Westfall Web

Oops.  Looks like I forgot to do an update for yesterday and if my computer doesn’t stop making this bad clicking noise I may not be able to do an update tomorrow.  It sounds like it is dying but I can’t track down the problem yet.  Hopefully I’m geeky enough to fix it soon.

Man how time flies.  I can’t believe we are almost at the end of May already.  I feel like I’ve lost a year (but I gained Greyson which was MORE than worth it!).  Well yesterday we took Greyson for his weekly outing to a Dr’s appointment (he basically has at least one Dr’s appointment every monday).  This was for the GI.  They said he looked good, made some changes to his feeding recipe, and told us to schedule another visit in 4 months.  We are hoping we can schedule that appointment for silverdale as the Dr comes over once a month.  We’ll see how it works out.  The nefrologist was able to squeeze us in on Friday so we will be running back over to Tacoma then.  They will run a bunch of tests and hopefully be able to provide better input into how to work with his kidneys to keep the fluid off, lower his calcium levels (they are too high again), and help him with the kidney stones all without compromising his respiratory status.  It’s a lot for them to do but that’s why you call them a specialist.

Tonight we have a new nurse here with us for a few hours who is orienting.  She is going to work for us on Saturday nights.  This will be a huge help as that is a night I can’t stay up past 1am or I would be unable to function at church on Sunday.  That leaves Stacy to do most of the night and most of the day Sunday.  So this new nurse will be a huge blessing.  We still have a long way to go to get the nursing hours we need in order for Stacy to go back to work.  So please continue to keep that in your prayers.  We seem to get nursing for days, or nights, but not both, which we will need at the end of summer for the hours Stacy is working.  It’s going to be very interesting to see how God works this all out.  We are still just blown away by the people Stacy works with.  Her leave has run out again but they have sent out another request for others to donate more leave to her and it sounds like some will.   I honestly don’t know how we would have made it through this year if the teachers at her school had not been so generous.  God really does provide and we have to remind ourselves that He knew what He was doing when He blessed us with this incredible child. 

Well it’s Sunday night (or monday morning depending on how you view things) and it is about time to go wake Stacy up.  1am is feeding time and she provides the meal.  I think she is going to take over for me now as well, since she got a little more napping time than I did today. 

Today was one of those days where you wish you could do more, be more, or something like that.  Guess I’ll have to trust that in my weakness God’s strength really is evident.  I encountered a couple situations at church today that just left me feeling so helpless.  I so want to be used by God yet these situations are WAY beyond anything I could ever begin to help with.  Henry Nouwen a famous christian author has a quote that I have above my desk that reminds me that sometimes it is not in having the answers or being able to change a situation, but simply being willing to stand beside others that is most important.  I’m praying that is true tonight and that I will be able to stand beside these people in a meaningful way this next week. 

Well just thought I’d throw that out there, I know I’m supposed to update on the boy but there is more to life than c02 numbers and kidney stones!  Greyson has slept a lot today which could be due to an “episode” he had last night.  Around 10:15pm last night (saturday night) as I finished feeding him he started really acting like he was in pain.  Basically for the next hour and 15 minutes there was nothing I could to to make him feel better.  I think it was stone related.  So today he rested (and played with the nurse I’m told, I just missed it).  Right now he is laying very peacefully in his crib.  So with that I go to wake up Stacy (who is feeling better, thanks for the prayers!) and see about getting some sleep!

Last night somewhere between 11pm and 2am I was watching TV with headphones on and suddenly I heard a strange noise from Greyson’s crib.  I ripped the headphones off my head and jumped up to his crib to see what was the matter.  He was laying there sleeping soundly.  Non of his equipment was indicating an issue and he looked fine so I sat back in the chair.  A few minutes later, same noise.  This time I had an ear free and heard it a little better.  Could Greyson be gagging on his spit?  I went over and placed him on his side so his drool would be able to flow out of the side of his mouth.  About 5 minutes later I heard it again.  This time I decided to suction Greyson to make sure nothing was getting down his airway.  That was kind of funny because he was sleeping so soundly that he was letting the vent breath for him.  When I unhooked him from the vent suddenly he woke up and looked like, “Hey what’s the big idea?!!”Anyway I suctioned him but got nothing so I got him settled and sat back down.  After about an hour of all of this I heard the noise again.  Suddenly it hit me, the window was open and there was a frog croaking right outside the window.  Ah, good times!

Well it’s 10:23 and the kid is FINALLY drifted (not sure drifted is the right word here, but oh well) off to sleep.  He almost went to sleep a couple times earlier, but something woke him up again and made him unhappy.  Anyway he’s just been fed, medicated, and now is asleep so maybe he will have a solid nights sleep since he didn’t sleep much today.

We got his lab results back and everything looked OK.  He did have a couple areas that were low, but from what I researched on the internet it is not a problem if these areas are low, only if they are high so we are moving forward. 

As you can see from the picture we had some fun playing today.  Greyson continues to be a lot of fun.  It was warm here today so right now Greyson and I are listening to the sounds of outside as the window is open.  As the room cools down we’ll close it, but it’s nice to hear something besides the machines, not the mention the fact that it is ….ok sorry for the interuption but I had to go burp (well actually it’s vent) Greyson.  I’m probably a wacko (easy with the comments on that statement!) but I really enjoy venting him.  You take a tube that is very similar to his feeding tube, but with a longer tip and shove it into his g-tube.  If he has gas, it makes this great sound as the air comes rushing out.  Probably sophmore humor because I also like it when you hear him “self vent” ha!  Still impresses me that he can be so loud when he is such a little guy, I love it!

Well this is an older picture but since we didn’t take pictures of him today I’m going with this one.  I’m to tired to put up a fight against all those who insist on having a picture, and aside from being blurry this is a great one.  So we went to the Dr’s this morning and got labs drawn.  It took much longer than I anticipated.  I didn’t get into the office till a little after 10!  Crazy since our appointment was for 8:50 and all we were doing was having blood drawn and touching base with our pediatrician.  So right now the plan is to have labs done twice a week.  Greyson was puffy last night and hadn’t peed in about 6 hours so we had to give him a dose of lasix.  That seemed to help and he has been peeing OK today.

He had a rough night and didn’t sleep well at all, probably due to discomfort from the kidney stone.  He now has to see a urologist (no suprise) and a  nefrologist to have his kidneys checked out.  I’m telling you this kid has seen more Dr’s in his short life than you could believe.  It would seem his kidneys are not performing optimally which is a common problem with preemies.  Yes it just never ends.  The good news and hope is that they will “smarten up” as he gets older and perform better than they seem to be doing right now.  I’m sure all the meds he is on doesn’t help any, but that is what the nefrologist is for.

As for the lab results from today your guess is as good as ours.  They never called with the results so if we don’t hear anything in the morning we will call and try to get the results.  

Pray for Stacy as she is running a slight fever and overall just not feeling well.  She doesn’t get the rest she needs but since I can’t produce milk to help out we kind of have to keep waking her up to pump.   

Greyson was pretty sleepy today.  He did play some with Stacy, some with me, and some with his nurse.  Once while the nurse left him alone in the living room to get something out of his room he swatted his ball that was hanging over his crib so hard he made it come loose.  I was in the other room and when the nurse and I went in to watch him do it again he just kept looking like “what?  Nothing to see here” and didn’t do anything but suck on the back of his hands. 

Well it’s off to bed as we have to get up early enough to get Greyson ready and to the Dr’s first thing in the morning.  The good news (for Stacy) is we have a nurse coming from 9-1 tomorrow so she will not have to go it alone all day.

The big announcement for tonight is that I finally got Stacy out of the house!!  She went with our friend michelle to the movies.  It sounds like they enjoyed the movie and had a good time getting out.  Stacy really needed to get out and visit with someone so it was good that she could do it.  This left just the boys at home alone for about a half an hour before the nurse got here.  It was kind of nice having a little guy time.

So I just didn’t get around to doing an update last night, other than to say I wasn’t going to do an update.  Everything is rolling along fine at the Westfall’s, Greyson is settling back into home life and we are frantically trying to get caught up on the mundane things like doing laundry and mowing the lawn.  Today Greyson was looking a little puffy and was not acting like he felt his usual early morning self so we will keep an eye on him to make sure nothing is up.  We go to the Dr’s tomorrow to have labs done, so we will be able to see if he is keeping things in balance then.  We haven’t given him any lasix since last Saturday night so even if we had to give him a dose it would seem he is needing it less and less.  It’s kind of funny now that he is home and we are doing A LOT more with him it seems harder to think of things to comment on when I sit down to do an update.  I guess now if you want to know what’s going on you should schedule a time for a visit!  *read the following with the speedy, small print announcers voice that comes at the end of a lot of commercials–(all visitors must be in good health and prior arrangements should be made.  Greyson’s parents make no promise either explicit or implied that Greyson will be in a chipper mood or even awake for your visit.  While a visit to see Greyson does not require gifts, he is still working on attaining a wii.  All wii’s donated to Greyson will in all likely hood become the sole posession of his parents and will be utilized by them until which time Greyson can beat his father at one of the wii games.  At such time the wii will have to go away.  Some restrictions may apply see store for details.)