Westfall Web

Well the only pictures we took today were of Greyson and some visitors he had, DJ and Rachel are the grandkids of Alta one of our nurses (she is a NICU nurse that lives in Bremerton and is doing us a HUGE favor by helping us out and working for us when she can!).  Anyway we didn’t ask if we could put the picture on the internet and we try not to go putting peoples pictures up without permission (unless their family in which case we do it anyway, ha!). 

Today when I came home Greyson was in a FANTASTIC mood.  It must have been due to all the fun he had with the kids.  Whatever the case was he was all smiles and playful and we had a great time playing.  Greyson did great with his 15 minute vent vacations.  He is supposed to be awake for them since you naturally breathe more when you are awake but tonight Stacy said he feel asleep during the time but kept his sats up the whole time so she felt it was OK.  I am also pleased to announce that Greyson has been off oxygen since yesterday!  **editors note:  while this was a decision of Dr. Bob it did in fact fall within parameters set by a more reliable Dr. namely Greyson’s pulmonologist.  Dr. Bob is very well aware of the fact that he is not an actual Dr. and should not be making major decisions without supervision!  He may still require some from time to time but so far he is holding his own breathing room air.  In case this is not clear we have been feeding in pure oxygen into the ventilator to help Greyson breath.  Yesterday I took the oxygen away so the ventilator was taking room air and giving that to Greyson.  This makes it easier for him to breath but he is still breathing the same air we are (although its been filtered!).  This is very exciting as it means he is able to oxygenate his blood well and we don’t have to carry around oxygen with us all the time (well we will still carry a bottle with us when we go places as a back up, but before now we carried an oxygen concentrator and a bottle of oxygen as a backup, so we will be down one large thing!)  He seems to be doing so well I just can hardly handle waiting two more weeks to see the pulmonologist again.  Guess I’ll have to though and know that it is all in God’s hands, including the timing of everything.

Well today has been another good day.  I stayed up with Greyson till 4am (we put him in his own room before 10) and he did really well last night.  For both Stacy and I he didn’t thrash around as much and just generally seemed to be sleeping well.  This mornging Stacy took off to go to   get help filling out some paperwork that we didn’t quite understand so we got to have “boys only” time.  During that time Greyson spent his 15 minutes off the ventilator (he did awesome!) and we went outside and also let him lay on mom and dad’s bed.  Then we played games till Stacy got home.  Then this afternoon after a quick nap (mostly for me, but I think Greyson may have had a brief one too) we got more “boys only” time as Stacy went to school for a baby shower they were throwing for her.  We got a lot of new books as well as this wagon and bear (sorry you can’t see the bear that well, but it was a better picture of Greyson than the one where you can see the bear!) as well as some toys and other things.  Greyson and I really enjoyed the time we had together.

As you might notice this picture was taken while on the second 15 minute “vent vacation” which we really enjoy.  The only thing he is hooked up to is his sat monitor which is so much more manageable than his ventilator and oxygen!  Once he gets these vacations down pat all we will have to take with us when we go places is our go bag (which doubles as a daiper bag so nothing big there), the suction machine (we will have this as long as he has a trach) and probably an emergency tank of oxygen somewhere close. 

Wow what a day!  It started out (for me at least) with Greyson suprising me by coming in and laying in bed with me (he was on his 15 minutes “vent vacation”).  Then after church we ate lunch (well Greyson digested his as it is just poured into his stomach via his g-tube) and went for a ride in the car!  We went and towards Poulsbo and ended up seeing Mr. Bazzel (Debbie this is Kevin the guy who took you to the airports father!) and visiting with him before going into Pouslbo and getting doughnuts.  After that we headed back home so I could go back to church.  While I was at church Greyson sat on his mom’s lap in the doorway for his second “vent vacation” of the day and did great!  Once I got home we packed Greyson up and he is now sound asleep on our bed between us (well by his mom, I left to post this update!).  It’s been a fantastic day.  Greyson and Stacy even got me fathers day presents (gifts is my love language, so I knew I was loved!).  Stacy got me a cool new father sculpture that has a father holding his child in his lap, and Greyson loaded a picture frame (I think he found it around the house) with pictures of him in his John Deer outfit.  I’m so excited to be able to hang it in my office.  Well I better get back to bed as Stacy is supposed to be sleeping and I am supposed to be “monitoring” Greyson as he sleeps.  Night everyone!

So from what we have researched (isn’t the internet cool?) babies generally begin rolling from their stomach to their backs.  Well it may be a bit hard to make out from the pictures, but Greyson can now officially roll from his back to his stomach!  We are not certain he can make it back (although if he really wanted to he might be able to, we just haven’t seen it yet) but he rolled over three times from his back to his stomach while we watched.  He did have his right arm a bit tangled up, but he was definately all the way over.  It was really fun to watch because he was very slow and deliberate about how he did it, I think because he was being careful because of the vent.  He would roll onto his side and then slowly work his legs over until he could get his leg over and out in front of him.  Then he would slowly work his way down using his leg to keep him from going to fast. 

We also took him in his speedy g-mobile (the single stroller that we originally bought for him) on a tour around the outside of the house and a speedy tour inside as well while he was on what Alta calls his “vent vacation” or his 13 minutes without the ventilator.  We call the single stroller the speedy one because it is so much smaller, easier to drive, and we don’t use it with all of his “extras” so we can put him in and go much easier than his double stroller with all of his gear.  He continues to do well and actually the only problem we have with the trials is trying to keep the oxymiter reading accurately.  Between that and suctioning he does great!  We sometimes give him extra oxygen when we are not getting a good reading, but after suctioning or readjusting the sat probe he is always 97 percent or higher (he needs to stay above 95 percent while he is without the vent).  We are excited as we near the 15 minute mark.  Knowing how well he is doing we are beginning to find ways to enjoy the “vent vacation” time more and more.

On a personal note Stacy and I are actually going to head out to the movies tonight after our nurse gets here (sure hope she makes it now that we have plans!).  Our children’s pastor was kind enough to give us free movie tickets and we finally decided we could use them since we have a nurse tonight and tomorrow.  It’s been A LONG LONG time since we went to the movies together!!  OK so Stacy is in the back doing Greyson’s trach care, I think I’ll go see if I can help out.

Tonight we decided to bring Greyson in so he could check out the kitchen while we fixed up a real meal.  Stacy got it ready and I grilled the chicken and we sat at the dinner table and enjoyed a great meal.  Greyson wasn’t exactly at the table as his bouncy chair is pretty close to the chair, but he was close.  He kept looking at us like it was unfair as we ate in front of him.  Not to worry though, he got his food later. 

Now I am just relaxing in the chair by his crib listening to the hum and whoosh of the ventilator.  Greyson is finally sleeping soundly (as is his mom) which is very good.  We are the nurses for tonight so it is good that Stacy is sleeping well so that she can relieve me in the wee hours of the morning.  Well I guess I’ll surf hulu.com for some more tv shows I haven’t watched before returning to my reading!

Greyson had a good day today playing with his mom.  He is really getting good at holding his head up and can now use his stomach muscles to help him sit up when he is just being held around his waist.  He also reached out and grabbed a toy a couple times today.  We are very proud of him and how well he is developing.  He seems to be “catching up” after his time in the PICU when he was so sick. 

**Remember to play video left click on it once to select, then right click and select play.

Not much to report today other than Greyson went 20 minutes off the ventilator today!  His second session (the 20 minutes is broken into two sessions) he did really good and only needed a little oxygen at the beginning until he settled in, then he breathed room air and kept his sats up where they should be.  He’s doing really well and we are thanking God for the way he is working in all of our lives through this experience.

Today, being monday, meant Greyson had to to go into the Dr’s to get some blood drawn so we can see how he is doing with all his body chemistry.  Since it was going to be a quick visit we decided to drop by some friends from church and let Greyson hang out with them.   The Kollars (seen in the picture) were telling me about a week ago how they thought of Greyson as “our baby” so I thought it would be good for him to drop in on them.  He really seemed to enjoy it!

I also have to comment that Greyson was VERY good at the Dr’s today.  It was kind of funny because when we got off the elevator at the hospital (his pediatricians office is in the Silverdale hospital) he started putting his bottom lip out all pouty like.  Once we got inside though he warmed up with all the nurses coming in to check him out.  Then when the guy poked Greyson and drew the blood Greyson didn’t so much as make a sound (and no his cuff wasn’t up so he could have made noise if he wanted to!).  He was holding my hand and when he got poked he looked over at the guy who did it and then looked back at me like it was no big deal.  He’s a tough one I tell you!