Westfall Web

Today both Stacy and I held Greyson, since it will be about a week before we will be able to again.  The good news is that once we can hold him again, it should be much easier and we should be able to pick him up whenever we want to.  Greyson said he’s a little nervous about the surgery, but trusts us to make the right decisions and promises to be brave. 

Today Stacy taught him a new game today called “get your tongue”.  Basically you use a cloth to touch Greyson’s lip and when he sticks his tongue out you touch it with the cloth.  I guess he liked it, but I personally don’t think it sounds that exciting. 

Greyson’s “Big three” remaining surgeries will be done Wednesday at 2pm.  Thanks for keeping us in your prayers.  We are a bit anxious (no one likes for thier child to have surgery) but excited to be moving forward.  **This is not the official update for today, but thought some might be checking the site today and would want to know.

Well the surgeon is back and knows about Greyson, but hasn’t gotten back to us on when he will be able to do the surgery.  So it doesn’t look like it will be tomororw like we’d hoped.  We’ll keep you posted but are hoping we can get it done soon so we can get past the recovery period and move on.

Part 2

Our little leprachaun wishes you a Happy St. Patty’s day.  He has enjoyed his, giving out a few pinches but not receiving any himself.

Sweet Greyson was snoozy and cute all day.  He did wake up and play for a little bit but I guess “get Mommy’s nose” isn’t quite as fun as “get Daddy’s nose” as judged by his reaction.  He did however enjoy a personal serenade of every kid song that mommy could think of.  We haven’t been noting it each day but we are using the many wonderful suggestions for songs that you all have suggested.  Greyson really does respond to the singing and it is a joy to have him so engaged with me when I am holding him.

The doctor came in today and said he was pleased with Greyson’s progress this week, he hadn’t anticipated it being so good when he started out on Monday.  He had his vent rate turned down another little bit and even had his oxygen requirement reduced today.  We are praising God for positive steps forward.

Greyson was being a bit of a pill while his mom was holding him tonight.  When the RT was in the room, he was doing great.  Then she would take off her gown (Greyson is on what is called contact restriction so they have to put on a special gown and gloves before they come in his room so he doesn’t pass any of his bugs to other patients) and within a couple minutes of her leaving, he would set off his alarm on his vent.  Nothing serious, usually he was just coughing and moving around.  The funny thing is it would bring her back and he would keep alarming till she put on a new gown and new gloves and came in and by the time she would do all that, he would usually settled down and stop alarming.  I think someone really likes to be the center of attention! 

Today was another good day, not as good as yesterday as he slept for most of it, but it was good.  We saw a couple friends from the NICU while having dinner and enjoyed visiting with them, and then one of the nurses from the NICU came up when her shift was over and visited with us.  We are so glad that while we technically changed hospitals, it is still connected and we can still see our NICU friends from time to time.  They will forever have a special place in our hearts and we will make sure that Greyson hears LOTS of stories about them.

Today while playing our old standby game, “Touch dad’s nose” we really think Greyson was starting to get the hang of it.  He really acts like he is trying to figure out how to move his hand and arm in order to touch my nose.  One time when I had shifted off to the side he looked like he was intensly trying to get his hand to move, but unable.  Finally he jerked and just started waving his arm all around, finally hitting my nose in the process.  It was very funny and a proud moment for us.  He has a way to go but seems to be slowly figuring this out.  This is probably complicated by the fact that one of the sedative drugs they are giving him wipes out short term memory.  So he would probably be playing the professional version of the game, except he has to somewhat relearn the game everyday.  This will all change once he recovers from the next round of surgeries and can get weened off some of his drugs.   Well church is coming early tomorrow (yes I do understand that spring forward was last week, but it’s late!) so sleep well everyone.

Greyson had another good day today.  He was very alert and active today.  In fact, the two of us got scolded by the nurse for playing too much and getting Greyson all worked up (he got so excited he started coughing a lot and setting off alarms).  We weren’t really in trouble, but it was kind of funny anyway.  He continues to show improvement and we are so thankful that he is starting to act like the boy we know and love.  Till tomorrow, good night all.

Today was a very good day for the Westfall’s.  Greyson continues to improve after his “episode” earlier this week.  His Ppeak pressures (the pressure required to give him a breath) were really good all day.  His blood gas was good (I almost guessed his gas perfectly.  I guessed 7.41 on his ph, it was 7.42.  I guessed a c02 of 56 and was right on the money.  I also guessed his bicarb would be 36 and it was 37.  Not to bad if I do say so myself!)  They turned the rate down a little on his vent and he was still doing great so we are very pleased with his progess.

As you can see from the picture Stacy held Greyson for a few hours tonight.  He slept most of the time but I’m sure he enjoyed the quiet time with his mom.  We stayed extra late tonight because we had to attend med school.  Tonight we learned how to properly put on the gloves and  use a suctioning catheter.  It’s not to difficult, you just have to make sure you keep it sterile which is the hard part.  The RT said we did well.  This is the first in a whole bunch of things we will have to learn and become proficient at (and checked off on) before they will allow us to take him home.  Once Greyson gets his trach, we will begin full time med school (not literally but they say it will feel like that as most of our time visiting will be used to teach us to care for him).  We are a bit anxious but excited to be at a place where we can begin doing something to help with his care, and doing things that will lead to him coming home! 

Greyson had a pretty good night and did much better today.  His 02 requirement was down to 35 percent which is the lowest he’s been since being put back on the ventilator.  The Dr. today let us look at his chest X-ray so I feel better now that my medical school training is catching up to Stacy’s.  Now I just need to bag him and we’ll be even.  Well I guess she now mixes his milk up for him and puts it on the pump, but in a way that is like cooking and I don’t want to get into that!

The Dr. said Greyson had an Atelectasis episode the other day, which is where part of the lung collapsed or was without air.  This is probably why he was requiring so much oxygen the other day.  As far as the infections, well it looks like he has bugs (we all have some bacteria lurking within us, ready to strike when they see an opening) but they are not causing infection.  It will be a couple more days before we’ll know for sure.  In the meantime they will keep him on the antibiotics they are giving him as a precaution.

So I had to have a talk with Greyson today to clear up any confusion he might be experiencing.  Every night we say our prayers and pray that Jesus will watch over him.  Well last night and tonight Jesus has really been watching over him.  Confused?  So was Greyson.  You see the night nurse he had last night and has again tonight is named Jesus.  So Greyson was a little confused about why we prayed to Jesus after he had just left the room.  Don’t worry I told him all about how Jesus is and was a common name.  Then I explained that  the Jesus we were praying to was God’s son but when I got into the whole incarnation thing and how Jesus (Christ, not the nurse) is fully human and fully God I think I lost him.   We might have to slow down his theology lessons a bit, but overal he tracks pretty good.   

Both Stacy and I held him today which was a lot of fun.  Stacy didn’t get to hold him too long because he started de-satting.  We are pretty sure he has a full belly and needs to work it out so he can get more comfortable.  Other than that he did really well today.  The song of the day was You are my Sunshine, thanks Corinne for that suggestion.