Westfall Web

Tonight we had some friends over to play rook.  Greyson got bored and decided to help us play.  Then that got boring and he fell asleep!  OK maybe there was some staging involved, but we thought it was funny!  I know I haven’t posted in awhile, but there hasn’t been too much to say.  Greyson continues to delight us every day.  He is still not crawling (I told him he had till the end of the month, we’ll see how that goes).

Today they came and took the ventilators away (we had two, one for home and one for travel).  They also brought out a machine so we can provide warm humidified air for Greyson but the RT forgot all the connections we need to actually hook it up to Greyson’s trach so Greyson will have to go a couple more days with no humidification.  He has done well all week (he’s been off the ventilator for over a week already!!) but we think he will need some humidification time as he gets pretty dried out.  Hopefully we will get the parts soon and it will help keep him just right.  Not to dry, not to much as then we will have to suction him all the time.

Tuesday MARCH 3 (thanks everyone for helping me with my dates, I’m still learning the difference between May and March apparantly!) Greyson will have his Bronchoscopy.  We met with the Dr. last Friday and got more information about the sleep study.  Greyson did well enough to warrent the removal of the ventilator, but the Dr. felt he was not ready for decannulation yet (that is the fancy word for taking the trach out).  The bronchoscopy should give us information as to what the problems are and what steps we will have to take for the trach to come out.  This could be anything from he’s great it can come out whenever (the Dr. doesn’t expect this outcome, but God can still do miracles!), it could be there is some scar tissue that may have to be taken care of (this seems to be what the Dr. is expecting), it could be Greyson will need his tonsils and adnoids out, or Greyson may need reconstructive surgery to repair damage to his trachea.  So really it is wide open and we won’t know till Tuesday.  Don’t fret, I will post something as soon as we get back from the Dr’s on Tuesday so anyone who wants to know can check and find out the results.

Well I still have 3 hours on my watch so I better get settled in.

If you’re still reading this, thanks for keeping us in your thoughts and prayers, we appreciate you!!  My guess is we’ve lost some readers do to the decline in frequency with the posts.  So to those still checking in, Greyson says he loves you all!  (Well he said it earlier, he’s actually asleep now…………………)

Tonight Greyson told us to pack up his ventilator and get rid of it.  Funny request unless you are aware of the fact that although we didn’t know it, last night was Greyson’s last night on the ventilator!!  Yes that’s right, Greyson’s pulmonologist called and told us that he no longer had to be on the ventilator!  Praise the Lord!!!   We scheduled his bronchoscopy (where they will look down his throat and make sure the trach has not done any damage to his airway) for May 3 (two weeks from today!).  It is quite possible that on that day, in just two weeks, we will know when Greyson’s trach will be coming out!  Even if that takes a bit, this is a HUGE step forward and we are so excited to be done with the ventilator.  It served us well but we are not at all sad to see it go (well go into the family room, we will keep it around for a little while just to be sure there are no issues that come up). 

We also saw the cardiologist today and he said Greyson is doing great off the medicine we quit on Valentines day.   Anyway this is the last medicine that we had to get from Tacoma, so now we can get all his meds from our local pharmacy.  This is another HUGE step in our lives becoming more convenient.   We don’t have to see the cardiologist again for a whole year!

Now you can pray for us that we will be able to find child care for Greyson so he won’t have to go to day care.  This would not be good for him since he still has a weakened immune system.  We have a little bit of time, but once the trach comes out we will no longer get nursing (why would we?) and will need to find someone to watch him while we are at work.  We know that God will supply this need just as He has provided  for all of our needs throughout this whole experience. 

Last night while I was at my board meeting Stacy and Greyson were having a great time. Sorry the video is so bad, I’ll fix it tomorrow. He was still wound up when I got home and we all had a great time of playing around before finally going to bed (still WAY to late for such a little guy!). Greyson has been working hard on getting more teeth in his mouth, he is working on at least four new teeth at the moment. Two molars side by side are coming through which is making his mouth a bit sore. All in all we are getting off really easy with this whole teething thing as Greyson takes it pretty well.

If you didn’t check out the blog before this one please make sure you read it! We are thankful for the donation we have received so far!

So I’ve decided to volunteer with the March of Dimes and their March for Babies coming up in May. March of Dimes does a lot to fight prematurity and was an excellent resource for information when Greyson was in the hospital. If you have interest, click on this link and you can go to our fund raising sight. There you can get some great information and donate to help us reach our goal (if you want, no pressure! Although we will be arrested and put in jail if we don’t meet our goal…………just kidding). The fundraiser is a 6 mile walk that should be a lot of fun. Pray for me as I am taking on the role of “Family Team Chairman” for Kitsap County. This means I have to make a lot of phone calls. I really am not a fan of the phone, but hey it’s for a pretty good cause. As a reward for considering (even if you don’t want to donate!) I will post a fun video of Greyson tonight. So check back soon!

**here are the captions for the above pictures:  WHAT!??? mom gets to stay too!!???  Ummmm………..you’re taking these things right off again right?  I don’t like this anymore.

So obviously last night was the big sleep study.  Before going in for it we go to have a great dinner with Nurse Ashlie and Nurse Corrine (and her husband who we finally got to meet!).  It was great.  Stacy was planning on staying with Ashlie since they told us only one of us would be able to stay with Greyson.  Well when we got to the sleep center they said Stacy could stay too.  This put a worried mom’s heart somewhat at ease. 

The sleep study was to go from 7:30pm to 7:30am.  Well Greyson kept to his usualy bedtime and didn’t get sleepy till around 11pm.  So the first part of the study was just filing out paper work and talking to the tech (he had his own personal tech for the night).  Then at 11pm we fed him and wired him up.  He did really well with all the wires until they put the C02 monitor in his nose and we placed the cap on his trach.  This began a pretty rough night. 

Greyson has been doing pretty well with the trach cap, but the couple times he has fallen asleep while wearing it his sats immediately dropped and we had to take it off.  So we weren’t expecting to much at the sleep study.  Well they had to monitor him for at least 6 hours and the good news is he had the cap on for close to 6 hours.  The bad news is he was working so hard to breath that it was awful to watch.  He would fall asleep for about 10-20 minutes before his c02 level would rise and his oxygen saturation would drop.  Then he would wake himself up crying.  This could increase his oxygen saturation and drop his c02 level.  This went on basically from 11:40pm-5:30am with one exception.  Around 3:30am he woke up (completely  not just waking a little and crying).  He actually looked almost happy and began breathing easier and had good numbers again.  This lasted about 20 minutes while we chatted with the sleep study tech.  Then he fell back asleep and the horrible process started over.  At 5:30am they let us take the cap off and put his Passy Muir valve (the one way valve that allows him to breathe in through his trach but out through his nose and mouth.  Immediately he fell deep asleep and didn’t move again till we woke him up a little after 8am.  His breathing was no longer labored, his numbers were good, and he was sleeping peacefully.  Now you may have noticed the sleep study was supposed to end at 7:30am, but we didn’t wake Greyson up till after 8am.  See after he fell soundly asleep Stacy and I fell alseep as well.  They let us sleep till 8 before waking us up since they knew we had a rough night.

So what does all this mean?  Well we won’t really know for a couple weeks till we meet with the Dr. again.  It does let us know that he is not ready to have the cap full time yet.  The really possitive thing though is that it shows us that he can bring himself back up when his sats drop and his c02 rises.  Granted it doesn’t do much for the sleeping, but he did not require intervention (aside from some parental comfort, singing, and such).  This is a very positve thing.  Now we will have to wait some more to see what his Dr. has to say about how things went. 

OK just wanted to get this out there for those who are curious, now we are all going to bed for a nap.  We are excited that we have a night nurse tonight so Stacy and I can try to get caught up after a VERY long night.

So last week when we went to the Dr’s Greyson had to have some blood drawn.  He cried and the lab lady felt bad so she gave him a sticker.  When he was still crying she went and got this bear and gave it to Greyson to make nice with him.  I think he made out like a bandit!

The second picture is of the cardboard car (well truck) Mater.  Stacy and I made this ( and Greyson “helped” too!) as an example to show at church because at the end of the month we are having a “Drive in” movie night at church where families will make a car and bring it to the church gym to line up and watch the movie in (well probably near their cars).  It should be a lot of fun!

We are anxiously awaiting Thursday for the sleep study.  Greyson seems to be doing a lot better with the trach cap on.  We were concerned he was working to hard to have a successful sleep study but he might make it OK, it will be interesting to see.  Today he has had the cap on for 6 hours and seems to be doing pretty good so that is encouraging.  He is also down to 5 & 1/2 hours on the vent at night.  *We have been weaning him down a half hour every four days to get him ready for the sleep study, where he will go all night without the vent.  He won’t be off it before the study, but hopefully the reduced time will be getting him better prepared.  So pray for us that whatever happens God will make it clear what the next best step will be for Greyson.

So today was a pretty long day.  It was off to Tacoma to see three of Greyson’s Dr’s.  Today we saw the Nephrologist, cardiologist, and optomologist.  In that order!  The nephrologist is the one who works to keep Greyson’s body chemistry on track.  He still struggles a bit with keeping his potassium where it needs to be as well as his calcium levels.  I never took chemistry so meeting with her is always a lot to take in.  Basically she took some urine and blood samples and we will hear back later if we need to tweak anything we are currently doing.

The cardiologist said Greyson’s heart looked basically the same as it did 6 months ago, which is good.  He still has a little thickening of the heart wall, but it is not getting worse and the Dr. felt it would get better as Greyson continues to grow and improve.  The good news is we are decreasing one of his meds starting today and he will be off it on Valentines day.  This is good as it is the most difficult drug to get for us (we have to go to Tacoma to get it). 

The optomologist said Greyson’s eyes are developing well.  He does have a little astigmatism but it is mild and not something we have to worry about right now.  It could mean that Greyson will have to wear glasses but is not necessarily related to his prematurity. 

So that’s about it for today.  It must have worn Greyson out as he took a good nap when we got home (he tried at the Dr’s but we kept waking him up) and has been on the vent asleep since 10 or a little earlier.  Hopefully he will be well rested so he can play hard tomorrow!

**update–spoke to soon as when I just went back to the bedroom to get the picture for today I realized Greyson is now awake.  Doesn’t he realize how wonderful sleep is!!!

Greyson had fun (well maybe not as much as his parents, but he went with the flow as usual) as we tried out his big boy coat (thanks KJ and family!!!).  It was so fun but made him look all grown up!

While this other picture looks basically like any other picture of Greyson, if you look at his trach you will notice (at least now that I’ve pointed it out to you) that Greyson has his cap on.  Today Greyson went 3 1/2 hours with the cap on.  Impressive!  This helps give me the assurance that he will be ready for the sleep study in two weeks. 

After feeding him tonight he was still playing in his pack and play.  I went in to take a shower and Stacy was folding laundry.  All of a sudden Greyson started belly laughing so Stacy went over to see what could be so funny.  Greyson was just looking up at the ceiling laughing so hard he shook the pack and play.  I don’t know if there was an angel making funny faces or what, but he sure was getting a kick out of it!

Thanks for all your prayers as we continue to draw ever closer to decannulation (getting the trach out) and what should be a much more “normal” life.

Well yesterday we got the trach caps and today Greyson had his trach capped for 2 half hour sessions (so a total of one hour with his trach capped today).  We are taking it slow and easing him into wearing the cap as he seems to breath a little faster and maybe harder while he has it capped.  Oh in case you didn’t get what that is, this means we put a plastic cap over the trach so all of his breathing is done through his mouth and nose, basically it makes it like there is no trach (although it is taking up space in his neck, so there is an effect still having it). 

We are praying he adjusts well to having it capped, and does so quickly as we got word this week that his sleep study will be on Feb. 5.  That’s just two weeks from tomorrow!  For the sleep study Greyson will have his trach capped all night (provided he does OK) and will go without the ventilator or oxygen (at least that is the goal).  If this goes well the next step is a bronchoscopy and as long as there is no damage (which we don’t have any reason to believe there is) we look at scheduling a time to spend the night in the hospital so they can take the trach out and put a bandaid on it.  (They don’t sew the stoma closed unless something has gone “wrong” and they have to sew it closed)

So pray he stays healthy and adjusts to the cap so the sleep study goes well.  I believe if the sleep study goes well that will be the end of the vent so that will be a huge blessing even if it takes a bit longer to get the trach out. 

Last night Greyson was so fun.  He was laughing at Stacy and I (well hopefully WITH Stacy and I although it was hard to tell!) as we did all kinds of things with him.  He gets really wound up at night now and is just a blast to play with.  We’ll try to get some more video or at least some new good pictures soon.  These are GOOD days and we thank God for every one of them!!!

Well this was a fun video so we thought we would include it on such a good day.  This has been a great week for Greyson!  Today is his would’ve could’ve should’ve been born day!  Yep today is one year from his original due date.  So this week we saw the Neurologist who said he was showing good progress in his development (we knew this!).  We also saw the Urologist who had an ultrasound done to look at his kidney stone.  Well his 6mm stone is now 3-4mm.  Yep it is about half the size it was!  The Urologist was shocked and said there are only  a few types of stones that can dissolve and even if you have the right kind they rarely do.  So we will keep praying that it will continue this great trend and dissolve all the way! Then today he got his second Synagis shot (Ouch!!!)  and saw the Pulmonologist.  He said Greyson was doing great and ordered a trach cap (this blocks the trach so Greyson has to breathe completely out of his nose and mouth) and a sleep study to see how he does with his trach cap and no ventilator.  While in the office the Dr. blocked Greyson’s trach with his finger for a couple minutes and Greyson did so well you wouldn’t have even known it was blocked!  In fact Stacy didn’t until it was over.   If the sleep study goes well they will schedule a bronchoscopy to see how his trachea is doing and if there has been any damage from the trach.  If that all goes well we will progress on to taking the trach out.  This could take some time and will depend on all of these studies going well but we are progressing again even though it is winter because Greyson is doing so well!  Praise God for all He has done for our little guy!