Westfall Web

So no picture or video for tonight.  I thought about just not posting anything but decided a few words is better than nothing.  Today was Sunday so Stacy took most of last night so I didn’t look like I was up all night when I went to church today.  We had a nurse this morning so Stacy got some sleep then and got a nice nap this afternoon while I watched Greyson.  Currently she is sleeping on the floor in Greyson’s room (where I’m typing this from the chair.  I told her the bed is more comfortable but she wanted to be close to her boys.  I think it is just the feeling of not wanting to go sleep in the bed all alone again, which I completely understand.  It is a bit ironic but while we will be together all week we will only be sleeping in the same room for three nights this week (four if you count tonight!).  Ahhh the challenges of parenthood.

That being said Greyson did well again on his ventilator free time.  16 minutes total today (two sessions of 8 minutes).  We have to give him some oxygen blow by sometimes but it is just a little wiff of extra oxygen and he does just fine.  Tomorrow we’ll move up to 9 minutes.  At this rate he will give me a great fathers day present of being off the vent for a total of 30 minutes!  If he makes it to that we will not increase it anymore until after we see the Dr. again to have him checked out.  So far it seems like we will make it to 30 minutes as he really has been doing well so far.

So today Greyson was laying on his boppy (the horseshoe shaped pillow not the bumbo chair) and he rolled onto his side (downward) so he was at the bottom of the boppy on his side with his face pressing into the floor.  Then he rolled some more and was basically on his stomach!  Stacy has seen this once before but it was a first for me.  So this afternoon we left him to roll around flat on the floor to see what he would do.  While he didn’t roll over he sure came close and was easily getting up onto his side.  He just needs to learn how to throw his leg a little further forward while he’s on his side (or shift his hips) and he will be rolling from his back to his stomach.  This is both good and bad as he doesn’t always remember to make sure the vent circuit is positioned properly for such a feat.  We will have to keep our eyes a bit closer on him now!  I think that’s progress!

Greyson loves to sleep with his lamb, and we got this picture of him actually putting his arm around it as he fell asleep. 

So yesterday and today have been good days.  I actually took Stacy out for dinner last night (no where really nice as most places close up by 9pm).  We settled on Red Robin once we realized it was too late for most places to be open.  It was nice to go out of the house with her for a change.  Then today we went out to lunch (Arby’s, no one ever said I wasn’t a romantic!) and went to a graduation party for one of the teens from church. 

As far as Greyson goes, well he’s still pressing on.  Today he did 14 minutes off the vent (two 7 minutes sessions) and he seemed to do fine with it.  It seems like he sometimes struggles a little bit to get into a groove with his breathing, but always does OK and is usually breathing more “normally” by the end of his time off the vent.  Tomorrow he will get two 8 minute sessions so we’ll see how that goes. 

We now take down his cuff during the day and have really enjoyed listening to him tell us stories.  He seems to be slowly learning how to make different noises, and that the noise he is hearing is coming from him.  He’s developing and we are thankful to see the progress he is making. 

*Note to the Ryan’s.  I said I was going to post something special for you, but didn’t get a chance to make it.  Keep watching the blog and hopefully I’ll get it on here in the next couple of days.  Sorry it is going to be late!

Yes that’s right, Greyson is laying in our bed (in my spot to be exact!) and as you can see he settled in rather quickly.  While it took time out of her sleeping time both Stacy and I really enjoyed having him in bed with us, even for a short time.  At one point Stacy was trying to sleep (she has the early morning shift) and Greyson was pushing on her back with both hands like “hey, don’t roll over one me!”  Then again the way he was sprawled out maybe he was just trying to make more room for himself!  Must be having flashbacks to the huge bed he had in the PICU.So today he was off the ventilator for a total of 10 minutes.  Pretty cool stuff.  At this point we don’t really get to enjoy the time off the ventilator by doing anything special, we just unhook him and watch him very closely to see how he is doing.  As we get a bit further out and we are confident in how he’s doing we will try to utilize that time a bit more for something fun (like taking a quick trip to another room for a different view!).  God is good and we are thankful for all he has done for us.

Oh by the way, for those who are curious, Greyson is over 17 pounds now!!

 We didn’t get any pictures taken today (took some video) so here is a good picture from last weekend while Grammie Jo was here.  As you can see Greyson had a great weekend with his Grammie!

Ok so I didn’t update yesterday because I went to the Mariners baseball game and then came home (early so I could take over) to begin my shift watching Greyson so Stacy could get some sleep.  I was planning on doing an update sometime while I watched Greyson since I had to be awake anyway and there is not much to do between the hours of 10pm and 4am.  Well let’s just say it wasn’t a good night for father and son.  I’m not positive exactly what happened, but let’s just say I was scared more than I have been since he has come home.  So scared in fact that I went in and woke Stacy up from sleeping to come in and provide backup (of course I had already got the situation completely under control by then).  She rushed in and looked at him, his sat monitor, his vent, helped me suction him (I’d done this prior to waking her) and then kind of said, “so what’s the problem, he looks fine?!” I told her it was NOT good.  She shrugged and said he looked fine now and the next thing I know she was back off to bed!!  It probably wasn’t as dramatic as it seemed last night, but part of it was Greyson waking up with terror in his eyes.  His look could have had more to do with being woken up by gagging, but it still made my heart race.  I tell this story so I can remember it and talk to Greyson about the night things didn’t go well. 

So having said that Greyson is now done with his second day with time off the ventilator.  Today he got to spend 4 minutes off in the morning, and four minutes off tonight.  He did just fine yesterday and today so tomorrow we will go to 5 minutes in the morning and 5 at night.  It is very exciting to be taking these baby steps (baby steps, that’s funny!) towards freedom! 

Well unfortunately Grammie Jo had to head back home today.  I think she had a good visit.  Today we had fun playing with him before she had to hit the road, and boy was he enjoying it.  This could be the most smiles we have got out of him in one day.  Even at the Dr’s he was happy and smilling.  Perhaps that is because the neurologist said he was doing very good and that there wasn’t anything to be concerned about at this point, just to keep stimulating his brain by introducing him to new stuff, songs, etc.  Then we went to the Pulmonologist and Greyson did well on his c02 test (OK it’s not really a test, but they hook him up to what is called an end tital c02 monitor to see how he is doing with c02).  Today he was averaging 3 or 5 points lower than last time, which is positive.  Then the Dr. unhooked him from the ventilator and we watched him for two minutes.  Greyson did great, smiling and playing around with his hands.  You would have thought he was still hooked up to the ventilator if you didn’t know better.  His oxygen saturation stayed good and his c02 stayed the same for the whole two minutes.  Soooooooooo……..starting tomorrow we get to give Greyson two breaks off the ventilator (once in the morning and once in the evening) for three minutes each time.  If he does well we will increase the time off by one minute every day until he is off the vent for 15 minutes in the morning, and 15 minutes in the evening.  At that point we will wait till we see the Dr. again (only a week or so) to see how he is doing at that point.  If all is still going well we will work on weening him further off the ventilator.  We are praising God that we are at this point as it is the beginning of the process of getting him off the ventilator.  It will still take some time, but we are so excited to be able to begin the process.  God is good! 

Unfortunately the Dr. visit didn’t end all that well for Greyson.  We have to continue to monitor his lytes to make sure he is doing OK with his body chemistry.  Well they poked him twice in the arm and both times were not able to hit a vein and draw the blood needed.  Then we went downstairs and another person tried in his hand, without any luck.  Finally the IV therapy lady came in and poked him in the head (which sounds bad but really isn’t) and got the blood they needed to run the tests.  The really sad part about all that is that Greyson was crying really hard, and for the first time ever actually had big tears running down his cheeks.  It was really hard for me since I was the one holding him down while they poked him.  I could handle him crying (seen that before and I know this is necessary) but man to pull out the big tear drops for the first time just about broke his dads heart looking into that sad sad face with, “but why are you doing this dad?” written all over it.  I’ve told him about a thousand times already today that I was sorry but we had to do it to make sure he is OK but somehow me telling him doesn’t make it OK for him.  There will have to be extra father/son playtime this week to make up for today.  I’m glad he loves me inspite of it all (as evidenced by some of the looks he gave me after it was over).  Ever wonder how much it pains God to watch us go through something that we need to go through for our own benefit?  Must be something like today. 

Well since it was sunday Greyson went outside for a bit today.  He didn’t go to church but told us he feels close to God by enjoying His creation or something like that.  No really he wants to go to church but his parents won’t take him, at least not yet.  Stacy and Grammie Jo did take him outide for a photo shoot though.  As you can see he looked really good!  He did have a problem keeping his eyes open as he is not a big fan of natural light.  We’ll have to work on getting him some more sun so he gets used to it.  He looked all ready to go to work so I’m hoping for him to start bringing in the big bucks soon. 

Well being the first of the month here in a few minutes we have to do a trach change.  That is where you pull the entire trach out of his throat and insert a new one.  It’s a little stressful for us but I’m sure it will go fine as they all have.  Thankfully we only have to do it once a month!