Tuesday, September 11, 2018

September 11

Unfortunately, September ended up being more "exciting" than what we wanted it to be.  Besides the end of our Mimi and Pop-Pop visit and the first day of school, we also had our first (and hopefully only!) bout of pneumonia, bad enough that we had to move into the hospital for over a week.  Thankfully Little Buddy is doing better now, but oh what a ride!

     


     

Little Buddy had to complete a recipe for his summer reading chart, so we he made Mimi and Pop-Pop some chocolate pudding!  It was a success and he really enjoyed it!




Got to get our Chuy's lunches in before school starts!



     


     

Fun at Kangas before school starts!




      

School shoes ready and meet the teacher success... we are ready for another school year!



      

Morning of the last day of freedom!  Someone is going to miss her big brother when school starts!



          

Last night...tomorrow we have a 3rd grader!



        

Third grade, here he comes!!!   




My heart goes into my throat every time he leaves me.  Blessed for his teachers and paras that love and care for him.




     

And then he came home all smiles, after a great day!




Loves school so much, he waits devoutly for the bus to come get him!



So we thought the school year was starting off well, but it quickly took a turn.  Little Buddy was sent home the second week with a cough and a low-grade fever.  He started acting very lethargic, and the cough and fever would come and would go.  It was all very puzzling.


     

Tired boy!



We went to the pediatrician, but she didn't find anything wrong with him.  It seemed to be just a cold virus that would have to pass on its own with rest and fluids.  Little did we know...



      

      

     

It was so weird.  He would act tired, but he would still eat (normally, when he is sick, he won't eat).  We'd no sooner think that he was back to normal and send him to school then his fever would come back and he'd get sent home again.  We'd still get lots of smiles.  We let him sleep as much as he wanted and worried that maybe it was something to do with his Sanfilippo.




Little Sister checking up on Big Brother.


     

We would literally go from sickly to energetic multiple times throughout the day.


We were really hoping that lots of rest over the Labor Day weekend would help him kick whatever was bothering him.




 

Labor Day fun with Aunt S and L!


Unfortunately, that was not the case.  He made it through a half day of school on Tuesday, but was sent home almost as soon as he got off the bus on Wednesday morning for fever and cough.  With this "cold" having gone on a week, we went back to the pediatrician.  


The sick kid is all smiles leaving school...seriously, kid, what's going on with you?




Pediatrician, take two.


Um, it turns out, an awful lot.  The pediatrician still couldn't find anything wrong with him, but she sent us for a precautionary x-rays to make sure he hadn't aspirated anything.  Turns out, his right lung was significantly abnormal.  This handsome, smiley guy?  Has a severe case of pneumonia.  With an empyema.  Really bad news.



Just chilling out in the ER.  With one functioning lung.  And no real symptoms.




Taking a rest.  Poor guy.





Port accessed and still smiling and singing.  I can't believe at this point we were talking about chest tubes.  It was so surreal.  And Daddy was out of town and hurrying to get back to us.  How could this little boy be so sick?




All moved into the ER.




I hate all the poking and prodding he has to go through. 




Sleeping again.  Poor guy is up and down all day.





CT and X-rays confirm, our boy is in bad shape.




We were admitted and sent to the PICU.  I'm still in shock that our singing, smiling boy actually had bacterial pneumonia. 




Finally able to have some juice.  Poor guy.  Chest tube will go in soon.




Trying to get some rest before his procedure.




Chest tube is in and the infection is draining already.





The best part about finally getting his procedure done was that he could finally eat real food.  Pancakes are life!


And so began our 8 day stay at the hospital.  After the chest tube insertion went well, we were able to leave PICU and be moved into a regular room in acute care.  We moved right in and got to decorating.



Nice and homey in our hospital room!



Our days were pretty repetitive and trying to keep Little Buddy occupied in a hospital room is no easy task.  

     


Tables, coloring, puzzles, and sadly, a lot of TV, took up a good part of our day.



     

     

Eating was also a big and important part of the day!



           

     

I would say the favorite part of his day, though, was when he was allowed to take a walk.  We did many laps of the hospital hallways and he loved finding his favorite tiger picture each time.



Sleep, when we could get it, was Momma and Daddy's favorite part of the day.  It was tough with the lights and the noises and the constant vitals checks, but we managed what we could.




It was a stressful time for any couple, but we managed as best we could.  We were just thankful that our little guy was responding well to treatment.



We also had a great many friends stop by to visit, which really helped our spirits.


L came with Uncle M!



     


Sweet little sister stayed with friends throughout the ordeal, but we were always happy when she came to visit so we could all be together.




Ms. D helped take great care of Little Sister for us!





Little Buddy couldn't make the first day of Run Club, so Coach J came by to give him his marks for all the laps he'd walked in the hospital.



This was not an easy time in our lives.  There were a multitude of complications, such as when his chest tube fell out or when his port needle moved.


Chest tube that should be IN his chest.



But we couldn't be more grateful that everything turned out ok and that our sweet boy is happy and healthy again.  We were blessed by good treatment and great friends.


Hugging his sloth from Ms. S!



     


Every sweet smile was a blessing!




We promise he likes our kisses!



And then the moment happened...we were finally released!  We have a lot to do during the next month to keep him healthy, but we can't wait to be home in our own beds!


FREEDOM!




Height and Weight
He's 54 inches and down to 68 pounds.  We definitely think the pneumonia and hospital stay contributed to his weight loss, so hopefully we can get his weight back up soon!


Personality
I'm still just in awe of his strength and bravery.  To be so happy and and smiling when he felt so terrible.  He's really an amazing kid.


Developmental Changes
Surprisingly, while in the hospital and dealing with the pneumonia, his language was great!  Hoping it stays that way.  Very talkative and lots of words.  Also, we've noticed his self-feeding and other skills improving now that the pneumonia has been treated, so hopefully that was the culprit.

      

Self-feeding Wheaties!  That's a big deal!





Bless him, he does still try to potty.  Sadly, he has to try to fit himself on the baby potty because that's where we have the most success!



Fun Tidbits
We always enjoy connecting with our Sanfilippo family, virtually or in person!


Facetiming with our buddy, J!




Blessed to meet K and her family in person!  They live near to us.  What a beautiful family!


Hoping for continued recovery and improvement next month (and less excitement)!

Until then, 

LBM

Little Buddy's Momma