Westfall Web

Greyson really enjoyed his prunes today as long as he had the spoon in his hand.  He doesn’t quite like eating yet.  He likes the taste but the textures make him gag quite a bit.  The therapist said that for him any food is like having a hairball on the back of  your tongue.  As we feed him more every day his gag reflex will move farther back until one day he will be a  pro at moving that food around with his tongue. 

Tonight he fell asleep in his chair and within a few minute had slumped down into this weird position.  I guess he was really tired.   It was a sure sign that it was time to go to bed.  So now we are all tucked in for a peaceful night (we hope!)

Well today Greyson had a big day.  At lunch time he decided it was time to eat, literally.  Actually the speech therapist came today and we fed him some red jell0.  They were really small pieces but we gave them to him (he wasn’t to sure about it but did eat them) then we suctioned him to see if we saw any red which would indicate that jello had made its way into his windpipe.  Well he ate some, we suctioned, and there was NO red!   So that means we can now start giving him food twice daily (the food will be in VERY small amounts just to let him begin to work with it).  So after I finish this we are going to the store to get some baby food! 

Then we decdied to take him to Vacation Bible School tonight and he got to experience being around kids and music.  It was a bit overwhelming for him but we think he really enjoyed it.  It was a really fun day!!

Well today I came home from work a little early as Stacy had called and I could hear in her voice that she needed to get out.  So we loaded up Greyson (without a ventilator YES!) and went out into the beautiful daylight.  We stopped by Walmart and Greyson and I played in the car while Stacy ran in and bought a special nose sucking device, then we went to Starbucks and decided to take Greyson inside.  This is the first time he has been inside anyplace except the Dr’s, or two other peoples house that we have visited.  Pretty special occassion!  He seemed to like it but got a little upset when we didn’t give him a mocha, but instead handed him a straw to play with.  At first he was a little upset but once we taught him how to shoot spit balls he kept himself quite entertained while we were there.  OK maybe that was a little bit of a stretch but he did enjoy playing with his straw and got quite a grip on it.  I had a hard time pulling it out of his fingers.

 Stacy bought this toy for Greyson awhile back when we got him a  new chair.  Until now he has not been that interested in it, but today he really started playing with it.  I guess it just takes him a little while to warm up to new things!

Today Greyson was off the ventilator for 2 and a half hours on two different occasssions.  We jumped an extra 15 minutes in the weaning process due to the fact that we accidentally went longer on Monday than we were supposed to.  Greyson is doing great with his time off the ventilator and has not been requiring oxygen during the days again which we are very happy about.  He also seems to be tolerating his Passy muir valve better everyday. 

Tomorrow will be a pretty big day as we are meeting with several people here at the house.  I probably won’t be here for most of them, but will be excited to hear how it goes.  We will fill you in sometime soon.

Also I have an update on Greyson’s dedication.  We have been asked to reschedule it to a different date, so we will let you all know when it is going to be once we figure out when we are going to do it now. 

Lately we have been having Greyson sleep on our bed.  We are doing it because it keeps us together as a family rather than having Stacy go off to bed (usually not long after I get home from church) while Greyson and I hang out till the wee hours of the morning.  The problem is while our bed is huge and there is room , it’s not the best place to sleep when you have Greyson there and you have to be doing all of his care.  So basically Greyson sleeps on the bed and whoever else is up lays on the bed.  The other person who is sleeping goes into the corner and sleeps on the little twin bed we have in our room (yes we are spoiled and have both a king and a twin bed in our room).  While this makes it nice that we feel we are all together, it is a little strange that the only person who sleeps on our new bed is Greyson.  Sure hope he doesn’t get to attached!

So we are thinking that Greyson requiring oxygen again is due to a bug we all picked up.  I wasn’t feeling very good last week and thought it was allergies since it was just a runny nose.  Well a couple days later I was feeling better but Stacy started having the same symptoms.  It now seems like Greyson is having a runny nose.  He has had a couple days where he didn’t seem to feel that well but seems to be getting back to his old self.  The good news is if he was sick he is making it though it OK.  Anything more than this could easily put him back in the intensive care unit (since he is on the ventilator if he has to go to the hospital he will always have to be in the intensive care unit).  Anyway now for the good news.  While his nose is still a little runny, he has made it most of the day without oxygen!  He made it the entire two hours he was on his vent vacation without oxygen and has stayed off the rest of the day.  We even ventured out to the store while he was on his vacation and grabbed some food…………get ready for this………..it’s pretty big……………WITHOUT taking the ventilator!!!  Now don’t freak out we had oxygen in the car and a rescue bag so we could have done a manual ventilator type thing if he had got into trouble, but it was pretty cool to be out and about without the ventilator and not hooked up to oxygen.  The only word that came to mind is FREEDOM!!!  Right now it’s almost 5pm and he is starting his second vent vacation.  Here he is now, I gotta go give him some affection!

Well we’ve been preparing for this day for awhile, our church throws a 4th of July block party and we decided to take Greyson.  He is up to 1 hour and 15 minutes for his vent vacation so we used the time to take him around and show him off.  It was a lot of fun.  There was a band playing (a bit loud for Greyson but he did OK, besides he needs to learn how to rock out!), lots of people, good food (well we had to tell him about that part, he had….well just milk again for him).  Tonight it was funny because when we were doing his second vent vacation we looked at the timer after a long time thinking it was about time to put him back on the vent, only to discover we still had 40 minutes to go! 

We aren’t really sure why but Greyson has been requiring oxygen again.  The interesting thing is when he has his passy muir valve in he usually doesn’t require any extra.  When he doesn’t he requires it even when he’s on the vent.  It could just be the extra work he is doing with these much longer vent vacations and the change in ventilator settings.  Aside from needing a bit of oxygen he continues to do very well.  I think the big day wore him out as he went to sleep before dark, and has slept through the war zone that is our neighborhood on the 4th of July.  As our country celebrates its independence we are celebrating our families two and a half hours of independence from the ventilator, wooohooo!

Today Greyson got a Johnny Jumper in the mail from his grammie.  Simple little thing but man did it take some work to figure out how to put it together.   Maybe I’m just a little slow these days but for something that just has a couple straps and a couple bars it took me about 10 minutes to get it figured out.  I need to stay more with the high tech toys I guess.

Greyson was OK with the jumper, as with most new things he didn’t show to much emotion either way.  By the end of his time in it though he was starting to get the idea that he could push with his feet and more himself around a little.  This will be a great item to help him build leg strength, something he hasn’t been working on in a long time.

He also got a visit from the newest member of the Plyler family.  Not sure how much they enjoyed each other, but they got along fine.  Poor Jillian (a baby girl who visited Greyson the first week he was home, see past entries for a picture) is about the only girl in this age group amidst a bunch of new boys being born into our church family.

Yesterday Greyson was off the vent for a total of 1 1/2 hours (two sessions 45 minutes each).  Increasing by 15 minute increments goes really fast, today he will be off for two sessions of an hour each!  Tomorrow the plan is to take him to the church 4th of July party for a little while if it is nice enough out, and we are making plans for his first trip to actual church the last Sunday of July 27.  The plan is to introduce him to church and do his baby dedication all on that day.  In case you needed an invitation, if you are reading this you are invited to join us at Bremerton Nazarene on that day to celebrate with us! 

Oh and the great news is I was way misinformed about our nursing.  We have one today and one coming on Friday night!  We also found out there is a new nurse that wants to work for us for 40 hours a week after she passes her boards in a couple weeks(pray she passes!).  God is good I tell ya again!

OK while he may think it is his bed, it is actually mom and dad’s.  After 13 years with a cheap $200 bed we decided it was time to get something new.  Of course Greyson had to be the first one to try it out!  We went with a king because we realized that when you put Greyson between us in our old bed, there wasn’t any room for mom or dad.  So we actually kept him in our room between us all night last night which was interesting (one stayed awake while the other slept).  The funny thing is my sleeping shift was from 3am till 8am (supposedly).  Well when I woke up I was thinking, man this bed doesn’t have anymore room than the queen did!  I complained to Stacy when I realized she had TONS of room and asked why she pushed Greyson so close to me.  Apparently she had nothing to do with it but with his moving around somehow Greyson was able to push himself (and the boppy he was laying on) right up close to me.  Oh well it was nice waking up and having him laying right beside me.  Tonight should be a great night as it will be the first night we have nursing in 4 nights.  This should allow Stacy and I to catch up a little on our sleep.  The down side is we won’t have night nursing again for a week.  I guess we can sleep when he gets in kindergarten!

*Don’t forget to play video left click on it to select, then right click and choose play.  If you don’t see the video you may need to install adobe flash player.

Stacy called me back to our bedroom last night and at first I was worried something was wrong.  When I walked in she said,”watch him”.  Well this video is what I found.  Greyson is big now on grabbing things that his hand finds and putting them in his mouth.  I’m not sure if this was a good idea but he sure enjoyed chewing on his cuff!  It was quite comical.

So I know I haven’t posted in a couple days, but what can I say?  Greyson continues to be a pretty normal kid (with quite a bit of baggage!).  Today we went and saw the pulmonologist and had a great visit.  He seemed very pleased with his progress and we came away ready to take the next steps.  First, they gave us a passy-muir valve to use when Greyson is awake.  This is a basically a one way valve that goes between the vent circuit and the trach.  It allows the breath from the vent (or air if he’s off the vent) to go in but prevents it from going back out.  This means all of the breath has to be exhaled through the mouth or nose.  Why is this important?  Well the trach is located below the vocal cords.  As I’ve commented on before when the cuff is up (or full) not much air can get around the trach  When the cuff is down air can excape and Greyson makes some noise.  Well with the passy-muir valve all the air goes past the vocal cords which means Greyson is a lot louder and can make noise much easier.  It also alows him to cough and sneeze out his mouth and nose.  After we put it on him he couphed a couple times and startled himself (it feels different to him with this valve).  He got scared and started crying.  Stacy and I were laughing so hard because it was such a different sound than we have ever heard before, even when he was off the vent in the NICU.  So that is a pretty cool thing. 

They also changed a vent setting so now Greyson determines how long his breaths will be, instead of having to take the breath the machine tells him.  This is a minor change but should be nice for Greyson’s comfort with breathing.  We are also beginning to wean him some more off the ventilator.  He has been at 15 minutes twice daily for a couple weeks but now we are increasing his time off the vent by 15 minutes twice a day until we get to 3 hours twice daily.  Yep, that’s 6 hours a day total off the ventilator!  This is very exciting news.  Of course this is dependent on Greyson doing well but we see no reasons at this point why he wouldn’t be able to handle the increases everyday.

The final thing from today was that the Dr. said it would be OK to start working with a therapist and have Greyson start taking some food by mouth to get him ready for the swallow study.  In case you forgot he needs to have a swallow study done in order to see if he can eat by mouth safely.  In order to have the swallow study he needs to be able to take 2 oz by mouth.  Well we don’t know if he can take 2 oz by mouth since we don’t give him anything by mouth because we don’t know if it’s safe till we have the swallow study.  Can you see why this gets complicated fast?  Anyway now we have permission (from a real Dr!) to begin working on this. 

We also learned today that Greyson is now 18.4 pounds and has grown longer.  He is also getting a big head from all his fans (OK maybe that just means his head has grown too, which is good!). 

We’ve been working with Greyson on “peek-a-boo” and tummy time and he is getting better.  Today Greyson got this blanket from his aunt Nancy and loved how he could poke his fingers through it and pull it around.  He also did very well with his tummy time and is getting the idea that he can lift himself up.  This is much better than the way it has been which is Greyson just resting face down on the ground with his nose planted into the floor. 

Stacy took him outside and I guess he laid out on the lawn for a few hours enjoying the fresh air.  He’s still not a big fan of the sun (and has to be careful with direct sunlight due to some of his medications) but really liked the shady area Stacy found in our lawn.  We took him out in the car tonight to go get some dinner (take out) and he seemed to really enjoy himself.  Tonight we have a nurse so we are very thankful for that.  It sounds like after next week we will be down to only two nights a week with regular nursing.  We know God has a plan but we often wonder if he is confusing the words more and less.  We are praying for more, yet seem to be getting less!  It’s in His hands though and we know that we just need to trust him with this like anything else.  He still gives us the grace (and nurses, finances, strength, ability, whatever else we need!) to make it through the day.