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Tuesday, November 22, 2016

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!
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!

Friday, November 18, 2016

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?  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 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.

Thursday, November 17, 2016

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.   

Wednesday, November 16, 2016

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!

Tuesday, November 15, 2016

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.

Monday, November 14, 2016

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!