Westfall Web

Well as usual Greyson will not be rushed.  While the surgery went great yesterday his ventilator pressure (the amount it takes to give him each breath) was pretty high last night.  Basically it was OK while he was asleep, but when he would wake up a bit it would climb higher than they want it to.  So they put him back on the muscle relaxers to keep him from moving around.  This seems to have helped and his pressures look OK.  They were still a bit high when we got here, but are looking better now (almost 6pm).  Anyway because of the high pressure and the need to give him the muscle relaxer to help the Dr felt like we should hold off on the next surgery.  So Greyson is no longer scheduled for all the other surgeries at this time.  We do not know when he will be put back on the schedule, but do know that the surgeon who was going to do it is not on next week, which bums us out because if he gets scheduled for next week it will have to be with another surgeon and we felt really comfortable with this one.  Oh well, God is in control and it is in his hands.  The hardest part is having to wait a little longer to get this part over with.

Anyway in this picture you can see a section of Greyson’s bandaid.  Basically the incision is as long as the bandaid, which is a bit longer than what you can see in the picture.  So far it seems to be doing well.  You can also see a nice quilt that was given to Greyson by some hospital volunteers.  As someone whose love language is gifts (honest it is, its a real thing read the book 5 love languages!) I fully understand how great it is to receive presents.  This is not lost on Greyson, he loves the fact that these volunteers stop by every once in awhile and give him neat things.  The other day he got a stuffed frog that plays a LOUD sound when you push its foot.  You should have seen Greyson’s face the first few times we pushed it!  He got wide eyed and looked around like, “Now what in the world is THAT!!?” 

We are so blessed by the encouraging words and prayers that you all have been offering for us.  It is so nice to know that so many are standing beside us during these trying times. 

OK Greyson has gone back to surgery, and from the sounds of it, it is over.  It will be about a half an hour now before they get him back to the room and the Dr comes to talk to us.  Then we will be able to go back and see him.  Just thought we’d keep you updated if you checked the blog.  We’ll write more later.

***Update.  The surgeon just came out and told us everything went like clockwork.  Soon we’ll get to go see him!  (although he is going to be SLEEPY)

It was only a few minutes after this picture that Greyson woke up for the day and spent the rest of the time I was holding him to look and play with me.  We played great games like, “wipe the spit off my face while I lick the tissue” and “hold the frog rattle and give it some shakes”.  Ahhh………these really are the best games.

Well tomorrow is the big day, well at least the first big day.  Greyson is scheduled for surgery at 8am.  This will be to perform the PDA ligation.  It will be an early morning for us as we have to be there before 7am as that is when they will take him to the OR.  They said that usually they wind up running a half an hour late, so if that is the case they wills start at 8:30.  It is actually a very fast procedure if everything goes well, only taking between 15 to 20 minutes.  The length of time is all about getting everything ready, doing the surgery, and then getting him fixed up to go back to his room.  While they don’t take him to a recovery room since he is in the PICU already, they will take him to his room and do stuff for a half an hour or so.  Then the Dr’s will come talk to us about the procedure, and we can go be in his room while he recovers.

I was thankful to hear how they do it since there is so much time involved, yet so little of it is the actual surgery.  We will wait in Greyson’s room and they will call us right when the surgery starts, and when it is finished.  This should help with a lot of the fears to know when it starts and is over, even if you don’t have all the details till later.  We met the surgeon today and feel very comfortable with him and of course we know that Greyson is ultimately in God’s hands and there is no better place to be.

After tomorrow we will have to wait a day or two to find out how he will recover before knowing if he’ll be ready to have the other surgeries on Friday.  This is what we are hoping for as it means we can get this all behind us sooner rather than later.  We’ll see how it goes. 

Well Stacy just got home and it sounds like she had a very good visit with Greyson.  They increased his pain medicine and he seemed to be feeling a lot better than he has the last couple of days.  Stacy held him for awhile and really enjoyed it.  We have been hesitant to hold him since he moved to Mary Bridge just because he has been so sick and it always seems to hurt him when he is moved.  I guess it was better with a little more medicine.

Greyson is on the surgery schedule for Tuesday, we are not sure yet what time but should find out tomorrow as the Dr’s will stop by sometime during the day to get us all set up.  It’s kind of amazing that after over 5 months the PDA issue will finally be resolved! 

Stacy also told me Greyson was waving his arm around a lot today.  He seemed to be looking at it and acknowledging that it was his, and he was making it move.  Not much else to talk about for today. 

Greyson is at that strange size now where his ankle bracelet is too small, and the pediatric bracelet is too big.  So for now they have it taped to his arm.  We think it makes him look tough. 

Not much to report today.  Nothing grew out of the cultures they took yesterday and his temperature seems to be fine again so who knows what the deal was yesterday morning.  We are very anxious to get the surgeries started.  Now that we have the plan it is hard to wait to get started so we can get past this phase.  I know, I know.  Patience is………impossible!  We’ll make it I guess.  Right now (I’m in Greyson’s room as I write this) Greyson is getting worked on (well suctioned, diaper change, oral care, and so on).  He’s ready for everyone to be done with him so he can go back to sleep. 

Today was my mom’ s birthday and she called in to Greyon’s room.  It was funny because he kept raising his arms as if he wanted to tell his grandma happy birthday.  Have I mentioned lately that he is an incredibly good boy?  Well he certainly is!

Wow it’s late!  Today was a long day as we spent the whole day at the hospital.  We wanted to be around to talk to the Dr’s and make sure we were in on the plan they were formulating for Greyson’s care.  They decided Greyson should have his PDA ligated so here is what we are looking at.  At this point they are talking about doing the PDA ligation on Tuesday or possibly wednesday.  Then doing everything else as soon as Friday (if they do the PDA on Tuesday) or monday of the following week.   Greyson spiked a temperature this morning so we are uncertain of what is going on with that, or how it might affect the plan but the Dr’s seemed to think he would probably be past whatever it was in time for the surgery and his temperature was pretty good all day while we were there. 

Two of his old NICU nurses stopped by today to see him, one e-mailed us to say she would be coming so we stayed there to visit with her.  It is so nice to still have contact with the nurses who have become our friends through this process.  It also worked out good as Greyson was awake from about 9 – 11:45pm so we got to interact with him and then he went back to sleep when we were leaving. 

The Dr’s continue to be encouraged by his progress (which in turn encourages us!) and we are praying that the PDA ligation will help his pressures, gasses, and everything else.  It won’t change the need for everything else that is being planned, but could help with all of it.  Well it’s late and I’m going to bed (the good news is I got my sermon pretty much finished up while I was at the hospital, which considering its friday night is a VERY good thing!). 

Greyson got to check out one of his other toys today.  He wasn’t sure about it (a common theme with new things) but was warming up to it after awhile.  If the trend continues he will LOVE it soon.

Today Greyson had an upper GI study.  Basically they put barrium (or something like that) down his feeding tube and then took pictures every so often as it worked its way through.  This is in preparation for all the surgeries he has coming.

So what does he have coming?  Well tomorrow morning they will decide for sure but most likely he will be getting a PDA ligation (the PDA is not a palm pilot, but an artery in the heart that should close at birth.  With preemie’s it often doesn’t).  We haven’t talked about this in a long time, but it is still open and they are going to talk about whether or not it would benefit him to get it closed surgically.  He also is going to get a surgery for his reflux, a tracheostomy, a G-tube (for feeding), and to top it all off he is going to be circumcised.  Sounds kind of like a lot doesn’t it?  Well it is and in fact he will not get this all in one surgery, but quite possibly in two.  They will talk with us about that tomorrow after they decide whether or not to go ahead and fix the PDA.  The other heart issue I talked about yesterday they will leave alone for now and watch.  Many times this will go away on its own, or not be a problem.  They will watch it and if it becomes an issue they will fix it then.  This is somewhat good news as that surgery is much more involved than fixing the PDA.  So Greyson has a lot on his plate right now.  I know it probably sounds bad, but it will be OK.  The challenge now is waiting to talk to the Dr’s tomorrow so we can know what the plan is going to be and which surgeries will be done in what order.  We talked to the surgeon today (actually Stacy talked to a lot of Dr’s today as she went this morning) and it was really good to discuss all the pro’s and con’s of all the different surgeries. 

Greyson’s gasses continue to be better (well the c02 was up from yesterday but overall everything is coming down into the correct range) so we are thankful for that.  He is showing improvement and once all these surgeries are over and he recovers we should be in pretty good shape.  As with any surgery there are risks but we know Greyson is in God’s hands and that He can guide the Dr’s.  So until tomorrow……….we wait.  Have I mentioned I’m not real good at that!?