A Special Child

A Special Child
by Sharon Harris


You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.
And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We're proud that we've been chosen,
To help you learn and grow,
The job that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all- "Real Love"

Parker is Home!

Parker got to come home on Friday night.  My little man was so excited to be leaving the hospital!  We were waiting in the hospital lobby for Paul to pull the van around and pick us up and Parker was giggling so loud that I (and everyone else in the lobby) was able to hear him laugh around his trach.  It was so great!! I think he was still full of his "happy medicine" so that was part of the excitement but it was nice to see nonetheless.

They decided to stop Parker's IV steroids and IV antibiotics on Thursday.  I was very concerned with the side effects the meds were causing and we weren't really sure which one of the meds or a combination of the them were causing the issues.  He was having seizure like symptoms (more pronounced eye shaking and extremity twitching), he was really out of it, and had pretty terrible diarrhea.  They decided he had been on the IV meds for long enough.  The Doctors made some changes so he could be on meds that can be given through his g-button and inhaled with a nebulizer.  By Friday, most of the concerning side effects had passed and the Doctor's were very pleased with his progress. They said we could continue with the regimen at home since we have all the equipment available.  

His medication and treatment schedule at home is a little overwhelming right now.  He gets 16 doses of scheduled medication and treatments during the day.  He also has a pretty good list of PRN (as needed) medication on top of that. I had to create a very detailed medication schedule to keep us and the nurses on track.  So far it's all going well.  Parker didn't even need oxygen on Friday night but has needed a bit since then.  He wasn't really wanting to sleep for the first couple of days but I'm guessing that was because the high power medications were still in his system.  He's doing better with all of that now and is back to his giggly, smiley, playful, cuddly self.

When we got home on Friday, Alexa seemed to be very excited to see us.  We got lots of hugs and kisses.  It meant the world to me and I was so glad to be home.   I was so far beyond tired by Friday night and Paul could tell.  He let me sleep in until 1:00pm on Saturday and I needed it.  I'm quite sure I got more sleep in that one night than I had got all week in the hospital.

My mission right now is to try and get our insurance company to cover Home Health Care therapy so I don't have to take Parker to Out Patient therapy one time a week.  I'm sure that playing with the same equipment and toys as a bunch of other sick kids during cold and flu season isn't a good idea.  Our insurance says Parker needs to be "homebound" to receive in-home therapy and I'm trying to convince them that he should qualify.  Wish me luck.  

I do want to say a BIG THANK YOU to all of you who prayed for Parker and our family over this past week or so.  Parker worked through this illness really fast and this whole thing could've turned out a lot worse and I attribute that to all of you who prayed.  So, thank you and I can't begin to tell you how much that means to us!!

Parker's Day

The big news of the day is that Parker came off the vent.  He's still on CPAP with pressure support but it's a step in the right direction.  He's also been tolerating his feeds really well and is less puffy.  He's still getting IV antibiotics, oxygen, steroids, breathing treatments, chest physiothearpy, and lots of medications through his g-tube.  We were hoping he could have a PICC (peripherally inserted central catheter) inserted so that we wouldn't have to worry about his peripheral IV that's in his hand.  Peripheral IV's don't tend to last very long and since he still has several days of IV antibiotics left we wanted a better route to deliver the meds.  AND if he had a PICC line, we could administer the IV meds at home once we were trained to do that and thus wouldn't have to stay in the hospital just for that.  Unfortunately, they were unable to place the PICC line which broke my heart because Parker went through a lot while they were trying.  They had to give him an anti-anxiety, a narcotic, and a sedating medication during the procedure because he was so upset about the whole thing.  I don't think any of them really kicked in until after they were done so he was kind of totally out of it all afternoon.

He started to perk up a bit this evening but he's still really tired.  I hate seeing my little guy this way but I am so happy at all the progress he has made and I'm hopeful we can wean him off the CPAP tomorrow. 

Both sets of grandparents and Alexa came to visit Parker tonight.  Parker was still pretty out of it but he did give Alexa a big smile when she sang Twinkle Twinkle Little Star and Baa Baa Black Sheep to him. Seeing that meant so much to me.  I've got the two best kids in the world I think. 


We found out tonight that there are two bugs involved in Parker's illness.  Both of which would be fairly easy for Parker to get because of his compromised status and his trach.  The main diagnosis so far is tracheitis and pneumonia.  They're just trying to decided if continuing the IV medications for 6-10 more days is necessary or not or if there is an alternative.  It's a tough call to make because leaving him on these high power medications if he really doesn't need them can have unpleasant outcomes but not leaving him on long enough could cause the illness to get worse or cause other problems.  So...we're leaving that up to the Doctor's to decide. 

So for now we're just playing the wait and see game and trying not to go to crazy in the meantime.  Thanks for the prayers and hopefully I'll be writing my next post from home.