Westfall Web

Yesterday I forgot to talk about prayer time.  Greyson and I took some time to pray for his old friend Sebastian.  It was really sweet.  Actually Greyson let me come up with the words and he pretty much just prayed a prayer of affirmation along with mine.  He did fold his hands (with help) for the prayer.  I haven’t commented on Sebastian as I haven’t seen his parents in awhile.  We saw them yesterday, which was a big day for them.  Sebastian had surgery to take out his temporary brain shunt and put in his permanent one that drains into his stomach cavity.  The surgery went well and Sebastian seems to be healing well.  Today we were told that Sebastian’s heart appears to be OK so we are praising the Lord for the good news. 

OK back to Greyson.  Well not a lot to report today.  His c02 was 70, not great but there was improvement in some of the other numbers that make up his blood gas.  Part of those numbers are measures the acid level of his blood and it was better so the drug they are giving him to get his system balanced out seems to be working.  We’ll see what tonights numbers are.  He slept for most of the time we were there, and worked himself into a frenzy a couple times (which led to signficant de-sats and the dreaded blue color we are not fans of).  Some of this was gas, some of this was probably reflux, and some of it was probably attitude!?  The strange thing is you can now tell pretty easily when this is going to happen.  As he gets really upset he turns red.  If this redness turns a bit more purple he’s starting down a bad path.  Well since he has no oxygen reserves if he won’t relax and breath he will have a major de-sat.  If his oxygenation falls below 60 he just doesn’t have enough to bring himself back so he has to have extra oxygen to help him.  The challenge is knowing whether or not he has crossed the line before he settles down and starts breathing.  A couple times today he needed extra oxygen.  A couple times he did it himself.  We are working on enrolling him in a new class entitled “no matter what, you still gotta breath”.  Basically this class (which I hope you realize is a figment of my imagination) teaches kids that when you are passing gas, you still gotta breath.  When you are upset and screaming, you still gotta breath.  When you sleep, eat, poop, reflux, have a shirt pulled over your head, or any other thing you can think of, YOU STILL GOTTA BREATH!  We are hoping he gets enrolled soon as there is nothing like early education!

This picture is actually from yesterday as we didn’t really get any good ones from today.  So what can I say about today?  Well not much.  Greyson’s c02 was 72 last night so you all know there were some problems.  The Dr. changed Greyson’s DEX order to Q12, which means he will now get the steroids every 12 hours.  Basically this wasn’t a direct result of the bad c02 last night, but due to the fact that Greyson doesn’t seem to be progressing at a good rate. 

The truth is the longer this goes, the harder it gets.  Of course we are happy and thankful for his progress, but the cumulative stress  of it all is definately taking its toll.  While ours is not in trouble, I can see why situations like this destroy many marriages.  I pray almost daily for all the other couples that are in the NICU that God will work in their lives as they walk through these difficult days. 

Grammie Jo and Stacy apparently allowed Greyson to sleep today because he woke up for me while stacy took Joanne to the airport.  We played games like “open your hand and then grab my finger” (both right and left handed versions of this game).  He did really well with his oxygenation the whole time, and spend a long time at 28 percent oxygen.  This is the first time he’s been below 30 percent oxygen on the canula ever.  That’s a good sign I think.

Today while I was holding Greyson and he was getting some tummy time in he decided to reposition himself.  At first I thought he was going to start screaming as he pushed himself up and arched his back.  Then he moved his arms a little and slowly rested his head down on his arm as seen in the picture.  Then he simply fell back asleep.  He stayed like this for over a half an hour and even when disturbed he would simply raise up again, reposition a little, and rest his head back down on his arm.  I guess he needed to have his head propped up! 

Grammie Jo and Stacy went in early today and had a great time playing with Greyson.  Apparently they wore him out because he slept the whole time I was there, with the slight exception of waking up for a diaper change.  I guess they were playing bicycle with Greyson’s legs.  I guess he liked it and it really seemed to help with his gas (ummm…not the c02 kind).  His gas was quite the problem tonight.  It was so bad that he may have made one of the nurses sick.  I wonder if insurance pays for an air purifier………?

They did a gas last night at midnight and Greyson’s c02 was down to 62.  Hopefully tonights will be good as well and soon his gas will remain good while he is on the canula.  He did pretty well I’m told when they put him back on cpap tonight, only getting upset for a couple minutes.   Stacy said he started looking at his mobile and once he gets tuned into that everything else seems unimportant to him.  They also read him a story but had to stop half way through because they thought he was getting over stimulated.  They said everytime they turned the page he got more wide eyed and they were afraid his eyes might pop out of his head!  He really is interested in looking at things and stares at them very intently.

God is so good to us and we have been so blessed through this whole experience.  Unfortunately not everyone has a happy ending when they enter this type of situation, so we thank God every day for allowing us the opportunity to spend time with Greyson.  While we are so thankful for every moment we get to spend with him at the hospital, we are still praying fervently for the day we can bring him home and spend even more time everyday with him.  God has a plan in all this and we are doing our best to be patient (not my strong suit) and alert so we don’t miss any moments he has for us.

OK I thought this picture was extremely funny but couldn’t quite come up with a caption for it, any ideas?  Here are a couple I came up with:

1.  Mom, did you see my cool mobile?

2.  OK mom, but then can I go play?

3.  Are you sure?

Today was a fantastic visit with Greyson.  Stacy called in the middle of the night and found out his c02 was still at 66 (up one point from the night before but below 70 which we can live with!).  When we got to the hospital he was asleep but soon woke up and played with us for about an hour.  We gave him another bath today and just had a wonderful time with him.

So what made this a fantastic visit?  Well the first was that Greyson got some nasal canula time again today.  He has been restricted to the cpap since Saturday for having such high blood gas numbers.  Today he got to be on the canula from 2-6pm.  That was good but what really made it a great visit was the fact that while he was on cpap he was only requiring 21-24 percent oxygen (we breath 21 percent in case you forgot!) and on the nasal canula he was only requiring 32 percent.  This is significant because when I last saw him on thursday he was needing 30-33percent on cpap, and 40-45percent on canula AND he was having trouble keeping his oxygenation level up.  Today he did this and barely set off his alarms all day.  This made for a nice visit. 

Of course it wasn’t perfect, they ran his gas at 6pm to see how he did after 4 hours on the canula.  His c02 was 75.  Not what we hoped for but the encouraging thing was that his blood gas showed improvement in other areas (I only report on c02, but the gas consists of a lot more complex stuff.  So things like his ph was better which is good even if his c02 number wasn’t).

This is significant because what they think happened last weekend was that the diuretic drugs they were giving him caused his body to become to acidic.  This caused his body to actually retain c02 in an effort to help correct his metabolic acidosis.  It’s all very complicated but basically his metabolism was messed up so he was keeping the c02 in his system.  So the drug he is on now helps him decrease his acid level which should help him release excess c02.  He is very fragile and it is difficult for the Dr’s as they give him drugs to try to help one area can cause another area to go out of wack. 

On a slightly different note Shaun has put a link together for easier viewing of all the pictures.  You can access it by going to (http://westfall.raquet.net/GreysonWestfall/Greyson%20Westfall.html) Enjoy.  Shaun also was also able to pull up the statistics for this web blog, it is averaging 100 hits a day!  I must say that was very shocking.  Thanks for reading everyone it’s nice to know you care!

I wasn’t there but by looking at the picture Greyson must have spent some time explaining his breathing treatment to Stacy today.  He’s getting smart and it looks like he is almost ready to administer the inhaler himself!  Stacy told me today was a good day.  Greyson loved his mobile and would look at it so intently he didn’t even get upset with his care.  His gas was better last night, c02 of 65 so we are thanking God for working to bring those numbers down. 

Greyson was very very alert today when Stacy and Joanne got there.  They say he was very calm and played with his fingers as he looked around at everything.  They also tell me that he is noticably less puffy today so the diuretic seems to be working good.  Of course there is the visual side, and then the technical.  One of Greyson’s diapers weighed 138 grams!  So the diuretic is REALLY working!!  We are so thankful for the great nurses and DR’s who work so hard to keep him doing well and comfortable. 

It’s been a long three days and I can’t wait to see him again tomorrow!

Today Greyson got his first bandaid right on his tiny little finger.  He had a little owie because he tore his fingernail a bit.  That really smarts and he let us know about it right away so it could be fixed.  After getting the bandaid he had quite a time showing it off by waving his arms in the air.  He had another great day with his Grammie there and got lots of snuggle time in.

We had one person make a guess at the grams milestone mentioned in the last blog.  Way to go KJ for looking up the conversion chart on the internet.  I forgot to mention that Greyson was on the high side of 8lbs 13ounces which was just breaking the 4000 gram mark.  Many of you may remember that he entered this world at just 700 grams.  What a long way he has come.

The numbers report tonight is not as good as the visit report.  Greyson’s Co2 was 83 at midnight and 86 at 6 am.  He also had another 83 at noon today.  The docs are trying a different diuretic and have increased his steriods.  He will get a short burst of a higher dose today and if he responds will go back to a lower daily dose.  My mom and I could see a marked improvement in his appearance today between the morning and 4pm when we left him.  Hopefully the change will be effected on the inside too.

Also,  check out yesterday’s comment page.  Our blog benefactor Shaun has compiled a page of just the photos in the order that they were posted.  There is a link to that page in the comments section.  Very cool Shaun! 

….Greyson gets spoiled by Grammie today!  

Greyson had a wonderful day with mom and Grammie Jo.  He spent a great deal of time looking lovingly at his Grandma as if he knew that she would be the lady to fulfill all of his toystore dreams.  Greyson spent a long time awake today and it seemed that no matter how we tried he just couldn’t be coaxed to sleep.  He was so cute with droopy eyelids that kept shooting back open.

I’m not as good at the technical side of the report as Bob is,  guess that is the difference between a mom’s take on something and a dad’s.  But for those of you who follow the numbers I guess you will want to know the Co2, which was 72 last night.  There was no guess at why it was so high from either doctors or nurses.   He was started on a new med today which I think is a different kind of diuretic.  Hopefully that will dry out his lungs a bit.  Also his weight was 8 lbs 13 ounces.  He just passed another milestone in grams, but I’ll let you all figure out what it is.  Grammie and I are looking forward to another great day tomorrow!