Here We Go Again.....

We have had a quiet 3 years since winning our fight for accessibility in our school district. Today I met with the IEP team to have some questions answered. I asked 3 questions on June 21st and again via email 3 weeks ago...

 

1. Will Jarrett have his same 1:1 assistant that he has had for the last 2 years?

 

2. Has the transportation and transportation modifications been updated and added to the IEP? If not, please do so and I will sign off to amend the IEP without a meeting.

 

3. Who will my child's teachers be?

I have asked these questions every year for 3 years and received immediate answers. Well, until this year. I normally get the answers by the last day of school. I prefer to be proactive rather than reactive in case there needs to be training or meetings need to be scheduled. 3 steps ahead is where I am comfortable with Jarrett's care. Anyone that knows me knows I am an open book and very thorough. This year I asked and never received a response. I became concerned 3 weeks ago when my questions had not been answered from June 21st. I received an email on Monday stating we needed to attend a meeting to get the answers and the meeting was scheduled for 10:30 Friday morning.

I never get comfortable with meetings because I never know when the proverbial rug will be pulled from beneath my special needs child's feet. Today, that rug was pulled from beneath his feet and thrown at us without them even blinking. The district administration has made the decision to assign Jarrett a new 1:1 assistant. The fact that they have decided to tell me about this 2 weeks before school starts which literally leaves 1 day to train her.  They had to tell me because I asked the question. What if I never asked??  When will this woman be trained? What does she know about him? What are her qualifications?  My son would have gotten on the bus the first day of school and arrived at school to a stranger who will ultimately be responsible for his personallcare including help with cathing. Nope. Not on my watch. My child went through a huge surgery 6 month ago and has had amazing support from his aide. She and I both worked closely to give Jarrett as much independence as possible. We had a great friendship and respect for each other.

The district administration tried giving me some bologna about how kids cannot get too attached to caregivers because they need to work with different people throughout their school career. Anyone that knows Jarrett, knows how well adjusted and full of life he is. His care involves personal care for toileting. I do not know how many feel, but I would not want to show my stuff in my shorts to everyone.  That is private and sensitive and deserves dignity. From time to time he has #2 accidents and it is traumatic for him because he feels embarrassed.  His former aide did such a wonderful job of keeping this private and coddled him when he got upset. 

 

A new aide means we now have to train someone all over again.  She needs to learn all of his needs from assistive devices such as the walker and leg braces, toileting regimen, evacuation and lock down drill procedures, shunt failure warning signs, etc.  At today's meeting this person did not even say hello or acknowledge Jarrett.  The district has left us with 1 day to train this person and that day is the Friday before Labor Day.  That is a day we as a family had planned to be out of town. 

 

As an advocate I have always told families, you the parent are an equal participating member of the IEP team.  Today I learned that we are really not.  The NJ AC 6a Chapter 14 code says we are, but that does not seem to matter to high dollar earning administrators.  We are merely attendees of the meetings while they all make decisions for our kids that they barely know and we are left to accept their terms or fight the best we can.  Today, tomorrow and always I will fight for my boy.  Get ready Hamilton, you rattled the wrong Momma Bear's cage again.

Baseball, Baseball, Baseball....Oh did I Say Baseball?

We are now officially 6 months post Mitrofonoff surgery.  I cannot begin to explain how amazing this outcome is.  We had a few minor bumps in the road, but everything has gone really well.  Jarrett decided himself at 7 years old this was what he wanted.  He never showed any fear, even as they wheeled him into the OR without Daddy and I he smiled and gave his usual thumbs up.  The best part, no more pull ups.  Jarrett has tons and tons of underwear.  Truly something we are so thankful for....independence.  Jarrett is fully independent for his bathroom needs.  Praise God.

Each day he grew stronger and worked hard to regain his mobility.  It did not take this kid long to bounce back to his 400% level of activity.  His one stipulation with the surgery was that he had to be recovered in time for baseball season.  Well, he did it.  Our boy ran onto the field in mid April for Miracle League of Mercer County Opening Day and had a blast.  He truly is Iron Man.

Just playing baseball with pitcher Cale Coshow of the Trenton Thunder.

Little man racing towards homeplate.

 

Jarrett Was Thunder Struck

Friday will go down in Kane Family history as the greatest day of Jarrett's life.  A few weeks back, I saw the Trenton Thunder offered what was called a "Boomer-Gram" for Valentine's Day.  Of course,  I immediately reached out and arranged for it to surprise Jarrett during his home recovery from surgery.

I honestly do not know who was more excited, me or .....well....ME!    The day arrived.  I was trying hard to contain myself,  but this secret was eating me alive.  1 p.m. could not come soon enough.  The highlight was Jason finished with work by noon, so he would be home to witness the surprise.

 

The smile on Jarrett's face was priceless.  He heard the knock at the door and when we opened it, Boomer came right on inside.  Jarrett's jaw hung open in shock.  Following behind Boomer was Mr. Vince, who is Jarrett's favorite office staff member at Arm and Hammer Park, as well as Mr. Matt who organizes the Boomer's Kids Club (the boys were members last year and are members again this year). 

 

The Trenton Thunder staff and players will always be #1.  Thanks for making one little fan very,  very happy!!

 

Post Op Life at Home

We are now 3 weeks post op.  Seriously??  3 weeks have passed already.  I am still in shock.  Each day gets easier and the little man is healing well.  Once we got into a routine, everything fell into place. 

 

Day by day Jarrett becomes more of his former self and returns to doing the things he loves. His first few days were spent enjoying some new toys and games that friends, neighbors and families dropped off for him. Thank you to everyone for your kindness and love for our boy.  The best part were the many meals friends and even strangers dropped off to our family.  It was a huge help to me as I navigated this unknown territory.  We are blessed.

 

 

His silliness has returned too!

 

 

Last Wednesday the weather was beautiful and 63 degrees.  Jarrett was up and walking and was able to spend some time outside.  The fresh air did him good.  His spirits were lifted and he felt well enough to shoot some bad guys from the porch with his nerf gun.

 

 

His friends from school sent home a book of well wishes for him.  It made his day to know he is loved and missed by so many of his friends.  They even knew to include his favorite team and sport on the cover.

 

 

Each day Jarrett gets stronger and stronger.  Keep praying.  God is so good and He continues to bless us.

 





Recovery Update...

So sorry I have not updated sooner.  The remainder of our hospital stay was long and many days were hard.  Jarrett spiked an odd fever and that held up our discharge till the doctors could rule everything out.  Blood tests came back normal, but a weird rash appeared.  The doctors chalked it up to a latex reaction and treated it with Benadryl and cold compresses.  The fever subsided on its own several hours after it appeared.  Praise God there was no infection or surgical complication.

 

Shortly after he was allowed clear liquids.  He had some chicken broth and ginger ale,  but the ice pops were his favorite and obvious go to choice.  Blue Raspberry was his favorite and yes I allowed him to eat one for breakfast.  After all he had been through, he earned it.

 

 

He was a very complaint patient and as ordered he worked on his breathing exercise with, as he so amusingly called it, his "air tank."  This kid used this little machine to challenge himself.  He first started out getting to 500, then he quickly upped the challenge to 1,000.  By the end of day one he was having contests with me to see who could reach 1500.

 

 

 One of the highlight of our stay was the Child Life Department.  They came in on our 5th day and asked what Jarrett would like to do.  Of course he said Legos.  He loves Legos, especially superhero Legos.  Leslie came into the room with of all things, his favorite, but a brand new Batman Lego set.  He worked diligently to complete it.  He needed some help, but did as much as he could.  He spent a good 4 hours sitting up in a chair and working his little fingers hard to complete it.

 



 

The next few days were filled with lots of work, from sitting up, to the constant drain changes.  The poop situation was the hardest part to deal with.  It would happen at any hour and no warning.  Trying to get him back on a schedule is still plaguing us. 

 

The last 2 days of our stay brought a few unexpected tests to check his shunt.  Being that the tubing was moved during surgery, his urology team ordered an x-ray and ultrasound to make sure all systems were a go.  This meant Jarrett would be unhooked from his IV and we could get out of the room.  We were thrilled to use his wheelchair and escape for a bit.  He loved sitting in it and especially being free to wander about.  It also allowed him to get close to the PlayStation so he could get his gaming on.  He has some pretty big smiles on his little face as he played.

 

 

 

Our last day in the hospital was Tuesday, January 31st.  From the fever to the testing we had lots of ground to cover in order to be released.  PT came in first thing in the morning and Jarrett was nervous, but ready to work.  He fought me hard, so I had to get creative.  I bet Jarrett $20 he could not walk at all.  When I said that, a part of me inside broke & I cringed because I never once believed he was incapable of doing it.   Sometimes Jarrett needs to have the ante upped for him to comply.  It is just apart of his competitive spirit and one part of him Jason and I know will catch his attention.  I had to leave the room, so I headed t the bathroom to take a shower.  As I began to dry my hair I heard a knock on the bathroom door.  I asked who it was and tiny, weary voice said, "It's me Mommy."  As I opened the door there he was, red faced, exhausted and determined.  I smiled and tears poured from my eyes.  I was beaming with pride for my little fighter.  He then pushed me away and said, " I love you too, but where's my 20 bucks?"  Typical Jarrett.  He then looked at me and said, "Watch this and you do not have to pay me to do this.  This is a freebie Momma."  This little guy walked over to the hospital room door, slow and steady, then opened the door and walked into the hallway.  He was so proud and this Mommy started jumping up and down with joy. 

 

 

The docs came in, saw his progress, did another set of vitals and we were cleared for release.  Now Jarrett wanted out of his hospital wear and into some superhero gear.  Good thing Mommy came prepared.  He suited up and we were set. 

 

 



 We donated some of his balloons to a few patients on our floor and a few....Jarrett requested I do some Chipmunk voices with.  I inhaled a little helium and the giggles that came from Jarrett were priceless.  The remainder of the balloons we hooked to wheelchair.  He sort of looked like Mr. Fredrickson fro Up.  We waited for Daddy and Tyler to pick us up and we were off.  Peace out CHOP.

 



 



Post Op Day 3

Today the road to recovery began by getting back some mobility.  The hardest part for Jarrett is that his fear is bigger than he is.  He fears pain, so he refuses to move.  Getting him up and out of bed has been a huge challenge.  We prayed a lot.  We asked God for strength and gave his fear to God so he could accomplish some mobility goals. This little man is tough and he did it.  He was up in a matter of minutes and walked 4 steps.  I could see the pain, but mostly determination in his face.  Nothing was going to stop him.

Once he was up he spent some time in a chair.  He spent about 3 hours in the chair and then began to get very sleepy.  By 6:30 pm it was time to get him to bed.  He was exhausted.  This was where our day of highs turned into a sleepless night full of aggravation and frustration.

The nursing shifts are 7 am to 7 pm.  Our amazing nurse Casey left at 7 pm and brought in the new nurse.  She seemed very inexperienced and had someone with her.  I learned shortly thereafter how inexperienced she really was.  It started with her waking him to simply introduce herself.  I explained to her how hard he worked during PT and he was pretty exhausted, so to please let him rest and to minimize interruptions.  Rest was truly key to his recovery.  She said she has a job to do, but okay.  Not less than 30 minutes later, she and another nurse come into the room, they turn on all the lights and begin talking to each other loudly. I was asleep on the cot off to the side of Jarrett's bed and watched as they chit chatted while moving his bed up and down to change him (he has 4 drains and he is pooping a lot).  They finished 20 minutes later, walked out the door, let the door slam all while leaving all the lights in the room on. I got up to turn everything off and tuck Jarrett in with his blanket that they never put back on him.

I let it go and tried to g back to sleep.  20 minutes later they came back in, turned on all the lights and proceeded to take his vital signs, which included his temp (they woke him to take it orally instead of under his arm), blood pressure & pulse.  They then finished, left the room while letting the door slam and again left the lights on.  Okay, just vital signs.  Maybe now they were done. 

15 minutes later one of them, not sure who walked back into the room, turned the lights on again and went over to the IV machine.  Put his dose of medicine in, beeping sounds a plenty came from the machine, left the room, lights left on again and slammed the door.  Each time they left the room, I got up to tuck Jarrett back in and turn off the lights.   10 minutes later IV machine beeps, meds are done.  I silence it, get back into bed and try for the 4th time to go back to sleep. 5 minutes later beeping again.  This time I let it beep. For 30 minutes this machine beeped away all the while keeping us awake.  She comes in, turns on all the lights, resets the machine and walks out slamming the door.  Again, lights left on.

This went on all  night about every hour and a half till at 5 am I had enough.  Every 1 1/2 hours one of them was coming in to do something.  I sprung out of bed and said enough.  We have had enough.  I briefly explained what Jarrett and I had endured and the response was smug and snotty, " I am just doing my job."  I then stated, "Well you are not doing it well because you could care less about this child and what he has endured.  Please leave.  He needs some rest."  10 minutes later the other one went to come in and I sprung up and told her, "No, please let him rest."  She began to argue stating he needed to have his vitals taken and I told her it needed to wait. By this time Jarrett was crying and sobbing and the more he sobbed, the more he hurt and then began to poop.  The nurse said, "Now he needs to be changed," and came walking towards him.  I said I would handle it as her presence was upsetting him and now angering me.  As politely as I could, I told her to please leave the room.

The morning nurse came in, we had Casey again (YIPPEE!!!) and we both explained about our sleepless night.  She was more than understanding and did her best to put a DO NOT DISTURB on the door so my boy could rest.  Once he rested he was much better.  It was hard because his hard work was set back the next day when PT came because he was totally wiped out.  Pray we get out of here soon.  We are both homesick and desperately want to get back to reality.

The Road to Recovery: Day 2

We are 2 days post op.  Things are looking up.  Jarrett's pain is under control for the most part.  He had a new nurse at night named Leo so he was up most of the night chatting and joking with him so Jarrett was very, very tired.  I think he enjoyed having a guy to joke around with.  The highlight of the day was having the NG tube removed.  Jarrett hated having that thing taped to his nose.

The rest of the day was spent working on breathing exercises to help his lungs.  The docs think that is where the fever was coming from.  A portable chest x-ray was ordered and we were in awe when it arrived looking just like a fire truck.   Thankfully the chest x-ray was normal, but it did show his lungs were high in his chest.  That was caused from him being in bed for a few days.

The highlight of our day was getting to see Tyler.  That is one part that makes this so hard, being separated.  Tyler was in great hands with my parents, but it was apparent part of us was missing.  Tyler jumped right into his role as big bro and began loving on his brother and checking to see if he is okay.  A few hugs and kisses and they were back to playing, joking and playing with some toys.

Tomorrow Daddy heads home to relieve Grandma and Poppa G and Jarrett and I will be staying at CHOP for a few more days.