Westfall Web

Well Greyson is continuing to do pretty well.  He is still on the cpap which means he is still breathing on his own, over 48 hours already!  His noon blood gas was a little higher than his midnight gas, but still OK.  As always time and more gasses will tell the story.  Hopefully his midnight gas will be around the same as what his noon gas was. 

They let him have a pacifier now and he really seems to like it!  It helps him calm down when he sucks on it.  This is a skill that babies develop at a certain gestational age, usually between 32 and 34 weeks.  Greyson really seems to have the sucking down, and so far he is able to suck and breath at the same time.  When we came in today he was sucking on the back of his hand.  He got going so good that you could hear this loud smacking noise as he would latch on to it and suck. 

We let him look at his toy for a bit today.  He really seemed to enjoy it.  His eyes are still developing but I think he really enjoys the changes with the lights.  He watched it for quite awhile.  As I’ve mentioned he doesn’t particularly care for the cpap machine so finding ways to sooth him is always good.

He continues to let out little cries.  They tire him out really quickly so when he gets really fussy and begins to cry it is usually only 3 or 4 cries before he stops and seemingly falls asleep.  It’s kind of funny to watch him get all red faced, let out a couple yells, then completely relax as he just has no energy left.  I know you are dying to hear his cry, but it may take me a few days to get the video ready.  This is my final week of school and I’m trying to ensure I don’t have to take the class over again!

Well after waiting a few hours at home we couldn’t take it anymore.  We set out again to go see Greyson.  We still spent three hours in the car, but this time we made it in to see him.  He continues to do well, his midnight blood gas (yep we were still there!) had a co2 of 61.  Not spectacular but not bad.  I got to hold him for about an hour and a half (you probably guessed that from the picture of Greyson and I waving to you all!) and then Stacy held him for about an hour.  While we still can’t hold him all the time it is less tramatic to pick him up now and move him.  This is largely because you don’t have to worry about the tube moving out of place.  With the Cpap, if it moves off his nose you just put it back.  So he has been breathing on his own (with the help of the cpap) for over 27 hours now!  We also got to hear his cry.  I’ll try to upload a quick video clip to share it with everyone tomorrow, if I can find the time.  Work and school really cut into my Greyson time something terrible!  Anyway his cry was pretty sad and tiny but we were so excited to hear it! 

 He is still on DEX but they cut his dose down and he will probably be getting off it completly soon.  This will cause him to have to work harder to breath, and again that fact coupled with the reality that he will probably get tired means he will probably have to be put back on the vent before to long.  Remember this is OK because the time off the vent helps him tremendously.  Not only that it shows that he can do it!  If he has to go back on the vent to rest it is just a part of the process.  Every baby we have come to know in the NICU has had to go back on the vent after being extubated.  That said every one of them is now upstairs or discharged from the hospital.

 OK it’s extremely late.  Go to bed everyone.

Oh one more thing.  Greyson was awake for his midnight care time.  He made a mess of his diaper, as well as all the wipes we put down under him when he went again.  So after cleaning him up he was still looking all around and very awake.  We decided to let him look at his Aquarium toy that his Aunts Tammy and Debbie got for him.  He seemed pretty intrigued by it.  OK, I probably should have saved that story and made it sound better………………..Oh well.  Night all.

Well we set off to go see Greyson this morning at about 10:30am.  There has been a bit of rain here.  After 3 hours we finally came back home as we couldn’t find an open road, or one that wasn’t clogged with traffic.  We may try again tonight but we will have to see how things are going.  This is a picture we took of a car that helps you see how deep the floods were in places!

This is a pic of Greyson on the Cpap.  He doesn’t love it but it is a major step toward coming home!  God has been so good to us!

My oh my what a day!  We received word this morning that Greyson was doing well and they had written orders to continue the DEX (steroid) a little longer and ween his vent rate by 6 every 6 hours provided his blood gasses were good.  Well when we arrived at the hospital at 2:30pm (yes I got out of working tonight and got to go!) his nurse told me he was at a rate of 30.  I was puzzled and said “what a minute that’s not right!”.  Of course I was doing the math based on what he was at when I had last talked to the nurse reducing the number by 6 every 6 hours.  Well he continued to do well so they weened him even faster than expected.  So they had just turned him down to a rate of 30 and were doing a gas.  His co2 had jumped to 60.  Not terrible but up 10 from the last gas.  The Dr. decided to stay aggressive on the ween and turned him down to a rate of 25.  I was sure his gas would be even higher since they had turned him down some more, but his gas came back with a c02 of 47.  So they turned him down to a rate of 20.  At 7:30pm we all waited (with the Dr. not far away as he was very interested to see what the numbers were!) for another gas to come back.  If it was good they would try to extubate Greyson.  It came back with a c02 of 57.  So just before 8pm tonight they extubated Greyson and put him on a cpap. 

**Very Important note–Most babies “fail” the first time they are extubated.  This usually happens sometime within 48 hours of being extubated because they get tired out.  For Greyson this will be compounded as they ween him off the DEX.  Basically once they remove the DEX his lungs go back somewhat to where they were before he got the DEX.  Having said that the process of being extubated, even for a short time, is a MAJOR step forward.  Even if he has to be put back on the vent (which he probably will) this time off of it allows his lungs a chance to heal and helps him develop his breathing muscles. 

OK so after breathing on his own (with cpap which is constant positive air pressure), his blood gas c02 was 56.  He will have another gas at midnight.  Soooooo……so far so good!  We stayed for a couple hours with our hands on the camera hoping we could capture his first cry but unfortunately he hadn’t cried by the time we left.  Again time will tell but we are certainly celebrating the fact that at least for awhile, Greyson is breathing on his own!

We also briefly got to see his face completly free from any tubes!  Hope you enjoy the picture!

Well today has been just a great day.  Greyson was very alert during all of his care times and his gasses have been coming back excellent.  His latest gas (8pm) had a c02 of 37!!  With numbers this low the Dr. will definately make another ventilator change.  To let you know where he is at, Thursday night he was at a rate of 60 with a PIP of 32.  His co2 was 97.  Tonight his rate is at 54 with a PIP of 22 and his co2 is 37!  This is fantastic.  His oxygen requirements have also come down and he is needing about 25 percent oxygen (remember room air is 21 percent).  It has been A LONG time since he has been this low on what he needs.

Today his nurse told us how alert he was after his care, looking all around.  She suggested we might consider getting him a aquarium toy that hooks to the crib for him to look at when he’s awake.  His aunt Tammy jumped all over that and we rushed of to Baby’s R Us and got one.  He looked at it a bit when we brought it in but I think he’s waiting till later to really check it out.  Today has been such a big day for him he’s a little tired out.

OK so that’s all I have to talk about other than we are just so thankful for all God is doing right now.  Yes he got the DEX and that is certainly having an effect, but we know that ultimately it is God who is at work in Greyson’s life.  We are feeling so good we have decided to venture out to the movies tonight to celebrate.  Gee…..it’s been a long time since we went to the movies!

So I forgot to mention that yesterday a really funny thing happened.  Greyson is on continuous feeds and so every four hours they pull out the contents of his stomach to make sure he is not accumulating to much food and to ensure it looks OK.  After they do that they push all the air out of the syringe that they got from his stomach and give it back to him.  Well yesterday the nurse got distracted while she was pushing the air out and because the syringe was pointed up, shot milk all over Stacy!  It was so funny!  The nurse told Stacy that now she can say that Greyson has spit up on her.

On a more serious note, we called and checked on how Greyson is doing this morning and his latest c02 was in the 30’s!  This is awesome!  With a number like that they will reduce his vent settings again.  We are so excited because it really looks like the steroids are kicking in and having a very positive affect.  (Tammy, my sister, thinks it could just be that she has finally made it to see him.  Either way we are very excited today!)

Well today was certainly a better day.  It started off a bit rough with the hospital calling and saying they thought Greyson may have an infection because he was really hot.  They ran some tests which came back negative but finally started him on antibiotics just to be safe.  The steroids he started weaken his immune system which puts him at great risk for developing an infection.  His temperature was fine all day though and it doesn’t look like he had anything.  In the off chance he did, he’s getting the antibiotics.

Today he was requiring much less oxygen (35percent verses 60 percent he has been on).  His blood gasses have been much better as well.  They were able to turn down the vent a little on both the rate and the pressure, although the pressure is still higher than we would like it.  If he has a good gas again at midnight they will make another adjustment to the vent.  So it is looking like the steroids are having a positive impact.  He still has a long way to go but it was nice to see such positive improvements. 

The downside was since they started him on antibiotics he now has an IV line in again.  This isn’t a big deal but they had to put it in his head because they couldn’t get one started in his arm.  This is actually good for him, but it looks kinda bad.  Although in a weird way you can kind of look at it like a little hat……..or maybe that is just me.

So Stacy has invented a new game with Greyson.  She will grab his arm and start to raise it up while she says …..”up, up, up, Yeah!”  By the time she gets to the yeah Greyson usually shoots his arm straight out.  The funny thing is usually he will let her do this several times before he either refuses to bend his arm again, or refuses to straighten it at the appropriate time. 

Thank you to everyone who has been praying extra hard for Greyson’s lungs.  Please don’t stop now!  God continues to touch him but the fight isn’t over yet.  Today we are just thanking God for the improvements and for giving us a good day after a couple tough ones.  Oh and did I mention he is now 4lb 4 ounces?!! 

Today’s pic is of Greyson in a little mitt Stacy knitted for him, yes his hand really is in there!  If she can find time she has plans to knit another one so he has a set!

Also I talked to Sebastians parents today.  They are very grateful for everyone’s prayers.  He has shown a lot of improvement over the last couple of days.

Sorry for no posting anything yesterday, it was the beginning of a long night followed by a longer day.  Greyson’s c02 numbers have continued to climb.  They stopped weening him in the hopes that they would come down and they could begin weening him again.  Unfortunately this didn’t happen.  So they increased his vent settings and the numbers got better for a short while and then started to rise again.  Last night the Dr. talked to us again about using the steroids.  It was his opinion after reviewing Greyson’s chart that if they were ever going to be used, now was the time to do it.  We didn’t want to rush into this so we decided to wait and see how his midnight gas numbers were.  They were really bad.  His c02 had risen to 87 (this number should stay below 70).  They raised his vent some more and eventually got the numbers into the 60’s.  This also meant that he was now back to being pretty much maxed out on the vent.  After talking to the Dr. this morning and seeing his blood gas numbers, not to mention walking in while he was de-sating bad and not coming back up for a long time despite being bagged, we elected to start the steroid treatment.  He received his first dose at 4pm today.  At 6pm his blood gas came back worse than ever.  His c02 was now 97.  They increased the vent again to a PIP (pressure) of 30, 2 above what they want to use with this ventilator as the pressure can do significant damage to the lungs.  An hour later his c02 had come down to 65.  They will leave him at this setting and recheck how he is doing at midnight.

The steroids will be in strong amounts for up to three days.  Whether or not they work they will begin weening him off of them at that point.  This is to minimize the negative side effects that come with this drug.  We are praying 1.  That we made the right decision to use them, although it looks like we were almost out of options 2.  That God will work through this drug to give Greyson the push he needs to get off the ventilator so his lungs can heal naturally.  and 3.  That God will protect him from any negative side effects the drug may have.

So it was a rough couple days but I have to tell you how today ended (at least at the hospital, I’ll be staying up doing homework late and waiting to call in and find out his midnight blood gas).  Anyway during his 8pm care time he was VERY awake and alert.  His eyes were open and he was looking all around.  I put my face down and started talking to him.  For the first time he looked straight at me and even when he looked away came right back to look me straight in the face.  I noticed a hair (long one must have been Stacy’s as mine are……..REALLY short) coming from his lip.  I started the process of dabbing water on his lip and trying to wipe it off.  It was stuck so much that when I pulled on it his whole lip came with it!   So I spent over 5 minutes working on this and talking to Greyson the whole time.  Throughout the whole deal he kept his eyes right on me!  Even the nurse kept commenting on how intently he was looking at me.  Stacy got in there after I got the hair off and finished getting the lip goobers off and he pretty much looked at her the whole time too!  It was so great to have gone through this major stress with him de-satting, the bad gas numbers, and then to have Greyson cheer us up so much simply by looking at us intently. 

Today was a rough day, but tomorrow is a new one.  As always God continues to grant us just enough strength to make it through the day.  Thanks for all your love and prayers for us!

Well today we only got to be there for one care time because I had to get back for men’s bible study.  We went with a couple from our church and it was nice to be able to show Greyson off.  He is maintaining his temperature well and remains in the crib.  They are still trying to ween him off the vent although last nights blood gas was on the higher side.  We’ll have to see what he does tonight.  The eye Dr. came while we were there and gave him his second exam.  He tolerated it pretty well.  Basically there hasn’t been any change since the first exam.  He still has stage 2 retinopothy of prematurity which means he will need to be watched closely as his eyes develop.  As long as it stays in stage 2 no intervention will be necessary and he will develop normal vision.  If it advances to stage 3 they may have to look into doing some laser surgery to correct the blood vessel growth but that is not something we have to worry about right now.  Not really much else to say other than he looks really good in a crib!