Westfall Web

No it’s not just a fancy title for final movie in the Lord of the Rings trilogy, it’s also the update on what is happening at the Westfall’s.  Greyson is home and we are working at getting settled back into home life.  It will take a little bit to get him back into his routine (which he only really got used to for a couple days as it took us a couple weeks to figure out what his routine should be!).  He did pretty well today and only cried a little when he got his shots (yep it was immunization time again) thankfully he only had to have two shots to get him all caught up.  We were able to get home around 1:30 this afternoon and spent the afternoon getting everything situated and put away from all that has been going on. 

Last night in the hospital Greyson was working at “swatting” one of the toys that was hanging over him.  He was getting pretty good at taking his left hand across his body (missing the toy completely) and then smacking the toy as he flung his arm back out to his side.  At first this seemed like coincidence that he was hitting it, but after watching him for awhile he was definately doing it on purpose.  The entire time he kept his eyes fixed on the toy and while his movements were a bit jerky, they were definately showing some signs of control (granted it was like controlled chaos which I think is why he did it the way he did).  If he’d try to touch it on the way up he didn’t have the strength to control his arms and ensure contact, on the way down though he had more control to make sure he made contact every time.  He’s starting to learn!  Now if he could just figure out how to get paid for that he could start supporting his parents retirement.

Greyson had a decent night last night.  They did have to give him another dose of lasix as he hadn’t peed in a really long time.  It worked and he has been doing better since.  They are thinking he may have to have it once in awhile but are still hoping he can back off of it.  His afternoon labs were a little off, but not real bad.  As it stands we are looking at getting discharged sometime tomorrow. 

Well it’s Saturday night and once again I am home alone while the rest of the family hangs out in the hospital.  Kind of a bummer.  The good news is that Greyson had labs done this morning and at 2pm and his afternoon labs were really good.  His sodium and potasium were both back in the normal range.  Stacy tells me that tonight he is also looking a little less puffy and is not working hard to breath.  They  will do labs again tomorrow and hopefully he will continue to stay where he should be.  It is highly unlikely we will get to come home tomorrow as they really want to make sure his electrolytes stay where they need to be and that will probably take at least another day, but we’ll see.

He was pretty happy today and we got him some toys from the hospital to play with.  He is starting to reach out to touch his toys and it is fun to watch him begin to interact with them a little more.  Stacy has been such a trooper getting up every 3 hours to pump his meals for him.  Everyone is so impressed with how she has kept that up even with all the stress and lack of sleep that she has experienced.  For mothers day I would love to give her the day off from that as a vacation, but I’m not sure how I could fill in.  I’m told there is medicine that might get me some but I think I would have needed to start earlier and even then it wouldn’t be enough for one meal, let alone a days worth. 

So you may be wondering what is happening with the stones.  Well apparently nothing is going to be done and we are going to pray he passes it (the big one as well as all the little ones) without complications.  Stacy found an article online that seemed to say that kids can often pass larger stones than adults, but his is quite large.  It’s 6 milimeters (or whatever the correct measuring system is).  To put that in perspective a few years back Stacy had a stone that was deemed to large to pass and she had to have it blasted to bits in order to get it out of her kidney, hers was 5 milimeters.  Either way the poor guy is going to be experiencing considerable discomfort until it passes.  So pray for it to break apart (it has been known to happen) and for him to pass it out without problems so he can be done with it!

Well today has been another long day in the hospital.  Basically it has been one of those days where not a lot is happening but you have to be there so you can talk to the different Dr’s as they come through.  They have taken Greyson off his lasix as it is the drug that is almost certainly responsible for both the metabolic issues and kidney stones.  The potential problem of taking him off of this is that he retains fluid and it negatively impacts his respiratory ability.  Well so far he seems to be holding his own well off of it and they have also reduced the amount of IV fluid he is receiving.  The plan now (if I understand it properly) is to get his metabolism normalized and send us home, potentially sometime this weekend. 

So what about the kidney stones?  Well it looks like they are not wanting to do anything about them right now other than waiting to see if he can pass them on his own.  Since this basically means just watching him carefully they appear to be willing to let us do that at home with a follow up ultrasound in a month.  So it could be a long month if he doesn’t pass the large stone, but sems better than just sitting in the hospital waiting to see what happens. 

We are unsure why his respitory status hasn’t gotten worse but do know that people are praying and believe God must be touching his body during this time.  I say this simply because we expected with the removal of the lasix and the extra fluid he has been receiving that his respiratory status would take a bit of a downturn, we are very happy that this doesn’t seem to be happening.  So basically after talking to all the different people today we are just hanging out tonight and we will see where his labs are in the morning.  Of course we are keeping an extra close eye on him in the meantime to ensure nothing gets overlooked.  So hopefully we will be packing him up and taking him home by Sunday.  We’ll have to wait and see what the Lord has in store for us.

OK we now have a definative answer.  Greyson has a kidney stone.  A rather large one that more than likely will not pass on its own.  He may also have some smaller ones but they are not the issue.  This is a HUGE relief to know why he has been so aggitated when we feed him and at various times.  Also the reports are back from everything else and it appears that the he is FINE!  No infections or other issues other than having some electrolytes be out of whack.  This (EVERYTHING) is related to one of the diruretics he was on so hopefully once we get the kidney stone taken care of we will be back to smooth sailing.  Since the diruretic is basically a given cause for the kidney stone, once he is off it he shouldn’t be at any greater risk for stones later in life than anyone else.  So this is good news!! 

So here we are at the end of the day writing from Children’s hospital in Seattle.  Even with the change of scenery the needles are still unpleasant.  Unfortunately we still don’t have a lot of definitive answers to all that is going on with Greyson, but a couple of the early signs are not so pleasant.  Not life threatening, just extremely painful.  I’m talking about the fact that it looks like Greyson has developed kidney stones.  Having lived through kidney stones with his mom a few times (like on our wedding day!) I can assure you they are not a pleasant thing at all.  We haven’t talked to the Dr.’s yet about this, but we were both here when they did the ultrasound of his kidneys and the tech was definately measuring a few objects that were inside his kidney.  This coupled with the information that he was dehydrated and had excess calcium seems to lend support to kidney stones as the diagnosis for the bloody urine.  If that is the case it is good that we have a diagnosis, but bad that it is something that can be so painful.

As for the other issues they seem to be better.  His trach aspirate came back with some stuff in it, but no infection and basically I am told the stuff that was in it is pretty much what you would expect to be hanging out in a trach (Gross!).  The initial results from the lumbar puncture do not show infection, but they have to wait to see if anything grows out. 

His metabolizism was out of whack but that seems to be coming into line slowly.  So we are hanging out right now hoping everything stablizes and we can go home.  As I type this knowing about calcium buildups in his kidneys it certainly seems like he is experiencing the pain of stones. 

On a positive note one of the Dr’s that Stacy talked to today was going to call one of Greyson’s Dr’s and see if we can get him off one of his diretics.  One of his diretics is very potent and can wreck havoc on his metabolism if we are not careful.  This could also lead to becoming dehydrated which can impact the production of stones.  He also talked to her about Greyson’s lungs and was very encouraged by what he was seeing.  His X-rays looked good and he was going to talk to Greyson’s Dr (yes again) about trying him for some short periods (probably minutes, but anything is good!) off the vent to see how he would do.  We will see what becomes of this.  The important thing is that several people have said that his lungs did not look like what they would expect a preemies lungs with chronic lung to look like (not perfect, but not what they would expect) and they didn’t sound like they would expect a baby with chronic lung to sound like.  All this means that he is doing pretty well on the vent and his lungs seem to be healing and growing now that he is on it. 

So we press on asking God to touch Greyson and free him from the pain he is experiencing.  Having just weened him off of the narcotics a week ago we are not anxious to see him started on anything powerful again, yet are not enjoying watching our little guy suffer either.