Jan 18

You lookin at me?

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Even though his dad wasn’t expecting much with the last nights gas Greyson decided it was time to have a good one.  Last night his c02 was down to 61, I sure wasn’t expecting that!  I’m so proud of him!  He is still requiring a little more oxygen than he was a couple days ago, but as long as his gas is good we are extremely happy about it. 

I didn’t get to go again today as my head is still stuffed up.  I really doubt it is anything contagious but would rather be safe than risk giving him something.  We’ll see how I am tomorrow.  Stacy said he did really well today and enjoyed having tummy time with his mom.  He also really enjoyed having his back rubbed, and managed to do it without twitching everytime she touched him!  Stacy could tell he really enjoyed it because he just melted into her lap.  That’s about all I know, it’s hard to know what to write about when I don’t get to go.  Hopefully tomorrow I’ll feel better and get to see him.  Two days in a row is killing me!

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Jan 17

Funny Reflex

                                                                                                           *To play video make sure it is selected, right click and select play.

Well you’re getting this update a little early.  Stacy went earlier since I wasn’t going with her.  I woke up this morning feeling pretty crummy and don’t want to risk passing something on to Greyson.  So Stacy went and I stayed home.  She took our friend Jen with her and the news is that Greyson was quite taken by her.  Stacy said he just couldn’t take his eyes off of her.  I guess I’ll have to talk to him about the need to find someone a little closer to his own age.

Sounds like they had a good visit.  Once Stacy put Greyson on his stomach on her lap he really settled in and relaxed (I guess with the exception of being jumpy every time she touched his back!).  Unfortunately last night his c02 was still in the 70’s, 75 to be exact.  No new orders so we will continue to ride it out I guess.  Today is his non DEX day so I’m not expecting much improvement in his numbers.  That being said I love to be wrong when he does better than I predict!

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Jan 16

A picture is worth a thousand words, this one speaks for itself.

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Today was a fun visit.  For the most part Greyson was calm and happy.  He got fussy a few times but nothing like he’s been doing over the last couple of days.  Of course it wasn’t the perfect day.  Greyson’s c02 was 76 last night.  We’ll have to wait till tonight (probably tomorrow as I’m exhausted) to see if they are any better after getting the steroids tonight.  We knew the new canula schedule and getting the DEX every 48 hours would be a lot for him, hopefully it is not too much.  We were just starting to feel like we were making some progress at the end of last week.

In case you lost track today is the day Greyson should have made his appearance into the world.  Yep we are finally at his due date.  It was a bitter sweet day as a couple we had made friends with from Canada learned their baby is well enough to transfer to Canada.  We are so happy for them but will miss visiting with them. 

Greyson got his fourth bath today but was really tired and didn’t react much to it.  He did wake up at the end and we got some great pictures as we dried him off.  He looked good and except for the bad gas number last night and requiring a bit more oxygen today it was a great day. 

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Jan 16

Now’s the time mom, let’s make a break for it!

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Greyson did OK today although he still had many episodes of crankiness.  Part of it was gas, part of it was reflux, and part of it was being tired.  No new orders or changes to his plan so really not much to report from today.  It was hard to leave him because he was crying so much.  It’s really hard to leave him when he’s awake, and even harder when he is awake and unhappy. 

Tonight was the night of the big baby shower at church.  I haven’t looked through all the bags but it looks like we got a TON of stuff.  It’s a good thing we took two cars as our Kia Sorento was full and there was no room for Stacy to ride home with me!  I was stoked as I even got a gift.  Shaun got me and Greyson matching mini frisbee golf discs.  I thought about taking them into the NICU tomorrow to play a round with Greyson but think only bad things would probably result.  I’m not sure the arm hole of an isolette would be an appropriate hole to shoot at.  Not to mention the “kids in cribs” hazard.  I’d hate to see one of them get hit with a slightly off target disk.  So I guess we will wait till he comes home to begin his frisbee golf training. 

Greyson’s c02 was 65 last night.  We are hoping it stays under 70 as he settles into the steroid weening process.  If he can hold his own as he gets off the steroids it will be good for him.  Yesterday I forgot to report that he had an echo of his heart to see if the steroids were causing any thickening of the left side of the heart muscle.  The echo showed that the left side was fine but the right side showed some thickening.  This means the DEX is not causing the heart to thicken, but because his heart has to work harder due to the chronic lung disease, the right side has thickened.  Over time (as always) this should get better as his respiratory problems improve and his heart doesn’t have to work so hard. 

Well it’s late and there are lots of new things to look at!   

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Jan 16

Now’s the time mom, let’s make a break for it!

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Greyson did OK today although he still had many episodes of crankiness.  Part of it was gas, part of it was reflux, and part of it was being tired.  No new orders or changes to his plan so really not much to report from today.  It was hard to leave him because he was crying so much.  It’s really hard to leave him when he’s awake, and even harder when he is awake and unhappy. 

Tonight was the night of the big baby shower at church.  I haven’t looked through all the bags but it looks like we got a TON of stuff.  It’s a good thing we took two cars as our Kia Sorento was full and there was no room for Stacy to ride home with me!  I was stoked as I even got a gift.  Shaun got me and Greyson matching mini frisbee golf discs.  I thought about taking them into the NICU tomorrow to play a round with Greyson but think only bad things would probably result.  I’m not sure the arm hole of an isolette would be an appropriate hole to shoot at.  Not to mention the “kids in cribs” hazard.  I’d hate to see one of them get hit with a slightly off target disk.  So I guess we will wait till he comes home to begin his frisbee golf training. 

Greyson’s c02 was 65 last night.  We are hoping it stays under 70 as he settles into the steroid weening process.  If he can hold his own as he gets off the steroids it will be good for him.  Yesterday I forgot to report that he had an echo of his heart to see if the steroids were causing any thickening of the left side of the heart muscle.  The echo showed that the left side was fine but the right side showed some thickening.  This means the DEX is not causing the heart to thicken, but because his heart has to work harder due to the chronic lung disease, the right side has thickened.  Over time (as always) this should get better as his respiratory problems improve and his heart doesn’t have to work so hard. 

Well it’s late and there are lots of new things to look at!   

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Jan 14

Swing Time!

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Tonight we’ll start with the facts.  Greyson is 7 pounds 13 ounces.  His c02 last night was 61.  I am very tired, yet very anxious to hear what his numbers are for tonight, so I may have to stay up to hear them.  Last night I stayed up and called in around 1am to get the numbers and then had trouble sleeping.  So I started playing risk on the computer.  Bad idea.  I got back in bed around 3am and man was I tired!  So I’m laying in bed almost asleep when the phone rings.  Never a good thing at that hour of the night.  I then looked at the caller ID.  “Unknown name, unknown number” showed up.  Nooooo….that is what shows up when the hospital calls and they don’t call at 3am for something good.  So I take a huge breath and answer the phone.  “Is Bob Westfall there?” asked the lady.  “Yes this is Bob” I replied.  “This is so and so from such and such alarm company, we are showing an alarm at the Bremerton Nazarene church.”  Alarm company!  YES!  Someone is just breaking into the church there is nothing wrong with Greyson!  I was so happy. 

Today Greyson was in this swing when we came in.  He really seemed to enjoy it.  He was just swinging back and forth sleeping for several minutes.  Then all of a sudden he got really fussy and I leaned down to comfort him.  Well he made quite the stinky noise.  So when Stacy and I went to change his diaper we had quite the experience.  Now we have gotten pretty good and working together to change his diaper, but now Greyson has a wedge in his bed to keep him propped up to help with reflux issues.  The nurse said we could use the end of the bed, but that we should probably not leave him level very long as he was still in the middle of being fed.  So I was holding Greyson at the end of the bed keeping him propped up while Stacy started changing his diaper.  He was a mess and so she started raising his feet to see underneath him and make sure he was getting all cleaned up.  Well as she raised his feet, I raised his head.  Pretty soon we were changing his diaper in the air while holding him about 3 feet above his crib.  One RT walked by and said, “what in the world are you guys doing?!!!”  I’m not sure if you can picture it but it was really quite comical. 

Oh by the way, after going down to the church it was a false alarm, it wasn’t getting broken into.  Anyway today was a tough day for us as Greyson was really upset for large portions of the time we were there.  We think the problem was reflux and he was crying so hard at times I thought he was going to make himself pass out.  This is probably just a part of parenting but coupled with everything that has happened and where he still is it was very hard to watch. 

He also seemed to be struggling with his breathing a bit so we are wondering if he is going to be able to handle the new canula, cpap schedule.  It’s pushing him a lot and coupled with the fact that he didn’t get any steroids yesterday may have been to much for him.  We’ll see what his gas is tonight to give us better insight into how he’s doing.  This is the main reason I want to wait up and call in tonight to find out what the numbers are. 

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Jan 13

More about today.

Stacy came home with no pictures (something is wrong with our camera, I’ll get it fixed tonight) but funny stories.  On a side note–have you noticed how much I like parenthetical statements?  I also love that word.  Parenthetical. ha!

OK so Greyson has been pretty hot lately which is bad because he sweats and then he is wet and gets cold.  So last night the nurse used a pillowcase for a swaddling blanket so it would be cooler for him.  Stacy said that when she got there today Greyson had been swaddled with his arms tucked by his side.  Well apparently when she looked at him he had pulled the pillow case all the way up so it was covering his face.  She asked him if he had “pulled the covers up” and was trying to sleep in.  How funny, he’s just like his parents!

Greyson’s feeding tube also got pulled out somehow followed by him throwing up.  No lunch for him today I guess.

The Dr. made several changes to his care plan today.  Basically the ones I remember were:  1.  Increased feeding amount (up until now the changes have just been about how fast he got the food over a three hour period, not how much).  2.  Started him on some medicine to help with reflux.  3.  Ordered to attempt to ween him off the DEX by giving it to him once very 48 hours instead of once a day.  I think that was all Stacy told me about today.  I’m anxious to get back over there to see him tomorrow!

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Jan 13

Afternoon update.

Well since several seem worried that I won’t give anymore updates, I thought I’d put your fears to rest.  Here is an update and it is only 1pm!  For those who think I am going to be “sugar coating” the story, fear not!  Greyson’s c02 last night was 50!

For those who think I will keep updating this blog and telling it like I see it, it’s true and by the way Greyson’s c02 last night really was 50!!  Praise God!  This is especially great (although a number like 50 with a chronic lung diseased child is great enough) because of the new orders from yesterday.  Greyson is now on a nasal canula rotation.  Six hours on, six hours on the cpap and so on.  Well they drew the gas after he had been on the nasal canula for over five hours.  This means he was tolerating it really well. 

Stacy is there now so I haven’t got the details for the day yet, but wanted everyone to know the great news and to rest assured that good or bad we will be telling the whole story here as seen through my eyes.

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Jan 12

umm…..excuse me I’m not decent yet.

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Well Stacy and I talked and almost felt like we shouldn’t share anything new today.  Seems several of you took the last couple days pretty hard.  Believe us we completly understand!  God is still working in amazing ways so hang in there!  On the one hand it is nice to know that so many of you are “right there with us”.  On the other we feel bad that our life, and the life of our little one, is making you feel sad. 

Anyway I was going to just tell a really funny story about my childhood, but I can’t remember any at the moment.  So I will say this.  Greyson’s c02 was still 60 last night.  He continues to tolerate his feeding.  He seems to be doing better since they slowed down how fast he gets the food, over an hour and a half instead of an hour.  He will need to continue to compress his feeds though as when he comes home he can’t eat that slow or all we will be doing is feeding him! 

He got new orders today so he will be on a new schedule with the nasal canula of six hours on and six hours back on the cpap.  It will be interesting to see how he handles it.  This would be a huge step forward if he can do it.  I’d say we are holding our breath but Greyson has shown us that doing that can be unhealthy.

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Jan 12

umm…..excuse me I’m not decent yet.

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Well Stacy and I talked and almost felt like we shouldn’t share anything new today.  Seems several of you took the last couple days pretty hard.  Believe us we completly understand!  God is still working in amazing ways so hang in there!  On the one hand it is nice to know that so many of you are “right there with us”.  On the other we feel bad that our life, and the life of our little one, is making you feel sad. 

Anyway I was going to just tell a really funny story about my childhood, but I can’t remember any at the moment.  So I will say this.  Greyson’s c02 was still 60 last night.  He continues to tolerate his feeding.  He seems to be doing better since they slowed down how fast he gets the food, over an hour and a half instead of an hour.  He will need to continue to compress his feeds though as when he comes home he can’t eat that slow or all we will be doing is feeding him! 

He got new orders today so he will be on a new schedule with the nasal canula of six hours on and six hours back on the cpap.  It will be interesting to see how he handles it.  This would be a huge step forward if he can do it.  I’d say we are holding our breath but Greyson has shown us that doing that can be unhealthy.

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