Westfall Web

OK maybe not every kid, but ours.  Tonight he just doesn’t want to go to sleep!  Last night he was asleep before I even got him on the ventilator.  Of course then he pulled a stunt that reminded us that having a child on a ventilator is not a simple thing.  We aren’t sure what happened but he started crying (silently) and then de-sated down to the mid 70’s.  The weird thing was he didn’t come up very quickly like he usually does.  So we unhooked him, woke him up, suctioned him, did cpt, basically all the things you are supposed to do and before to long he was back where he should be.  We really just wish we knew what the cause was, but we will never know that now.  Oh well.

Tonight we thought he was doing it again right after we put him on the ventilator.  He was fussing and turning really red in the face.  Then we realized he was just pooping.  Althought that means we have to unhook everything and take him out of his pack and play (well we don’t have to, but it is usually much cleaner and easier in the long run).  While I was changing his diaper he was just smiling at me like, “ha ha!”  He thinks he’s such a funny kid.

We realized we didn’t have any pictures yet of Greyson with his primary nurse Tina, so we had to get that fixed right away!  Tina is our day nurse who works with Greyson Tuesday through Thursday.  Well actually now she is working Tuesday through Friday for us as our other nurse didn’t work out.  Tina does a great job with Greyson helping him with his therapies (but tell him it’s play!).  God really was watching out for us as Tina just finished school and got her nursing license just in time to watch Greyson!  She goes to our church so we have known her for quite awhile and feel very comfortable leaving Greyson in her care. 

One of the things Tina is working on with Greyson is patty cake, and he is getting pretty good at clapping his hands together on his own.  It will be so much fun when he learns to throw it in a pan all by himself!

Well Greyson is getting back to his old self.  Looks like he is going to make it through this sickness OK.  He had it a bit longer than we did, but they say that is normal.  We saw the GI Dr. on Monday and he felt we did a good job of keeping him hydrated and that the bug would soon work its way out of his system. 

So last night we put him to bed around 7pm (WAY early for him) as he was ready for a nap.  We hooked him up to the ventilator thinking maybe he would just sleep really good and stay asleep all night.  Well he woke up around 9pm and then we put him back to bed and he fell asleep by 10.  Then just before midnight he was wide awake making noises and clapping his hands together, playing with his animals, playing with his TV.  The boy would just NOT go back to sleep!  I tried to leave him alone but had to interact with him some.  Finally just before 2am he decided to go back to sleep.  Crazy kid!

Stacy called the pulmonologist today because Greyson has been breathing really weirdly during the night.  His breath rate gets up to twice what it should be.  It’s pretty weird and seems to be something he is developing.  So she called the Dr. to see if it was anything to worry about.  They called us back and basically said it was fairly normal for trached kids and the only “cure” was to get him off the ventilator.  Say what?  Yep, the way to “fix” the problem is to get him off the ventilator.  So a week from this friday we are going to see the Dr. and it looks like we will begin the weaning process again to get him off the ventilator even at night.  This is pretty exciting as it means we are ahead of schedule.  Originally the Dr. wanted him to stay on the vent through the winter, but he has done so well and with this weird breathing thing they are willing to let us go ahead.  We’ll see what happens next friday after our Dr. visit!

OK it’s not a TV but that is what we have always called it.  Tonight we want to give a huge thank you to Aunt Debbie and Aunt Tammy for getting Greyson this toy.  Last December…………….scratch that…………..a year ago December when Aunt Tammy came to visit Greyson for the first time we were told he could have toys if they were solid plastic (so they could be wiped clean constantly).  Aunt Tam ran out and bought (with financial backing and encouragment from Aunt Deb!) this toy for Greyson.  Well we would just like to say that he LOVES it!  It sooths him when he’s upset and he can turn it on and off on his own now, which makes it even more valuable!

So I know I haven’t posted anything all week.  Well as it would turn out New Years Eve Stacy and I got sick, real sick.  We thought it was food poisoning as we ate some cookies that were made from some rather old cookie dough.  It was miserable but New Years day we were feeling better (although we just laid around and slept all day to recover from the day before).  We were so thankful it was food poisoning as then we could be certain Greyson couldn’t get it (hard to get if you don’t eat food!).  Well we went to dinner New Years day and it set me off again.  I won’t get into the gross details but it was no fun at all on Friday, kind of a New Years eve repeat.  Unfortunately our worst fears were also realized as Greyson began showing the same symptoms we were having.  Guess it wasn’t food poisoning and he did catch it. 

So if you remember our prayer and goal has been to keep Greyson healthy as sickness could cause trouble with his respiratory status (not to mention with this kind of “bug” dehydration is a very real concern) and cause him to have to go back to the hospital.  Well it is now Saturday night and he is still sick (we went through around 20 diapers if that tells you anything!) but he is managing it OK.  His breathing remains strong and so far he is not overly dehydrated.  So the bad news is Greyson is sick, with a doozy.  The praise, he’s taken it on the chin (or maybe bottom would be more appropriate) and seems to be getting through it OK. 

We have seen his smile again at times and heard him laugh.  We are pretty sure he is getting better and are praising God that He has kept Greyson strong enough to stay home through this ordeal.

OK tomorrow I need to write a long story about something funny and good, cause I don’t want you all thinking the longest posts are all about bad or medical stuff (even though that’s probably partially true, but he he was in the hospital for 7 months what do you expect?)

Would you all please keep a couple families in your prayers this week?  Yesterday we went and spent time with Arun’s family at his viewing.  We met them in the hospital as they let us come watch them do a trach change on Arun.  Unfortunately Christmas eve he went to be with Jesus. 

Upon arriving home from the viewing we received word from our friend John Gile that Brenda, his co-worker and avid blog reader, had died christmas day unexpectedly. 

Tonight another friend of ours called to let me know that his cousin had died unexpectedly as well.

 I certainly can’t begin to explain these things.  All I know once again is that God is a God of love and that He loves us beyond measure.  I know He is weaping with these families during these difficult times.  I also know He is there for those who seek Him.  Our prayer is that these families will run to Him and allow Him to work in their lives as only He can. 

Please keep these families in your prayers during this difficult time.

OK I know this is unusual to have such a serious blog along with what follows.  However I decided to include this video to remind us all that our loved ones are true blessings, and it is so important that we never take our time with them for granted.  It’s short but has been bringing a smile to our faces for the last couple of days. We hope you enjoy it.

This morning Greyson woke up and was wound up immediately.  It was as if he remembered all the toys he opened up last night and was dying to go play with them.  Once we came out and started playing, he played so hard that he wouldn’t let himself go to sleep.  He would be almost asleep and then roll over and play with a different toy.  Finally we had to take him in to his pack and play and take all his toys away so he would settle down long enough for a nap.  He did and then we played some more.  It was a fun day. 

I spent the day loading video of Greyson onto the computer so we can edit it down to something watchable (well it’s all Greyson so it’s all watchable, but you know what I mean) and get it down to just a DVD or two highlighting the last year.  I was amazed to watch some of the footage from events over the course of this last year.  WOW! 

From our family to everyone who reads this, Merry Christmas.  You know Jesus is more than just the reason for the Season.  He is the ultimate expression of God’s love for us.  May you know and experience the love of God more than you ever have before during this Christmas season. 

Well Greyson certainly had a big day today.  He got to interact with his Grammie and Papa via webcam (they got one for Christmas) as a test.  Then he got to go out to dinner with Mimi.  After that he went to church (such a good pastor’s kid going to church on Christmas Eve!)  He was such a good boy and barely made a peep through the whole service!  After that we came home and he opened his presents from Grammie and Papa while they watched via webcam.  We had a few glitches with the technology (don’t worry, it was our laptop causing the problems) but Greyson enjoyed showing off his new presents.  Once that call was done we called up Grandma Terry via webcam and Greyson opened the presents from her so Grandma great and her could see.  After trying out all the toys as well as a couple from mom & dad, getting dressed up in the Westfall traditional Christmas PJ’s he was just plain tuckered out!  He even slept through me carrying him into the bedroom and hooking him up to the ventilator.  Something he never does!   I’ll have to say it was pretty cool being able to enjoy the evening with Stacy’s and my families, even though we are many miles apart this Christmas.  Not quite as good as being together, but a nice alternative!

Now Stacy and I are going to play with some of the toys for awhile before one of us has to go to sleep (no nursing means someone has to stay awake, and it won’t be Greyson as he is already deep into la la land!).  It’s officially 12:01 here right now, so Merry Christmas everyone!!!!

Here is a picture of Greyson playing with his new toy.  His aunts got it for him for Christmas (yes this is the present we let him open early).  He has really started to enjoy it.  Greyson has also enjoyed visiting with his Grandma Terry via webcam this week.  He’s still not sure how she gets in the computer, but he seems to really like it when she calls his name and sings to him.  This week he also got webcam with his cousins.  It was a bit crazy with all of them at once (there are four of them!) but when they joined together to sing to him he was loving it!  It is so cool that we have the technology now to stay in touch (via voice and video) with friends and family. 

Tomorrow Greyson will get to open up a lot more presents.  I’m sure he will have more toys than he knows what to do with, good thing I’m here to help him play with them all!

Well I said I would put some cool stuff up today, and I got busy working on house hold chore stuff so I didn’t get to it.  I want to be true to my word so here is a picture of Greyson sleeping the other night.  He gets in some pretty funny poses during the night.

Today he enjoyed playing with one of his christmas presents (we let him open it early since we needed the cardboard and his grandma was here).  At first he wasn’t so sure about it but he was doing much better tonight.  I’ll try to get a picture up soon.  Thanks aunt Debbie and aunt Tammy!