Zachary - Graphic Discussion from Dad -- Monday, March 10, 2008

It never fails, as I plan to leave town, problems arise.

A little background--the last 2 weeks we have been to the emergency room twice.  

• Zachary took his first unassisted steps and then proceeded to catapult himself out of his crib and land on his head.  (Yes, we lowered the bed)  After being checked out, no issues.  
• Last Sunday, his chest catheter snapped in two.  Luckily they we able to repair it.  
• He has been fighting a skin staph infection with every 8 hours antibiotics into the catheter.  
• Late last week, the staph entered his blood stream.  More antibiotics.  He wakes up every hour screaming from some kind of pain.  That started last monday.  

He has had a low grade fever since Thursday and on Saturday (4:30 a.m.) his chest catheter came out of his body.  He was free of tubes for the first time in his life. We put him in the bathtub (1st time) and he was crawling everywhere.

But the fun had to come to an end and the nurses showed up to put a line in his arm to be able to keep him hydrated.  This insertion took 2 1/2 hours of screaming and crying.  He could not be on his normal nutrition so they had fluids running.  He was drinking ferociously to try to hydrate his body and the wet diapers ensued.  The doctors are happy if he takes in 16 oz of fluid a day.  He drank 32 oz yesterday.  

Sun at 12:30 p.m., his vein in his arm clotted off and the fluids went into the cells in the arm making it puff up.  Had to remove the IV and call the nurses again to reinsert.  They took another 2 hours and searched his body to finally find a good vein in his hand (ouch!).  IV finally stayed in overnight and he slept a little bit out of sheer exhaustion.  

Onto the hospital today for ultrasound line studies.  Need to determine where good veins are for another catheter placement in the chest.  

Final resolution is to insert a PIC line into his arm.  Pic line is deeper than a normal IV and will support his nutrition and fats without burning his veins.  A Pic line is inserted deeper into the arm under anesthesia.  Doctors had planned to have surgery on Tuesday but they want to use a PIC line for a week or two until they can heal all of the infections and then schedule surgery later to input the new chest catheter.  

Needless to say, lack of sleep and exhaustion are taking its toll on mom and dad as well.

Here we go again! 

Friday we got a call confirming that there is Staph in Zachary’s blood.  Amazing, this child should be running a fever, acting very sick but no, he is crawling around like a madman.

6 am I hear him calling from his crib.  We get up, eat breakfast, play with some toys in the family room. 

8:30 am and the Omegaven pump beeps.  Time to unhook.  When Zachary is on the Omegaven the pump must be pole mounted.  12 hours every evening we wheel the pole around the house. 

Zachary is sitting in his room while I go to wash my hands to begin the unhooking process.  Next thing I know, Zachary crawls around the corner to see what I am doing.  It took me second to realize, NO POLE.  For some crazy reason I first thought that he unhooked himself.  No, come to my senses, I scoop him up, walk into his room and there is the pole, lines on the floor leaking fluid.  I open Zachary’s PJ’s and blood is dripping out of the line that is broke.  I grab the scissor clamps off of his fridge (the scissor clamps that we were told to keep close for such a scenario, the scissor clamps that we have never had to use even though we were given them on Oct 25, 2006) and clamp the line. 

I take Zachary into Gary, who was going to sleep in.  Well, change of plans.  We call Dr. Brady and off we go to the ER.  They are going to admit us and Dr. Coln is waiting for us.  He is going to try to repair Zachary’s line. 

We get to the hospital to find out that they are out of broviac repair kits (note to self, get some on order to keep at home in case this happens in the future) and a courier is bringing them from Cardinal Glennon Children's Hospital.  The hope is once we repair the line it will still flush.  With such a small line it clots off quickly.  It will be about 2 ½ hours before we will be able to get fluid into the line to see if it may work.

The nurses on the 7th floor PEDS at St. Johns recognize us.  It has been about 5 months since our last in patient stay.  They are so sweet, they try to calm Zachary down but he wants nothing to do with them.  He is protesting his HUGS tag on his leg so they de-activate it and cut it off.  That seems to make him happy.

Broviac repair is a success.  Zachary SCREAMS through the entire process.  2 nurses, mom and Dr. Coln to get this done.  It was pretty interesting.  They take a new broviac, and it is like inserting one hose into another.  Then they use glue around the seam.  A sheath is then put over the seam and glue is squirted down in the sheath and on both ends.  Heparin goes though the line.  Good news!  Now we wait for 4 hours to make sure there is no leaking of the line.  We need to wait for the glue to completely dry before we can try to flush the line.

Zachary is so worn out by this time that he falls asleep on me.  We take a little nap while Daddy goes home to get some stuff done.  Of course, this happens right before he is to go to NY.

We sleep, we play, we talk to the nurses, we go to the Ronald McDonald room to pass the time.  Dr. Brady stops by.  Zachary just loves her.  He plays with her for a few minutes while we discuss what is going on.  She says we can possibly go off TPN for 10 hours a day!!!  2 more hours off!!!!  We may start this on Monday.

 3:30 pm- THE LINE FLUSHES!  WE ARE OUTTA HERE!  Nurse Rhonda discharges us and off we go.   

2 Steps Forward, One Step Over the Crib Rail 

Pretty exciting day today.  Zachary had a great physical therapy session.  He crawled the steps for Susan.  That afternoon when I got home from work he was standing up all by himself.  Kind of wobbly but standing.  Then he did it.  TOOK 2 STEPS TOWARDS ME!  He was so pleased with himself.  He did it again for daddy later in the evening. 

8:00 pm, time for hook up.  We have had 2 mattresses in his bed because he lowest setting was so low…well, not anymore.  As I was spiking his TPN bag he was standing in his crib playing. I look over and he is in slow motion flipping over the top of the rail towards the floor.  I race to catch him but too late.  He landed on his head.  He is screaming, I do what I know I am not supposed to do, I pick him up.  Gary races into the room.  I run towards the car to head to the ER.  Gary is going to follow me after he gets Zachary’s IV’s ready.

On the way to the ER Zachary is still screaming in the back seat.  I am on the phone with the pediatrician and all of a sudden Zachary is silent.  The exchange tells me to hang up and dial 911. 

As I am on the phone with the dispatcher she tells me that Zachary may have a seizure.  Now I am really freaking out.  We are to meet the ambulance at the gas station by my house.  By the time the paramedics get there Zachary is starting to wake up.  As they open the door to the back seat (it is cold outside)  Zachary starts babbling to them and trying to share his pacifier.  They are asking me all sorts of questions, one of them being, “Is it close to his bedtime?”  I felt really stupid like they were trying to tell me he was sleeping because he was just tired.  Probably the case but with all we have been through I didn’t want to chance anything.  We were still going to the ER.  I ended up driving him, by this time Gary was at the gas station so we drove together.  Zachary checked out fine so back home we went. Home and in bed by 10:30.

 Gotta love the Pediatric ER docs at St. Johns Mercy. 

Infectious Disease – Dr. Chacko

 Get a call from Dr. Brady, his line swab is positive for staph.  She wants us to see Dr. Chacko.  Only problem is Dr. Chacko only sees patients on Wednesday’s.  It is 2:00pm when I get the call.  I don’t want to wait a full week to see her.  I wrap up at work, race home to get Zachary and we are at Dr. Chacko’s office by 4:00. 

She tells us that we all have to wash with a special soap to lighten the amount of staph on our skin.  (Did you know that everyone has Staph at all times on their skin?)  She also says the dreaded word ANTIBIOTICS.  She can see the fear in my eyes when I beg her to give us 8 hour antibiotics instead of 6 hour antibiotics.  I then snap to my senses and say, whatever is best for Zachary we will do.  Luckily she suggests an IV push every 8 hour antibiotic.  I cannot even begin to explain how happy that makes me.  No more getting up every 6 hours to run a pump for 1 hour.  We now start on a 14 day, 6 am, 2 pm and 10 pm antibiotic.  This antibiotic does not have a separate pump; we just push it over 3 minutes!

Pumping Iron 

Today seemed like it was going to be like any other Monday.  Sterile dressing change, maybe a doctor visit, weekly blood draws.  In the Solomon household never say normal! Zachary’s nurse Alisa had her baby at 8:30 this morning.  Owen Charles.   We told Alisa we would try to come see her later today.  Zachary misses her so much.  Every time the door opens in the morning he waits to see Alisa and then a new nurse walks in.  He is NOT HAPPY. 

Over the last week our new nurse Keisha had made great strides to be Zachary’s new best buddy.  They sing, color and play with stickers. 

We have an iron infusion scheduled at Dr. Hanson office for 1:30 pm.  As we are packing up, I look out the back window.  There is Keisha’s car in the back yard.  It somehow rolled out of our driveway, down the hill and is now sitting by a small tree.  It is muddy and there is no way the car is going back up the steep hill.  Keisha is in panic mode, here she is, a new nurse at my house and her car is 4 wheeling without her.  She runs down to the car.  The only way out is through our neighbors back yard and up their driveway.  Luckily with minor damage to the lawns and her car, she is able to rescue her car!

Off to Dr. Hanson’s.  While we are drawing labs and changing his dressing we do a swab to test for staph since his line site is still looking a little icky.

Zachary tolerates the small iron test so we start the infusion.  While he is being infused we do arts and crafts, watch the Dr. Seuss, walk around the office…anything to pass the time, 4 hours before we get to go home. 

It’s going to be a long night  

Zachary has not been sleeping well.  He is on antibiotics every 6 hours for a staph infection around his line. 

I get home from work at 5:30 pm.  Time to hook Zachary up to his antibiotics.  Since the antibiotic pump has such a short leash and has to run over an hour, Zachary and I play in the hallway between his room and ours.  I can control his choices for escape!  We call Daddy to see when he is coming home, crawl into the bedroom and turn on and off the TV.  The button is at the PERFECT height for Zachary.

Here comes Sam, ½ a diaper in his mouth.  "SAMMIE" I scream.  He races in the other direction.  I scoop up Zachary to see what I know I don’t want to see.  Diaper pieces all over Zachary’s room.  When a diaper is shredded it contains these gel like crystals that absorb the urine and diarrhea.  ALL OVER ZACHARY’S FLOOR.  CRYSTALS!

I scream at Sam and then get the vacuum.  We have learned that a vacuum is the only way to clean up pee crystals. 

Room clean and time for Zachary to eat.  We go into the kitchen and I keep smelling poopy diaper.  I check Zachary and it is not him.  Guess who is prancing through the kitchen right now.  SAM! Not only did he eat the diaper, he rolled in it to get that lovely scent all over his body. 

We call Daddy to see if he would like to hook Zachary up when he gets home or if he would like to bathe Sam.  He hooks, I bathe.

Zachary falls asleep and so do we.  

2 am.  I hear the dog gagging.  I sit up, put my hand under his mouth and get a handful of thick barf. (Saved the comforter)  I empty my hand in the toilet, wash my hands and get back in bed…for 20 minutes…Zachary is calling.  He is covered in poop.  Change him, change his bed and we rock in the chair.  Thank goodness that chair is so comfy, we fall asleep.  5 am Zachary is fussy.  Time for antibiotics anyway so I get up to start that pump.  We go back to sleep for an hour, unhook the pump and then back to sleep again until 7 am. 

Off to work feeling like a Zombie.

Zachary has been very clingy the past few days, we could not figure him out until today...

The child has been trying to tell us that something is wrong with his line.  Late yesterday after he pulled off his sterile dressing, we could see a big lump right above his broviac.  Last time this happened it was a few days in the hospital (YUCK, especially during flu season) followed by heparin shots to thin the blood clot that had formed.  Ultimately we pulled the line after 4 weeks of IV antibiotics.  I hope that is not where we are headed with this.

Dr. Bell has performed 3 of the 9 surgeries that Zachary has had to date.  Couldn't say much about the lump, just wait for the blood cultures and start on the nasty IV antibiotics.  IV antibiotics usually lead to thrush in the mouth which is treated with a horrible tasting liquid that we have to swab over Zachary's tongue and cheeks.  Zachary protests loudly followed by a series of gags.

Our nurse from critical care met us at Dr. Bell's office since this was blood work day.  It took Jenny, Nickie and me to change the dressing and draw the blood.  I think we scared all of the other patients out of the place.  Zachary screamed at the top of his lungs.  Didn't help that it was a beautiful winter day of 70 degrees outside but 80 degrees inside the hospital. Everyone was sweating by the time we were done.

On a good note, Zachary has begun speech therapy.  Judy his therapist is awesome.  Today we learned thank you, open, need help and birdie in sign language.  Zachary even invented his own sign which we are still trying to figure out what it means.  He has been using the sign for More like a pro, it is for more books, more food, more play, more drink, more wash hair.  It makes such a difference that he can communicate with us in this way.   Every parent should have the opportunity to work with Physical, Occupational and Speech therapists when their children are young.  There is so much to learn that is not in the typical baby development books.  We are so lucky to have a great team working with us and Zachary.

Happy New Year

As we reflect back on the past year it seems to have flown by yet gone very slow.  People have said to me that they hope 2008 will be a much better year.  At first I agreed but the strides and accomplishments that Zachary made in 2007 were pretty remarkable.  We are so thankful for all of our friends, family and our employers for the support last year.  Even people we have never met have reached out to us in so many ways.  It is so wonderful to be loved like we are.  Starting the Omegaven in August was one of the highlights of the year.  Just a reminder, 0-0.3 is a normal direct bilirubin range.  Zachary was as high as 9.  As I type this he is at 0.7.  Normalizing his liver opens up a whole new world of opportunities for Zachary.  This allows him to continue to grow and allow the gut to try to adapt. 

Merry Christmas

Had a wonderful time at Grammy’s house.  Zachary and cousin Gracie played with all of the toys.  The both love the ornaments on the tree.  Zachary ate a piece of asparagus.  Beautiful green diapers about an hour later!  It is always interesting to see how long the food will stay in and what it looks like when it comes out.  Yes, I know, gross but that is common talk in our household now.  Dr. Brady is used to my Saturday night poop discussions.