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. 

The Road to Recovery: Day 1

So far, so good.  Day 1 post op was rough.  The little guy slept....he slept a lot.  Sleep is what his body needed after a 15 hour day of surgery and post-op care.  Daddy and I were running on nothing more than caffeine and a whole lot of Jesus. 

 

Jarrett was very swollen from the anesthesia and the fluids that were running through his IV.  He has a button for pain meds and he used it a lot yesterday.  From his drains being changed every few hours, to his breathing exercises and labs, it was a busy day monitoring Jarrett[s progress.

 

Later in the day we learned from his  nurse Jaclyn that both of his IV's were infiltrated and he had not been receiving his fluids or pain meds for about 2 hours.  This was the time we also learned his fever was now over 101.3.  He was so full of fluids that finding a vein for the new IV was nearly impossible.  Thank God this is CHOP and they rushed in the ultrasound machine and found some great veins and got 2 new IV's in very quickly. 

 

 

The highlight of Jarrett's day was the rush of deliveries of balloons, gifts and various stuffy friends.  From the bottom of our hearts we thank you whomever sent gifts and meal vouchers to us. The meal vouchers are amazing and allow us to eat a well balanced meal without having to leave the room.  They are such a blessing!!

 

 

Yesterday was tough, I cannot sugar coat it.  Seeing my baby like this has been hard.  The joy comes from knowing that when this is all said and done and he has recovered, his life will greatly improve and he will have more independence for his personal care needs.   We keep telling him and ourselves this situation is temporary and only joy will come when this part is over. 

 

 

A big highlight of yesterday was his nurse, Jaclyn.  She is smart, funny, kind and most of all loving.  God knew Jarrett needed her and He sent her to him.  She caught the IV issues and made the call for help.  She advocates for her patients and keeps J and I involved with everything.  I could not be more thankful for her. 

 

 

We all got some good sleep last night.  Well, Jason and I did.  Jarrett was up watching TV and chatting with his nurse Leo most of the night.  They chatted about superheroes and watched Back to the Future.  Jarrett recited his most favorite lines. 

 

Keep praying and thank you for the love and support.



A Journey to Independence

The last 48 hours have been busy to say the least.  From late admissions, to the bowel prep, let's just say sleep has been little, but poop has been plenty.  My SB peeps will understand this dilemma. 

A little pre-admission snack en route to CHOP...a chocolate frosted donut made the little guy very happy.  Little did he know that was his last solid food for many, many days.

We finally checked in on Tuesday January 24 at around 2:45 p.m.  A little mix up in admissions caused a late check-in.  Once the paperwork was settled, we headed up to his room at 4 South 14.  We met his awesome nurse Brielle  wristbands were put on and away we went.  It was IV time which means hot packs to plump up his sleepy veins.

 

 

Next was to get dressed in some lovely hospital grade gear and start drinking to begin the bowel prep.  This is by far the worst part.  He had to drink 8 oz. every 10 minutes.  One would like to think they would flavor this for kids, but no.  It was awful.  Jarrett said many times it tasted like stinky feet.  He powered through and drank 3/4 of a gallon of this by midnight.  The only way to describe what takes place after drinking as disgusting.  He had to drink till how bowels were as clear as water.  We did not achieve this until close to 3 a.m.  It was the crappiest night ever....literally.

 

 

 

For anyone who has ever stayed at a hospital, there is no sleeping.  People are in and out all hours poking and prodding, so there was little sleep had by Jarrett or myself.  Surgery was scheduled for 7 a.m.  We had our wake up visit from urology around 5:30 a.m.  Jarrett had a delivery from his brother and we snapped an early morning selfie with Mommy and some cuddles with Daddy as we headed down to pre-op.  Thumbs up is always his way of saying he is ready for what lies ahead.

 

Surgery lasted 10 hours.  Daddy and I had hourly updates and a very long day trying to stay busy while we waited for our boy to return to our loving arms.  Dr. Zderic came out at about 7:30 p.m. to bring Jaguar to us.  Apparently, Jaguar was having some issues and required the same surgery as Jarrett.  For anyone that does not know. Jaguar is the little mans favorite stuffed animal and he goes everywhere Jarrett is permitted to take him.  Thankfully CHOP allowed Jaguar in the OR. One of the many reasons we love and trust this place.  HOPE truly does live here.

 





23 and Counting....

Happy New Year!!!  2017 is here and our little family is excited, nervous, optimistic and unsure.  So many emotions as we get ready for January 25th.  What is happening January 25th you ask?? Jarrett will undergo a surgery called the Mitrofonoff.  Basically it is a bladder augmentation (making his bladder bigger) and having a tunnel (using his appendix tissue) placed inside his belly button that will connect to his bladder so he can self cath.  Here is a link to explain it better:  Mitrofonoff Procedure

Jarrett is fully aware of his procedure and what it is for.  He made this decision on his own over the last year to have this surgery after many, many tests to ensure it would be perfect for our boys as well as many  appointments with his urologist Dr. Zderic at CHOP to discuss.  This procedure will give him even more independence and eliminate his risk of infections for UTI's which has been plaguing his little life lately.  The biggest benefit will be to not have to wear diapers or pull-ups anymore.  He is over the moon excited about that aspect.  More than anything, he just wants to wear underwear like everyone else.  That is truly the only aspect of Spina Bifida that bothers him.

Many keep asking us what we need during this time.  Honestly, we do not know because this is new to us.  What we do know is that Jarrett and myself (Kerri) will be in the hospital for a minimum of 7 days. His recovery after release from CHOP will be a minimum of 4 weeks and maximum (depending on how he heals) 8 weeks.  Jason will be off from work and around to help with Tyler to keep his life as normal as possible while Jarrett is at the hospital.  We plan to tag team back and forth to ensure I am able to get some rest because the recovery will be long and hard for Jarrett and myself and so I get to have some time with Tyler.  Once we come home, it will be the boys and I alone as Jason has to go back to work.

What we really need is for prayers.  Prayers for the surgeon Dr. Zderic so this procedure is perfect and has no complications as God guides his hands to help our son.   Prayers for strength for our family and especially Jarrett.  This surgery is 12 hours long and the recovery is hard.  We need prayers of endurance and peace as well as the ability to find God's blessings through this next part of our SB journey.

When his trial is over and little man is all better, he will be wearing underwear!!! This will be a huge TTSB (take that Spina Bifida) life changing moment.  I will do my best to capture many moments, good and bad, throughout the process.  Not only for us, but for other families who choose to take this road for their little SB warrior.  I made the choice when Jarrett was chosen by God to be my child that I would do all that I could to pay it forward by actions, advice and experience.  What better way to show Gods glory than to share it. 

I will post updates via this blog and Facebook throughout.  Keep us in your prayers.