ago Hazel was brought to the ER by her Dad.  She had two very worried parents!  Hazel has had a very traumatic week but today she is finally back to us.  The prayer this morning was that she would come back to us as her bright, cheerful, angelic, funny self.  At this point I can say we have been quite concerned about that.  But overnight she turned a big corner and she is chatty today and funny and we are all beside ourselves with joy.

Jen tried to take a smiling photo.

She blinked every time but this one!

My phone rang this morning and my call was coming from Jim's phone.  When I said "Hello," I heard the thing we have been waiting for, "Hi Gramma it's me, Hazel!"  Such sweet music to my ears, it turned on the waterworks in my eyes.  Later Jim told me the same thing happened to him and that is why he had her call me so we could all share in the moment.    Uncle Chris came up to see her this morning and he showed her a funny video that actually made her laugh out loud.  Our girl is back. She is recovering.  This terrible spinal meningitis knocked her out, but not for the count.  Best of all is it didn't steal anything from her.   Or from us.

Hazie and me doing her Pinterest boards together.

This would not and could have happened yesterday.

We are so grateful.  Thanksgiving will pack extra meaning for us all this year.  The aftermath of trauma and adversity is gratitude and a refocus of what matters most.  For me that is God who loves us and hears our prayers, a family and friends that support and loves us and our hearts filled with gratitude in all things.  No one likes adversity but it surely is a big part of how we learn in mortality.

Each day we are grateful and know that she is still not free and clear of what has happened here.  The roller coaster is still nearby and running, but we feel the highest bump is over. They are still watching her numbers and her infection.  Right now they are giving her a two hour IV dose of magnesium and we have to watch her breathing and her heart rate on the monitor as it can slow both of them down both.  So you see what I mean?  She's not in the clear but she is back and that is enough and then some.  This is not an infection that clears up and normal life resumes in a flash.  Time...it's all about time and patience and waiting.  So until tomorrow!  Be safe and hug your kids and grandkids or someone else that you love.  B

Hazel is Progressing!

Pinterest

It's 10:30 am Friday morning here in Utah.  It is a beautiful autumn day.  The kind of day that makes staying in the hospital for many hours harder.  But for the kids...we will do it as long as they need us.  We wouldn't want it any other way. It feels like we have been here a couple of weeks but in reality we are just starting our third full day.  Seriously the hospital is like a giant vortex that just sucks all the oxygen, blood and energy right out of you.  One time I stayed in this hospital with Jen and Lowell for a month.  This time I am so happy to say it is going to be a lot shorter.

Hazie gets a new hairstyle! **

We like to evaluate Hazel's progress using the number system from 1 to 10.  She was just above 0 when we came on Tuesday.  Yesterday she was about a 3.5.  She was still pretty sleepy and for some reason, that we cannot figure out yet, she doesn't want to be touched.  This is very uncharacteristic of her.  Not even mom gets away with touching her without a protest.  We think she has some pain that she is not communicating.

Yesterday she was still quite sleepy and her "numbers" for all the things they are monitoring are like a complex mathematical problem they are trying to solve.  Some things are getting closer to normal than others.  We are waiting for everything to sync.  They think one of the things that is making her so sleepy is actually a kidney problem with an alkaline output.  Hazie has some kidney scaring and other issues.  So her body may still adjusting after her bladder reconstruction in mid-August.

The infection is going down but still there.  She is still clammy and sleepy. The shunt is still an issue too complicated to relate but things are looking up.  Last night she was tired. She has had constant people in her room poking and prodding and talking for hours on end.  I think she's tired from all the interruptions in her sleep.  Her overall improvement was good by night's end.  It makes us tired and we are not even sick.  It is a wonder that people can heal with all the things going on there.  

The rest of the girls are doing well.  They are marching to Grampa's drums like little soldiers and we've got their schedules for needed rides down pretty well.  Between two different schools, work and sports and after school activities at each of those schools, we are thrust back into memories of our own children's past. I've been back and forth to the hospital during the days and at night I'm the doing one on one time with each of the girls.  Piper and I have talked about writing, one of our shared passions  One night Chloe and I did Pinterest activities for a few hours.  Last night I laid on the bed with Julia and made weird faces on snap chat for a loooong time. Julia is so dang funny!   Sheesh!  I thought of your recent snapchat photo, Lanette!

So it is Friday and this is how it's going to go today.  Grampa and I are on hospital duty.  Laundry done, dinner in the crockpot.  All is in order at their home.  Only had two hiccups this morning.  A lost jacket and lost book of Chloe's.  Found the book and we think she left her jacket at Einstein's last night.  Jen's on that and then on her way to see an academic counselor at the high school regarding Piper's schedule. Then she is going to go home and have a moment's peace for the first time since last Friday.   I brought my laptop to the hospital to write this and catch up on other work. and Jim is on his phone taking care of Library printer issues and the Scouting For Food drive that is happening on the 19th.  He is the Counsel Chairman for four counties.  Fortunately he is just tying up loose ends and has been working on it since August.

Shortly they are going to move Hazie to a regular room and out of her PICU.  This is going to be a nice improvement and hopefully more restful for her.  She's still weak but the best thing about today is she's around a 5 on the scale of 1-10.  She is talking more, asking for things, etc.  We are pretty happy at the good changes.  In the regular room she can have all kinds of play therapy and animal visits and even music therapy.  All things to get her moving again.  

Right now she is not overly enthusiastic about any of that but she will be once they get it going.  They have not even mentioned or thought about her going home anytime soon as of now.  With no further issues Jen is hoping for next Wednesday or Thursday.  It is a wait and see game around here.  But it is looking better day by day and sometime even hourly!  Thank you for the love and support friends.

If you want to comment here on her blog and have any issues with publishing just leave a comment on Facebook or email it to me and I'll add it to the blog for you.

** Hazel has a new haircut.  Shaved right on top for a four inch incision where they worked on her shunt.  God bless this little girl.  May we all be extra appreciative of our good health every singe day.  And when we run up against a problem may we handle it with the grace and good cheer of this little person!  Family is the best thing ever.  And of course also friends that become family.

The First Update~ Hospitalized Nov 5, 2016

Pink Princess~Halloween 2016

Hazel was admitted to the hospital on Saturday afternoon as she was very listless and clammy and just plain sick.   Here is a recap that I wrote this morning.

When she was admitted she caused quite a stir.

This post is to catch people up that are just joining into this medical emergency for Hazie. 

Hazel has always had difficulty with her veins when it comes to IVs.  Of course that is always the first thing they do when you are admitted.  They had several teams come in and work on her before they got a vein that was good.  Because they are tiny and fragile veins they can collapse after just a few hours.  It was decided to surgically place a PICC line into a major vein so they could just inject medications without worries.  So that surgery was 3.5 hours because they had two big veins collapse before the third was successful.

She was getting weaker and weaker and they knew she had an infection but they couldn't find the origin of it.  Her white count was very high so they started her on a broad spectrum antibiotic.  But knowing the source is very important to making sure you have the right meds.  They ran scans and tests and finally found a nasty bacteria in her stomach fluids.  The had already diagnosed her with septic shock.  It was progressing quickly affecting her whole body.

Hazel has a shunt that goes from her cranium to her stomach.  The  shunt collects excess cranial fluid and carries it into her stomach through an internal tube.  Spinda Bifada kids often have hydrocephalus and have these shunts and she has had hers since she was an infant. They had to remove it on Monday (surgery #2) once they found the bacteria in her stomach. The shunt tube created the perfect access to her cranial and spinal fluids and fed the subsequent spinal meningitis.  They inserted a drainage tube and got some fluid and it looked good.  The problem was that she had already been on antibiotics so the fluid did not produce any cultures after time. In the meantime, she was displaying several symptoms of spinal meningitis so they are treating her for that.

Tuesday, November 8th was really a bad day.  Hazie was not waking up from the shunt surgery as she should have been.  We were frantically trying to get here and Jen and Lowell were with her.  She was still not responsive.  They couldn't wake her up. You can imagine that they were very worried with no response.  Jen decided to run and get the other girls and go and vote when the polls opened before dropping Piper and Chloe at their respective schools. While there, Lowell called Jen to come back quickly to the hospital.  Hazel had gotten worse.  They had put her on a respirator because her breathing was not right.  She was loaded with CO2 because she was not exhaling properly.  You cannot image how long that drive through the desert was for us when we learned of this. 

Still late into the night she was not doing well. But she had improved a little as the respirator helped her reduce her carbon dioxide level.  Lowell said on a scale of one to ten she was just above zero in the morning and at about 2 or 2+ when he left at dinner time.  At 2+ she could not talk or even keep her eyes open more than a few seconds.  Jen asked her to squeeze mom's hand but Hazel could only move her hand slightly with her eyes shut.  None of us will ever forget this 2016 Election Day experience.  There were more surprises than any of us bargained for surely.

This morning Jen called to tell us that things had improved!  We were so relieved.  She was so much better that they removed the respirator and she breathing on her own.  While being closely monitored she was struggling a little but doing well.  She would open her eyes when we talked to her and as we stayed awhile she kept getting better.  It was so fantastic to see.  The nurses in PICU and doctors kept coming in and by the time we left this afternoon Hazel was talking a lot more, responding appropriately and drinking water for the first time.  As if that were not enough they brought her some dollar-sized pancakes and she ate one!  Talk about night and day, it was a miracle to behold. 

She has a very long way to go and another big surgery now coming up to place another shunt in her cranium.  But she is progressing and anything better than yesterday is cause to rejoice.

Now I am going  to editorialize a little bit because you get to when it is your blog.  As we were about to leave, the PICU was having a shift change report right outside the sliding glass doors to Hazie's room. We got to listen to her updated report.  The attending physician was reporting the history of what was happening and the gravity of how she was until today.  She said something like, Hazel has made tremendous strides today but I am not sure why.  Well I know why.  It is because of all the ways in which you and we are praying for her, thinking good thoughts and sending her a lot of love.  So far today all is better and it is already dark so chalk this one up to being good.


I'll give a shorter report daily in the days ahead. Thank you for being such great family and friends. It has helped more than you know.  She is by no means out of the woods yet but progress is a delightful word at this point. BnJ

Eating Pancake