Westfall Web

A while back Greyson was skyping with his Grandma Terry and his Aunt Debbie when he really got into the singing. We were able to get this great video from it. Enjoy! Greyson continues to learn new words, and do new things all the time. The bad news is, for my nose, his favorite thing to do right now is honk noses. He is not very gentle and he can really get your nose if you are not careful! Anyway turn up your speakers and feel free to sing along too!

OK so I know a blog entry is WAY over due, so here is a video to keep you interested till we do another full update. This was Greyson after we had been working at the church for a few hours cleaning out the resource room. All of a sudden he headed for the open door and…..well watch and see how he felt.

Well as promised here are some videos of Greyson. The first is from our trip to watch the Mariners play. You can see on Greyson’s face that he had a great time, but was dissappointed in their performance at times. Then there is a video from today showing Greyson……”picking” rasberries. As you can see he was not entirely helpful. Although he had a blast….with the exception of the two times he crashed with his walker. It was very rough terrain but he did very well….until he tried to pick up one side of his walker too high and toppled completely over. While there were some tears I showed him a cow that was across the fence and soon everything was OK.
Finally we have a video from last Saturday. It had really been hot so we thought we’d give Greyson a chance to cool down. We were shocked by the result! Anyway enjoy!

Well it’s been awhile I know, but summer has finally arrived in Bremerton! We have been enjoying sunny days and warmer weather. We have also been keeping very busy! After coming home from the hospital Greyson has visited with Barbara Kollars to celebrate her birthday

visited with an old friend and her new daughter,

and gone to his first ever Mariners Game!

Then last night he went to the drive in

as you can see Greyson got a lot out of the movie! Anyway it has been a lot of fun the last couple of weeks. I’ll try to put some videos of all the fun up soon.

Well we made it home from the hospital Saturday night. Greyson was pretty happy to be home and definately feeling much better than he had been. Life was pretty uneventful and then today we tried Greyson’s Passy Muir valve and he has been tolerating it very well. This is great because as you can see from the video, it means we get to hear him again! His voice is a little hoarse still but really not too bad. We are so thankful that we are basically back to normal again. God is good and has been watching over all of us without a doubt!
Now we will wait and see how things go over the next month. If he is doing really well we will try to cap his trach from time to time (this means we put a cap on that doesn’t allow him to breath through the trach at all, letting us know if his airway is open enough for him to breath). This would be ideal, if he can’t breath with the trach capped then we will probably be looking at having the resection surgery done sometime in the future. So we are back to normal and back to the wait and see game that we just love so much. (in case you didn’t know, patience is not my gift!).

As you can see we worked at making the hospital as fun as we could. Greyson really wasn’t feeling very well but did enjoy getting out of his room for a quick spin. It was really funny because they put this “no-nos” on his left arm to keep his IV safe. Well for quite a while Greyson would only hold his arm straight out to the side. We kept telling him he could lower it, but he said “no way!” and kept it out like it was locked.
So this morning Greyson’s Dr. came in and took him to the operating room to see what was going on. We were shocked at how fast it was before they were bringing him back to his room. Unfortunately things did not look good in his airway AT ALL. His vocal cords were so swollen you almost couldn’t tell what they were and once past them Greyson’s airway was completely blocked with fibrinous tissue . This is tissue that can form as a result of irritation that is the first step in the development of scar tissue. This was either because the stent was moving which was irritating his airway, or simply Greyson’s body rejecting the stent. So basically Greyson’s airway was on the way to completely scaring over, scary! So the Dr. took out the stent, cleaned out all the fibrinous tissue, and brought him back to his PICU room. We then waited for him to wake up (Greyson, not the Dr.) fed him some food, made sure he was doing OK and even allowed Greyson to stand in his walker.

As soon as we put him in his walker Greyson headed for the door! We stopped him and got him all unhooked and then loaded up and came home. Greyson is feeling much better this afternoon and aside from having no voice (he can’t yet wear his Passy Muir valve which means all his air goes in and out the trach…..so no air past the vocal cords means no voice!) you almost wouldn’t know he had such a wild week.
So what will happen now you ask? Well that is a good quesiton. As I think I said in post earlier when they went in to do the surgery wednesday Greyson’s airway actually looked better than it had the last time they looked. Then as a part of placing the stent they dilated his airway before putting the stent in. Well when they took the stent out his airway didn’t look that bad (all this is relative of course, it was highly inflamed and swollen) now it didn’t look great, but not bad. So the plan right now is to wait and see (haven’t we been here before ha!) what happens over the next month or so. There is a chance Greyson’s airway will stay how it is even without the stent holding it open. If that is the case and he can breath good enough we will try capping the trach. If he can still breath good eventually we will just take the trach out. As has been the case before those are some pretty iffy ifs. If it doesn’t stay as it is and he can’t breath well enough with it we will reschedule the trachea resection surgery and go through everything we were prepared to go through this time.
So while it is a bit dissapointing it still may work out in the end. If it doesn’t and we still have to have the resection at least we will know we did everything we could to avoid that serious of a surgery before going ahead with it. In the meantime we will be working on getting back to our “normal” life. We are praying Greyson will be able to tolerate his Passy Muir valve again soon as it means MUCH less suctioning for us and we get to hear his cute voice. Which reminds me of one last great story!
So we knew we were going to be able to go home and were feeding Greyson and doing all the things we needed to get done in order to be discharged and Greyson started waving and saying “buh bye!” Well he wasn’t actually saying it since as I’ve mentioned he can’t talk, but you could see him mouthing the words as he waved. It was SO stinkin cute!

Well Greyson made it out of the Pediatric Intensive Care unit yesterday morning. On our way home we stopped for lunch and took this picture of Greyson. Not to bad going from intensive care to looking like that all in a day!
We had a laid back afternoon, all of us came home and took naps. We were exhausted after the 20 hour day Wednesday. Then we got up and went to the park for some swinging, slides, and grocery shopping. Well OK we didn’t actually shop for groceries at the park, but we did go to the store after.
While Greyson is doing OK it wasn’t the best night for us and we are waiting to see how today will go and if we might need to take him in to be checked up on. **He is doing fine but there are couple things happening we are unsure about and are waiting to hear if it is a normal part of healing from surgery or if they need to look and see if it is something to do with the stent they put in his airway. One thing about it, life is always interesting!!

Well as it turns out our quick stay in the Picu was followed by a quick stay at home. Tonight we find ourselves back in the Pediatric Intensive Care unit for another night (hopefully just one!). Basically Greyson made it home yesterday and all was fine but over the course of the day his voice got weaker and weaker until it was basically just completely gone. Then last night he had A LOT of thick secretions all night and over the course of the night became unable to wear his one way valve (Passy muir). Since he still has the trach he was still able to breath through it and was doing fine but this morning was still unable to wear his Passy and when we plugged his trach hole he couldn’t move any air in or out.
So we called our Dr. and he said we needed to come back to the PICU where he could take a look and see what was going on. He did this (just prior to this video) and found Greyson’s vocal cords are very swollen, so much he couldn’t get a very good look inside. So the plan is to keep him overnight and tomorrow go back to the operating room where they can put him into a much deeper sleep allowing them to get a better look to see if the stent has moved around. If it looks like the stent has moved they will take it out and we will have to develop a new plan. If it still looks good and like it hasn’t moved we will probably go home and see if the swelling goes down on its own.
In case I haven’t mentioned Greyson is in God’s hands and He is the ONLY one who knows what is going to happen with all of this. The rest of us get to sit back and enjoy the ride with all its ups, downs, and unforseen turns! Anyway thanks for checking in on us, as you can see Greyson is doing just fine, even though he was much happier at home with his toys!

Well the day has arrived and we are in the Picu waiting for Greysons surgery. We will post something as soon as we can when it is over. Surgery starts at 8 and should last around 4 hours so it will be early afternoon before we know anything.

So we came to the hospital today fully expecting to have the above named procedure. For this procedure they cut out a section of his trachea and sew the two ends back together. This would have necessitated a two week hospital stay and would have been a difficult recovery.
So we got to the hospital and the Dr. (well Dr’s as we had two top notch surgeons working on Greyson this time) talked about trying to place a stent in his airway instead of cutting out the bad section. The feeling was if this worked it would be much less invasive (with MUCH lower risks of complications) and if it didn’t they could go ahead with the resection.
Well it took A LONG time (just as long as it would have taken to do the resection) to get the stent in, but they did and feel there is very positive about the way things look. So what will happen now is we will continue on with life (leaving the hospital probably tomorrow!) with the trach tube still in place. Meanwhile the hope is that his trachea wall will get stronger. In a couple months (2-3) we will go in and take out the stent. Then we will wait and see how things look. If a couple months go by and he it remains looking good, we will then pull the trach out and move on with life. If it doesn’t stay looking good we will then schedule another surgery where they will do the resection we thought we were having done today.
So basically this became another option to try before going to the drastic step of a resection. While there is slight sadness that the trach is still with us, it is more than made up for by 1)the fact that we get to go home soon (probably tomorrow!) and 2) the fact that they did not have to cut on his airway. So this is a positive outcome and we are thanking God for the way he has been at work.