Westfall Web

2 Corinthians 1:3-11
3 Praise be to the God and Father of our Lord Jesus Christ. God is the Father who is full of mercy and all comfort.4 He comforts us every time we have trouble, so when others have trouble, we can comfort them with the same comfort God gives us.5 We share in the many sufferings of Christ. In the same way, much comfort comes to us through Christ.6 If we have troubles, it is for your comfort and salvation, and if we have comfort, you also have comfort. This helps you to accept patiently the same sufferings we have.7 Our hope for you is strong, knowing that you share in our sufferings and also in the comfort we receive.
8 Brothers and sisters, ? we want you to know about the trouble we suffered in Asia. We had great burdens there that were beyond our own strength. We even gave up hope of living.9 Truly, in our own hearts we believed we would die. But this happened so we would not trust in ourselves but in God, who raises people from the dead.10 God saved us from these great dangers of death, and he will continue to save us. We have put our hope in him, and he will save us again.11 And you can help us with your prayers. Then many people will give thanks for us—that God blessed us because of their many prayers.
Thank you for continuing to support our family with your prayers, we are truly blessed by them.

Not too much to report on from the Westfall’s. Greyson continues to get stronger and is doing well. Unfortunately his vocal cords have not shown any sign of returning at this point. Some have asked about their paralasis and while we don’t know exactly what happened it is most likely that the recurrent laryngeal nerve (nerve that sends signals to your vocal cords) was somehow traumatized during surgery (it could have been cut although this is very unlikely). If it was cut the paralasis would be permanent. If there were just damaged or traumatized a little there is reason to hope they can come back.
Thank you for praying with us that they will return their function, and do so soon! Vocal cords are instrumental in much more than simply speaking. They protect our airway when we swallow, allow us to build up pressure to cough, and help keep our lungs slightly inflated when we exhale (ever had the wind knocked out of you?). So Greyson is no longer allowed to eat or drink anything by mouth as the risk of him aspirating is just to great.
His breathing continues to be noisy, although his oxygen levels are staying up pretty well. The noisy breathing is very concerning as it could be evidence that his vocal cords have moved together some. Normally our vocal cords open and close with every breath. Greysons have been stuck open allowing him to breath. If they are closing, but not functioning, they could cut off his airway and he would not be able to breath. This is something we are keeping a VERY close eye on as you can imagine. Unfortunately if his vocal cords close too much he will have to have another tracheostomy placed. Please pray with us that we do not have to go down this path!!
Everythign I have heard or read about the return of function for vocal cords says it can take anywhere from weeks to months. While this is encouraging in one sense we really don’t want to have to wait months to get this cleared up. Our prayer is that God will return complete function of his vocal cords within this week. Would you pray with us?

After looking at this picture I found myself saying something we’ve been hearing from Dr’s, nurses, and RT’s all week. “I can’t believe how big he’s gotten”!!
Well we are praising the Lord tonight for his goodness to our family. We were able to get home today a bit after 1PM and are so happy to be back home. Greyson instantly crawled over and started playing with his toys once I sat him on the floor. To say that he is happy to be home would be an understatement! He is pretty much acting like our child again and we couldn’t be happier about that.
I do have to say that with his return to normalcy it has made his vocal cord paralasis much more heartbreaking. See up to this point, he hasn’t really tried to talk. He has cried, which comes out as just a raspy hairball kind of sound, but not really talk. Today he has been “talking” and it just kills you to see his mouth move but no sound come out. OK well sometimes there is a faint whisper but there is no voice whatsoever.
Now I don’t want to be a downer, we are incredibly thankful for where we are. I also have to tell you that once we got home we all laid down in mom and dad’s bed to take a nap and Greyson whispered “daddy” so very softly, yet clear as a bell. It will no doubt be one of those precious memories that I lock away to remember forever.
We serve an amazing God and my prayer tonight is that the God who could give a voice to a donkey, will restore the voice of a little boy so that the boy may grow up and use his voice to glorify God each and every day! We also pray that in the meantime God would protect Greyson’s airway while his vocal cords are unable to do that job.

Not sure why but I can’t seem to rotate this picture. So everyone turn your head sideways today.
Greyson had a great night and has not required oxygen since yesterday morning (Sunday). He continues to suffer from a bit of withdrawls as the narcotics get completely out of his body. So he has not been very active, playful, or frankly happy yet. That said we did get a couple smiles out of him today and he is continuing to slowly get back to himself.
His vocal cords remained paralyzed but his surgeon came in today and looked at them (to do this he sticks a camera up Greyson’s nose while he’s awake with no medicine, Greyson was not a Dr. Boseley fan today!). We were all encouraged by the fact that their seemed to be some movement. At this point everyone is hoping that Greyson’s vocal cords will “awaken” on their own, although it is not uncommon for this to take up to a few months). We are praying God will touch them and he will soon be using his voice to praise God for his good work in his life.
So the plan is for us to hang out at the hospital for one more night, then head for home in the morning! Our only concern now will be that Greyson’s risk of aspiration will be higher due to the fact that his vocal cords do not close and open as he breaths or swallows. This means his airway is not as protected as it would be if they were functioning normally.
Anyway we are so grateful for the prayers that people are offering on Greyson’s behalf, we serve a mighty God who is not alarmed by this “complication”. We know that the God who began a good work in Greyson’s life will be faithful to carry it to completion. Greyson is God’s child and we rest comfortably (though at times with a little bit of anxiety) knowing God is at work in his life and body.

OK so I’m behind in updating yet again. Someone should dock my pay. Or maybe start paying me….one of those would surely help!
So here is the update. Friday they took Greyson into the OR to take a look at things. The plan was to go in and look, then bring him back to the PICU (Pediatric Intensive Care Unit) on a ventilator. Well as it turned out they took a look and brought him back to the PICU without the ventilator. They ended up putting him on a really fancy bi-pap machine to help him breath. After being on that for a short time his oxygen saturation fell and they were having a hard time getting them back up. They were finally able to get them up and I was able to head to Bremerton for our children’s ministry movie night. As I left the movie night to come back to Tacoma I got a phone call from the hospital telling me they had to put him back on the ventilator. The reason for this was that he was not awake enough to breath on his own.
Normally this might not have been such a big deal, but they had discontinued the medicine to paralyze him so it was a bit of a mystery. Well things got pretty bad that night. I arrived at the hospital around midnight and he was struggling to keep his oxygen level above 88 percent, even though he was on 80 percent oxygen. I talked to the RT and was telling her, and primarily Greyson, that this was not going to cut it. The RT told me that while she agreed that we would like to see Greyson do better, earlier he had been on 100 percent oxygen and was struggling to keep his sats above 78 percent, so I should cut Greyson a little slack since he was moving in the right direction. We also learned the next morning that his co2 level had climbed to 120 (this number, you may recall from forever ago, should stay below 60 (35-40 is a good number).
OK so finally he got his level up to 90 percent and I went to the parent apartment to give Stacy some medicine (she’s been a bit sick). We went to sleep and called around 7:15AM to hear how things were going. Things were better and they told us they were talking about extubating him (taking him off the ventilator). Whoa….I rushed over to the hospital (Stacy stayed away to make sure she was not going to spread anything to him) and right after I was there they did extubate him. Yesterday he was very sleepy and weak but only required around 2 liters of oxygen.
Today (Sunday) he came off oxygen and was transferred to a regular room, out of intensive care! He is still not himself but is getting more alert and stronger all the time.
Apparently what happened on Friday was the paralytic drug they had been giving him all week was still built up in his system and while they had DC’d it (discontinued) earlier in the day it was still seeping into his system as his body worked to metabolize it all. Then when they took him to the OR they had to sedate him for that. This all became too much for him and he was unable to breath until they put him back on the ventilator. At that point he was doing so poorly that it took awhile for everything to get going again.
So he made it through everything and is breathing really pretty well. We are a little concerned he may be suffering some withdrawals from the medicines and they are working to figure out what we should give him and how to do that to make sure we don’t create any new issues, while helping him as he gets these drugs out of his system.
Now for the bad/scary part. Greyson’s vocal cords have not been moving like they should when they went in to look. This could be explained by a lot of things but even now he cannot make any noise. It would appear that his vocal cords are paralyzed. The question now is whether this will be permanent or is just a temporary consequence of all that has happened this week. Please pray with us that God will touch his cords and restore his beautiful little voice so that he can use it to proclaim how great our God is.
Well I guess that is about it for now. Since the news about his vocal cords is depressing, (we know God is not suprised by this and is still at work, but it is still VERY VERY hard for his parents) we will include a video from before surgery as encouragement. This video was taken in June and shows that even finger foods are better with utensils!!

OK so I’ve decided to post a picture of Greyson so people can see his chin to chest sutures. While they are not exactly pleasant, they look less scary than what we had come up with before seeing them. So if you don’t want a closer look feel free to not click on the link to the picture below. I just have the link posted for those who would rather not see it. That said I feel it is better than leaving some of you with your own imagined image.
Greyson has been doing well since they put the new ET tube in on Tuesday. It is still a bit of a struggle as the tube sits VERY close to his Carina (place where the trachea splits before going to each lung). This hasn’t been a huge problem, but is a little tricky. Guess that is why we pay the intensive care people such big bucks to take care of him! The reason they have to keep the ET tube so close to the Carina is because they want to keep the cuff (basically a water balloon that surrounds the ET tube) to be below the anastomosis line (where they sewed his trachea together). Anyway just wanted to type this in largely so I would remember the medical terminology later!
Greyson’s blood gas (haven’t heard about those in a long time have ya!) was good this evening and he is resting peacefully for the most part. They have him heavily sedated and paralyzed so he can heal. Tomorrow they will begin taking him off the paralytic meds and allow him to “wake up” some so that he will be more awake when they take him in to the OR for a look. This is important because they want to see how his vocal cords are moving, since they were not moving well on Tuesday. Anyway we are nervous and excited to know what the report is tomorrow as it should paint a much better picture of where we are at and what we need to do in order to move forward.
Thank you for keeping us all in your prayers.
Greyson chin to chest sutures

Well yesterday ended up being a pretty busy day. Greyson’s ET tube was damaged somehow and because of it they needed to make some change. Since they don’t want to mess with his surgery site the plan was to take out the breathing tube and see how he did, hopefully leaving it out and Greyson off the ventilator.
Unfortunately Greyson wasn’t ready for that and they had to put him back on a ventilator. The dr. said the actual surgery site looked good (place where they sewed the two sections of his trachea together) but his upper airway was causing some problems. At this point there is no way to know what is going on, as we shouldn’t have been in looking this close to surgery. Had the ET tube not been damaged we would not have gone in for a look until Thursday, Wednesday night at the very earliest. So it is possible that these new “problems” are a result of the medication he has been receiving to keep him paralyzed, a result of swelling from the surgery, or some complication from the surgery. We just can’t know so it is not worth worrying about at this point (not worth worrying about, but definitely something worth praying about!!) So the plan now is to keep him comfortable, basically paralyzed, and healthy so that he can continue to heal. Friday night we will go in and take a look and see what how things are doing then.

OK so I’m getting really bad with our blog here. I apologize and will seek to do better! Anyway Greyson had surgery today, Monday, to resect his trachea. As you can see he came dressed for success. Basically they went in and cut out about an inch and a quarter of his trachea. This included part of his cricoid ring (if you know what that is) and all of his trachea from there to below where his trachesotomy tube was. They then sewed these two sections back together.
Everything went well and Greyson is once again trach free!!! Now we have to wait and see how things heal. Since the surgery went well there are two primary issues we have to wait and see about. The first is if there was any damage to his vocal cord nerves during the surgery. This is not expected but because these nerves run along the back side of the trachea there is always a chance this could happen (again we don’t expect this, and have amazing surgeons but still have to wait to hear him talk to know for sure). The second complication that could develop is that the scar tissue which will develop grows to much into his airway and blocks his airway once again. While this could happen it is not expected either. We also know that God is in control and believe that Greyson is going to heal nicely and we are going to be able to move foward trach free!
Currently Greyson is resting pretty peacefully. He is on a ventilator and will be until Friday to allow his body to heal. Once they take him off the ventilator we will have a better idea how things are healing up. Thanks for keeping Greyson, and his parents, in your prayers!

Here is a video we took last night showing Greyson learning to give himself his “puffers”. Won’t be long and he won’t need mom and dad for this anymore!

So we really have been busy this summer, doing lots of fun stuff! Unfortunately we have not been good about taking the time to keep our blog updated (bad us bad!) Anyway I was just getting Greyson’s food for his last feed and sat down at the computer to look through some pictures when I came across this one from VBS. I know I haven’t posted anything from VBS yet so here is a picture of Greyson and I and our AMAZING VBS set, thanks super Dave!
On another note I should mention that we are planning on taking Greyson in for surgery on Monday to do the resection they were going to do last month (but ended up doing something different). We are not positive this is going to happen as we don’t meet with the surgeon until Saturday, but it is highly likely at this point. Stay tuned and we will keep you updated once we know on Saturday what is going to happen. Anyway enjoy the picture and have a great night!