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. 

Our Roller Coaster Ride for the Week

I'm not a morning person.  It's 5:45am so I thought I should tell you that.  I've had about 5 1/2 hours of sleep in the past 48 hours so I don't really feel like it's morning.  I just think it feels really, really late.  On Saturday morning, we brought Parker in to Children's Hospital in Omaha because he was having difficulty breathing.  The whole thing came on really fast.  This is what my little guy looked like last week:

This is what he looks like now:

I don't know if you can tell but he is giving a little smile in this photo and let me tell you his positive attitude and smiles make my heart flutter.  He's just remarkable.  He's gone through quite the roller coaster ride these last couple of days. 

When we arrived at the ER at Children's hospital on Saturday morning, they started running all sorts of tests, cultures, and x-rays right away.  It took five sticks to get an IV in.  Parker is always a difficult stick and this time was no different.  They ended up with the IV in his wrist which Parker can't stand because he likes to use his hands and chew on his fingers.

We all figured we were probably dealing with pneumonia but they said we were lucky to have caught it fairly quickly.  They think there are some super bugs at work too but it takes awhile for those to grow out to know exactly what we're dealing with.  This makes it a bit tricky to treat because the Dr.'s just have to guess what they are trying to kill.

He was admitted because his labored breathing was getting worse , he was needing quite a bit of oxygen support and his temperatures were getting pretty high.  They moved him up to his room and since it was the weekend we were being followed by resident physicians who were placing calls to their attendings for orders.  They started him on very strong IV antibiotics right away and he's been on 4 new and different antibiotics since we've been here.  He did have a reaction to one of them which turned his face bright red and gave him splotches on his arms and chest.  He likes to keep things interesting you know.

It turns out the resident physician that was overlooking Parker's care probably didn't realize the situation was as serious as it was and it wasn't until the nurse that was caring for Parker got her supervisor involved that we realized things were worse than we had thought.  A supervising physician came in and decided that Parker needed be transferred to the PICU and followed by the Intensivist as soon as possible.

Parker was working VERY hard to breathe for quite a long time and was just running out of steam.  They first tried him on CPAP, then BIPAP, and then ended up putting him on a ventilator.  I, of course, was not thrilled about him needing to be put on a ventilator for the third time in his life but I knew it was for the best.  I felt so much better about the whole thing once Parker calmed down and was finally able to get some rest for the first time in nearly two days. 

After he had been on the vent for awhile, he peeked his little red puffy eyes out at us and gave us his wonderful smile as if to say, "It's all right, I feel much better now."  Then he perked up a bit more and even wanted to play with some of his toys.  We played peek-a-boo, sang some songs, and he bonked us on the head with his magic green wand.  The sweetness of my little boy makes me melt.  He's such a trooper and I just love him to pieces!

We've asked for prayers and I know it's making a difference.  This thing came on strong and fast but he's doing what he needs to do to get better.  I'm so happy Parker is more comfortable and that he's in a place that can help him.  I'm grateful to the grandparents for taking such wonderful care of Alexa while Paul and I are away and I know she's going to be spoiled silly when we get home.  I'm wishing I wasn't such a light sleeper as some rest would sure be great but hey we can't get everything we want can we? 

Thanks for keeping updated on my little man.  We appreciate all of your love and support!

Lost in Fun with Cousins

When Alexa's cousins, Foster and Loghen, were here over the Christmas break, I took them all to an indoor playground called Lost in Fun.  They had a great time and I know Alexa felt so special that her older cousins spent so much time with her and she was able to do the same activities as the big kids.  

This play structure said it's designed for 5 years and up but there was no stopping Alexa.  She was probably the shortest kid in the thing but she is a little monkey and had no problem at all pulling herself up onto each platform and climbing as high as she could go.  She wasn't quite as fast as Foster and Loghen but they did a good job letting her keep up.

Alexa has never been a fan of bounce houses but that all went out the window when both of her cousins were bouncing away.  Now she can't enough of them. 

Foster is so great with Alexa and played with her so well.  I don't think you can say that about all nine year olds. 

Loghen sliding down the bounce house slide.

They had a great time in the ball pit.

Foster built a great tower out of foam blocks and Alexa decided she wanted to get in on the action towards the end.  She thinks she's taller than she is...

 SMILE!!

Alexa has asked several times if she can go back to the "indoor park" with Foster and Loghen.  Hopefully, now that they will be moving back closer they can get together for more fun activities soon!

Christmas 2011

I love Christmas.  It truly is a magical time of year.   This year was a lot of fun because Alexa is now at the age to take it all in.  She loved the holiday music, putting up Christmas decorations, making holiday crafts (including 22 snowflake ornaments which were made out of popsicle sticks and rhinestones that she gave out to family and friends), taking treats to the neighbors, and participating in special Christmas traditions.  She also now understands that we celebrate Christmas because that's when baby Jesus was born.

We had a lot of fun this year even though we didn't get a white Christmas.  It was actually warm-ish this year which is very unusual for Nebraska)

We started out by making Christmas cookies which, of course, was a huge hit with a certain little girl.

And Parker did a great job making sure Alexa focused on the task at hand.

We also went to the Lincoln Children's Museum and decorated a huge gingerbread house.  I won a gift certificate for this at my MOPS group and it was a lot of fun!

I think it turned out pretty good and believe it or not Alexa didn't snitch one piece of candy (that I know of).

 

We did our best to get a family picture with the Christmas tree.

We enjoyed spending time with family.

 

As usual the kids were spoiled with Christmas gifts.

Parker even enjoyed himself.  He thought the wrapping paper was the best part.

 Alexa had a great time with her cousins, Foster & Loghen, and is looking forward to them living a bit closer so she can see them more often.

Happy Birthday Jesus!