Tuesday, July 16

We are home from the hospital

Although I've updated our family and friends,  and my extended social facebook friends.... I need to update you all! 

Tommy is home!

We were discharged from our local hospital after three days inpatient.  Although he is not 'out of the woods', Tommy is mending and getting stronger and more recovered everyday!  And doing that at home and in sunshine and with lots of love from a family of six.

Breathing treatments while he is awake during the day every three hours, antibiotics, our beloved probiotics, extra fluids and lots of love!

Our local hospital did well covering his basic medical needs.  I point that out, because we have not had a very good relationship and care when inpatient as a special needs pediatric patient in this hospital.   This visit, I even got a chance to talk to one of my favorite long term nurse on the floor (we talked into the wee hours of the morning about building up a community that cares for it's special care kids when they are sick) and she shared that leadership, not the nurses, feel special care peds patients are only a "necessary nuisance" to healthcare in general.  Obviously, caring for a child like Tommy is expensive.  And even though we have three forms of insurance, the hospital doesn't "make money".  The nurses have always been great, but without leadership funding and skilled staffing.... special care needs such as skilled hospitalists and speciality care inpatient peds.... nurses can only do so much to help us.  Which then Tommy cannot fully recover his health with only minimal pediatric inpatient care.  So after years of letters and meetings with Pediatric inpatient management within the hospital, we came again to an inpatient stay and were a wee bit worried.  But the care was fine.  It was actually pretty good. 

Here were some of my quick updates to facebook which I'm posting here for my friends across the nation and in other countries.  I'm always interested in hearing from all of you with ideas on pneumonia and hirschsprung's disease and the polysaccaride antibody deficiency and how all things "Tommy" might interact because some of your sweet kiddos have the same complexity.  I'm fairly well caught up on my emails again so if you send me information, thoughts, love... I'll finally be able to find it! 

Tommy was ill with a cough, no fever, that started with head-to-toe hives.... for two weeks.  The cough for two weeks, the hives were only two days, but the hives were the most remarkable case I have seen in my life.  The cough then spiked a fever in his body of 104 and a white blood cell count of over 20k.  A huge infection had started and his body was fighting with all he had.

When the fever started, I had already scheduled a 2pm peds ill child visit.  But quickly called our pediatrician triage and said I would be going to the ER instead, which they encouraged also.  He hadn't exactly struggled for breath up to that moment, which was 9am.

On the way to the hospital though.... it all unraveled. 

He was secured in his car seat, I was driving.... unfortunately I didn't think to call an aid car....and I didn't think to ask a neighbor to ride to the ER with us.  And he gasped, and coughed and tilted his head back....his hands grabbing at his car seat straps to try to breath.
His eyes rolled back in his head and he could breathe.  I could hear him gurggling.
I was driving almost 90mph down I5 toward our local hospital which is 10 mins on freeway from our home.
With a child that I didn't think was breathing anymore.
And I couldn't see him in my rearview mirror because he had slumped and pulled his blanket over his head
And I was screaming at him
And using my horn and blinking my lights and absolutely no one driving was accomodating us by pulling over

When I parked at the ER I pulled Tommy from the car and although he was gray, he was breathing, and clearly hot from the fever
I ran thru the ER doors asking for a nurse and explaining my child was having breathing trouble

And from there, the lead ER nurse and a team of doctors helped stabalize his breathing.  Tommy was so scared.  I kept my voice quiet and close to his ear and told him what was happening.  Because although Tommy can't expressively speak, he hears and he listens and he understands! 

 I said they are here to help.
  Doctors fix.

I told the staff that as much as possible, I wanted to tell Tommy what was going to happen ahead of time, and not after it happened.  I told him "owie" for shots and gave him time to prepare and understand as much as that can happen.

I told him I loved him.
  Mommy holds you tight.
I sang Amazing Grace in his ear, over and over again.

Massive injectible steroids were given. Which took four people to hold him down.
He was immediately put on 4-5 liters of oxygen.
An iv was started and blood draws happened.

Oxygen saturation that started around 70%, with a gray colored child, gradually rose with those liters to 80%, and literally more pink returned to his skin, and the decision was made not to transport to Seattle, but to stay here locally at our hospital.

Tommy continued to stare at me. 
To look in my eyes. 
I never cried in front of him. 
 But held him and talked to him and rubbed his hands.

I prayed.  I praised.  I begged.  I bartered.  Once again, a miracle was performed by God with all the skilled medicine and staff.

And we were transferred after seven hours in the ER working hard at getting 'stabalized' to the inpatient floor.


So here on my updates from fb for our inpatient days, shared here for my blogging friends:
Tuesday morning:
Tommy informed me the "extended stay" is booked when asleep his oxygen levels fall ... so one more night at the not-hilton hotel. Lots of good stuff tho today, visit from Gma Sue, he ordered soft serve ice cream and pancakes for breakfast and even played on his ipad today. He was so brave today for a bladder scan and breathing treatments. We hope to be home tomorrow. Mend well Tommy!


The note above was on our door one morning:
Tommy's nurses are taking good care of him! After a long night that included an iv failing and two hours to find a new site (only one poke though) plus his respatory care folks and a wee bit of "roid rage" compliments of the prednisone, I rocked him back yo sleep well after 2am. I wondered why labs weren't drawn early but was grateful to see they let the prince sleep. Pediatric nurses rock!

Tuesday night:
His smile is back! We've giggled about our secrets tonight: one of us accidentally took the iv out while the other carefully convinced the Dr another wasn't needed, one of us ate 4 cups of chicken noodle soup while the other fell in love with tapioca pudding again, and someone has significant bed head .... okay that might be both of us. Let the last hospital slumber party night begin. We Luvs ya Tommy you keep secrets!


So, we are home. 
And I'm trying to piece together some time and love with my other three kids and hubby that had been concentrated just toward my lil sick gem Tommy. 
And I'm trying to relax and let God take Tommy's mending in his own time and ways. 
My worry grows thick at times and clouds my vision with a fog of anxiety about the future for Tommy and our family. 
 Caring for a special needs child is tough stuff! 
I'm not one to sugar coat that. 
And the last six months for Tommy in his wandering, escaping and now illness has made "down/relaxing/checking out" time slim.... actually non existant. 
So I'm calculating and planning how to nurture all of that back. 
Praising God in the meantime as He is the only physician and one that loves Tommy even more than any of us do, and that's hard for me to remember at times.

Tommy Adventures