Westfall Web

Today was one of those days that had both good and bad about it.  I wasn’t there for the majority of the day as I flew to Nampa last night for my grandfathers funeral today.  It was a nice service and it was good to see family I haven’t seen in a long time.  Anyway Stacy told me that Greyson was requiring a lot of oxygen today, up to 60 percent, and was having trouble keeping his stats up.  She also got to look at his chest x-rays (something I’ve asked to see, but always with the tag line “only if its no trouble”  how funny that it finally was no trouble when I wasn’t there!) and his 4am x-ray looked pretty good, while his 3pm one looked worse.  Greyson is still fighting off one of his infections that is a bit more resistant to the antibiotics.  He was coughing a lot today and they suctioned a lot of junk out of his lungs (this is positive as it means he was working it out).  So none of that was very positive. 

What was good, although it’s hard to see in the picture, is that Greyson got another echocardiogram today.  The technician had a tough time measuring his pulmonary pressure because I guess they measure this by seeing how much flow goes through a little valve that we all have.  Well Greyson’s just kept clamping shut and they couldn’t see anything.  The Dr. said it was great that Greyson’s valve worked so good, but bad cause they couldn’t get a reading.  Well they kept working at it and finally got a reading.  They said that he was less than 1/3 systemic.  Saywhatmic?  OK so on this blog we talk about pressures a lot (especially since he’s been back on the ventilator).  The ventilator pressure shows how much pressure it takes to give him a breath.  Pulmonary pressure measures how much pressure there is in his lungs verses his blood pressure in his body.  The pressure in your lungs is far less than your blood pressure (something like less than a quarter).  Anyway when Greyson was first admited to the PICU he was super systemic (the pressure in his lungs was actually higher than the rest of his body).  NOT GOOD!!!  Now he is less than 1/3 systemic which is good for a child with chronic lung disease.  YES!!  The other fantastic news is that Greyson’s heart has shown improvement.  You may recall his heart has enlarged due to the extra work it has had to do.  Stacy said the Dr basically said before he would have called Greyson’s condition moderate or more, but now would clasify it as strictly mild.  This is a huge relief as this is an area that needed to get turned around.  Thank you Lord!  They also raised his peep on his ventilator back up to 6 (a few days ago they lowered it to 4) and that seemed to be keeping his stats up for the rest of the day. 

So we stopped by the hospital and visited with Greyson before coming home.  He was wide awake and moving his arms around quite a bit (something he really hasn’t done much of lately).  He didn’t look fantastic, but really cute and not bad at all.  Hopefully the antibiotics can kick this infection so he can get even better.  As far as we know we are now 1 week away from the other surgeries, which hopefully will offer great improvments in how he feels and acts.  Thanks for everyone’s support and prayers, you all are a great encouragment to us!

Today’s song of the day was “Twinke twinkle little star”.  When I sang it Greyson got a very worried look.  Perhaps I was a bit off key???  Nahhhh  must have been gas.

Greyson learned that famous baseball ballad today in honor of his new outfit that features a baseball mitt (thanks Cathy).  Both Bob and I sang it with him throughout the day and I think he is ready for his solo.  We are trying to think of more fun songs to sing each day so if you have any ideas send them our way.  We got daddy off to the airport and Greyson and I have been sitting here holding hands for quite some time.  Mommy gets to stay over tonight and I am really excited to spend the whole day with my little man.  He was a lot more comfortable today as they raised up his sedation a little bit.  The nurses and doctors are doing an awesome job keeping Greyson comfy as we wait for the big day.

Stacy said that today was an OK day, but that Greyson didn’t seem to be feeling all that great.  They are attempting to ween him off of his pain meds, and it seems he is responding as someone who really likes his pain meds.  So they have started him on a couple new ones and will work to decrease the amount over the next few days.  The goal is to get him backed off of these drugs so he doesn’t build up anymore immunity to them.  That way when he has his next surgeries, they can give him these drugs again without upping the dosage.

That’s about all I know from today.  Not much happened other than Stacy trying to keep him calm when he would start to get upset.  Oh, Stacy also bagged Greyson for the first time today.  In case you are unclear, bagging is the term for when you unhook him from the ventilator and use a hand device that is hooked to oxygen to push the breaths in for him.  He wasn’t requiring bagging, but since it is something we have to learn before he comes home she got to start practicing today. 

Today turned out to be a great day.  Why?  Well Greyson woke up and played with us today.  He hasn’t been awake and interacting with us since his PDA ligation, so it was great to have him wake up and play with us.  Today we played “get dad’s nose” the advanced version.  It was great!  He definitely has a strong personality.

He continues to show some improvement.  Nothing major but seems to be back to where he was before his PDA ligation, so we are excited about that.  They are decreasing the amount of sedation he is getting, which makes him more able to interact with us.  They will work on this for awhile but probably won’t take him all the way off till after his next surgery.  Following that surgery he will be out again for about a week in order to ensure everything has time to start healing up before he is moving around much.  We are praying that his vent settings will continue to improve as we wait for the surgery, and that he will recover quickly after it is over.  Today was good evidence that the rest of the week waiting for surgery will at least be full of play times.  These make waiting bearable as there is nothing like looking into Greyson’s eyes and having him interact with you.

Well I’m off to pick up dinner.  We are eating out/in since the cafeteria is closed today for a scheduled power outage. 

I had to work at making peace with Greyson today.  While I stayed in and watched the procedure, I didn’t stop them from performing the circumcision, and as you can see he was not pleased with me.  No really he did just fine with it and wasn’t upset with me (well as far as I know anyway!).  So two things down three to go.  He will now get a 10 or so day reprieve before the next surgery. 

His pressures were pretty good today so they took him off the muscle relaxers.  This means he can move around.  Unfortunately twice he got upset while they were suctioning him and held his breath until he turned purple.  Haven’t seen that color in awhile and don’t care to see it.  They bagged him and he came right back up, somehow we just have to help him find better ways of voicing his feelings.

His blood gas was higher this afternoon for some reason, his c02 was 64.  I say that because I haven’t been giving his c02 numbers in a long time so I thought I’d throw one out.  His ph was still in range and this is the first time his c02’s have been above 60 in several days.  For the most part he has settled into the 50’s quite nicely.  Since he was still heavily sedated and most of the day he was on the muscle relaxers he didn’t wake up or look at us today.  Hopefully he will have a great night and will be more interactive tomorrow.

Due to the fact that Greyson is heavily drugged, he tends to drool a lot.  It’s kind of funny at times.

Tonight Jaemi (one of Greyson’s old NICU nurses) came and brought us dinner.  She actually came and sat with us on Tuesday while we waited for his PDA ligation to get over with.  Then she offered us dinner tonight since we thought Greyson would have his other surgeries today.  Well even though they were canceled, she still brought us dinner.  A home cooked meal at the hospital, it was awesome!!

Greyson’s pressures are better today and the Dr said during rounds that he had really showed some improvement over the last 8 hours or so.  The new plan is to back off the muscle relaxer drugs tomorrow and see how he does.  Hopefully he can get off these soon so we can interact with him again.  While on these he is essentially paralyzed.  He can twich a little but that is about it.  Not so much fun for the parentals.

Anyway he will also get circumcised tomorrow as long as he is continuing to do well.  As far as the rest of the surgeries go, they are going to wait till week after next.  This should allow his lungs to heal and strengthen before the next round of big surgeries.  While that adds another week to the waiting for the surgeries, it does mean we will have the surgeon that we like so that will be good.

On another note, we talked to the discharge nurse today about some of the going home stuff.  This is still a long ways off, but it was nice to actually be talking for real about it!  She was absolutely amazed at our insurance and said that she had contacted a home nursing company and it looks like that whole process should go fairly smoothly when we get to that point.  Again this is still awhile out, but it was nice to be actually working on some of the details to bring him home!

So nothing much to report, his lungs continue to be fragile but he is doing better.  A week and half and he should be ready to get these other surgeries over with and work on getting his settings down so he can come home.

It sounds like some (well at least one) missed the post about Greyson last night because of the second post we put up called reflections.  I’ll try to remember to indicate when there are two posts in a day.  The newest one is always on top, but that doesn’t mean that there isn’t another new one right under it.  Always good to scroll down and make sure you’ve read the next one down.  Just thought I’d throw that out since there is important info in the post under reflections that I don’t want anyone to miss out on.

Tonight Stacy and I have been reflecting a lot on the last 6 months, as well as on life and death.  My grandfather is not doing well and will probably not make it through the night.  This coupled with Greyson’s situation has given us a lot of time to think, talk, and reflect on things.  Tonight we were talking about how difficult it can be to offer words of encouragment to people who are facing lifes challenges.  We are thankful to all of you who work so hard to encourage us.  So where is God when there is pain, suffering, and death?  It is funny how we often try so hard to minimize the situation, or to offer up a reason for what people are experiencing.  If we’ve learned anything from these last few months it is that there often is no explanation, or a way to minimize the pain, anxiety, or struggle. 

While that sounds depressing, the fact remains that there is a lot of truth to it.  Now having said that, we also have to say that there is more to the story than that.  For whatever reason God doesn’t always provide easy answers.  He doesn’t always make the situation better.  Yet if you trust him, really trust him, he will always be there.  As you cry out to him with your questions, pain, anger, he will begin to speak to you about his profound love for you.  I’m often suprised that in these conversations he does not always (or even often?) provide any answers.  He simply lets you know that he is there, that he loves you, and that he is hurting right along with you. 

It is true that he is powerful enough to work an instant miracle and dramatically change any situation.  Part of trusting him is knowing that he has a reason for not doing so in every situation.  He is God and I am not.  So we can cry out to him, and accept that whatever the outcome, he is still a loving God who is worthy of our trust.  Our prayer tonight is that everyone who reads this can experience the awesome wonder of knowing this kind of love.  It gives you untold strength when you have none left, gives you hope when the world looks dark, and even makes you laugh in the midst of it all.

Sorry to get long winded, but hey, I am a pastor!  🙂