Westfall Web

So last night before we left the hospital I noticed how funny Greyson looked with the socks on his hands.  They put them on him so he wouldn’t pull anything he isn’t supposed to pull.  Anyway he was holding them and opening and closing his hands a little bit which made it look like he was putting on a puppet show!  It was a crack up (at least to me, who went over and provided the voices for Mr. right and his pal lefty).

Today Stacy said Greyson was wide awake all morning and VERY playful.  It sounds like he was kicking his legs and moving his arms and head a lot as he played with her.  He was back up to 35 percent oxygen today, which is kind of a bummer but it was great to hear how active he was this morning.

They changed his feeding regime again today, which means Stacy will need to once again bring in a lot of milk.  This is bad because after the last change Greyson wasn’t needing much breast milk so Stacy quit working on making a lot, and now will have to crank up her efforts.  She can do it though, she’s quite amazing.  Today she did Greyson’s trach care all by herself, which is incredible.  I guess I’ll have to step up my game and try to do his care solo tomorrow so I can stay on the same level as her (OK lets be honest, she’ll always be more advanced, but I have to be capable before he can come home so I want to get to it).

Tomorrow they have scheduled Greyson for a swallow study so it will be interesting to see how that goes and what it means for trying to begin feeding him some by mouth.  We are praying we will be able to start on that soon.  They also put in for the pulmonary specialist to come check on Greyson.  This will be to develop the plan to bring him home as he will be the one to see Greyson once he is out of the hospital.  So things are picking up as we approach the day Greyson will come home. 

Today we got Greyson out of bed and Stacy held him for a couple hours.  For some reason today became one of those days where it really sinks in that life is going to be anything but normal.  It’s hard sometimes to listen to others stories of having kids (not that we don’t enjoy hearing them!), or even going to dinner and watching families, only to realize how different our experience has to be.  Please don’t take this as a downer post, cause it is not meant to be, but there are days and times where we just have to say, “this sucks”.  It seemed moving Greyson from the bed to a chair right next to the bed would be no big deal.  Well when your child is hooked up to a ventilator, what should be an extremly simple process can get quite complicated.  Again we are not trying to complain, we are extremely blessed, but there is some mourning involved in realizing some “normal” baby experiences will not be possible with the vent.

OK so now that I’ve bummed everyone out, let me tell you some fun stories.  First, from yesterday as I forgot to write about it, Greyson got in a bit of trouble yesterday.  The nurse came in and saw Greyson with his hands together in front of him (midline which is great developmentally).  She was about to really praise him when she realized that one of his hands was holding the end of his PICC line (like an IV but more permanent).  That’s when she realized he had been pulling on it.  After an X-ray it was confirmed that he had pulled part of it out.  So they can still use it to give meds, but it is no longer able to be used to draw blood from.  The good news is Greyson is off the IV pain meds, so he really doesn’t need the PICC line much longer.

Today we talked to the Dr. and he is starting to compress Greyson’s feeds, and work on getting his oxygen requirements down to room air, if possible.  So he is now on 30 percent oxygen (room air is 21 percent) and has been keeping his stats up really well.  He also has gone without food for 4 hours and will now be hooked up again receiving more food over a shorter period of time.  This is to help him get to a place where we can feed him by bolus, or putting all his food for three hours into a bag that gravity feeds into his belly.  This would take about as long to feed a normal baby, and then we can unhook him, close the button, and have one less thing to worry about till he gets hungry again.  We are also looking into getting him a swallow study next week to see if it might be possible to begin trying to feed him some by mouth.  This is something we are going to work very hard on, as the longer he is not eating from his mouth the harder it will be for him to learn.

OK so one final story for the day.  We went to outback for dinner tonight (we try to go out somewhere nicer at least once a weekend).  This satisfied my need for prime rib that has been brewing for about a month (one of the RT’s tells me almost everytime I see him that I need to go get prime rib).  Anyway while we were there we saw one of the RT’s from the NICU.  I waved and that was about it as far as communicating with her.  Anyway we got ready to leave and asked for a couple boxes (gonna be a good lunch tomorrow!) and the bill.  When the waitress came back with the boxes, she told us that the bill had been taken care of!   We were so humbled and overwhelmed by the incredible blessings people have showered on us.  Another example of this is that a couple days ago a nurse came in and said we had received something from the tube (they have a tube system like at the banks drive through that delivers stuff around the whole hospital).  It turned out to be two gift certificates for the expresso stand from “your sister in Christ”.  This one we have no idea who it was from, but it was such a source of encouragment to us.  So I guess if you are that person and are reading this, Thanks!  You made our day!  Wow this was a long post. 

OK so the passive agressive side of me said I should not post ANY picures today, after I specifically instructed everyone not to give me grief for not getting any new pictures (and I couldn’t post any old ones as the only pictures on my laptop are the ones already on the web), but I decided to be gracious and give you extra.

So I didn’t update the post last night, but we found out the reason Greyson was having such bad withdrawls (aside from the fact that he’s a bit hooked).  There was a slight mix up with the weening orders and while he got the two new drugs to help with the ween, they took him completely off the other drugs instead of just weening him down on the doseage like they intended to.  So he is doing much better today.

Stacy and I really enjoyed giving him a bath (in his own tub!) and he didn’t seem to mind too much either.  We then put him back in bed and did all his trach care, in about half the time it took us to do it yesterday.  This afternoon we met with the speach therapist and she gave us some good tips to get him going again on his oral development. 

We just got back from dinner and Greyson is snoozing so we will leave him alone for awhile.  Then later we will probably hold him, getting him out of bed ourselves!

Well in this case it might, but we are going to stick to methodon and adivan.  What in the world am I talking about?  Well today they took away Greyson’s feel good medications, otherwise known as narcotics.  He was on these narcotics so long that unfortunately he is going to go through some withdrawls.  We’ve already started to see this today and it is not fun at all.  He has been crying a lot and his heart rate has been quite high.  Moral of the story?  Don’t do drugs!

This has been a big day in a lot of ways.  Greyson was moved to a new room for a short time, then he was moved again to another room that was on the other end of the hall.  The good news is that this is all a part of the going home process.  The discharge nurse called this room the “launching pad to home”.  We are still a ways out but certainly getting closer all the time!

We knew it was coming today and they did switch Greyson over to the home style ventilator.  So far he seems to be doing OK.  The first blood gas they did came back fine.  They want to do another but are waiting until he wakes up as he finally fell asleep.

A person from physical therapy saw Greyson today and worked with him a little, she said he was doing very well.  Tomorrow the speach thearapist will meet with us again and we will work on oral skills.  The nice thing is it will be the same speach therapist as he saw in the NICU, so she will be able to judge how he is doing after his “sick” time in the PICU.  Today Greyson sucked on a pacifier which was encouraging to us as he really hasn’t taken one since he has been in the PICU.  I guess you remember things like how to suck when you are going through drug withdrawls, and nothing takes the edge off like sucking on a pacifier.  I may have to get one for Stacy.

So I know there is going to be a lot of people complaining that there is no picture today.  So instead of giving me grief I’m recomending you look at the picture from two days ago, he’s still that cute.  In reality we left in a bit of a hurry and didn’t realize we left the camera on the computer table.  So you’ll have to wait till tomrrow. 

Well today was the big day, Greyson’s first trach change.  It turned out to be a really big day as he also got a new monitoring setup in his room.  Of course the IT guys showed up to change the computer stuff, and right before they came in Dr. Holland showed up to do the trach change.  He asked the IT guys if they just wanted to do both, but thankfully they declined.  Then he asked me if I wanted to do it, but I quickly deferred back to him.  “Well OK” he said, “watch one, do one, teach one”.  The actual moment was a bit anti-climactic as he just did some preliminary things, then pulled it out and popped (well more like pushed) the new one in.  Greyson cried just a little (we could hear him cry a bit when the trach was out) but handled it very well.  They haven’t hooked him up to the other vent yet because the RT was busy helping with the change of all the monitors (every room got new ones).  His RT tonight said she might put him on the other vent if she got a chance, but we’ll see.  If not tonight they will try him on it tomorrow.

So Stacy and I cared for his g-tube and trach tonight, suctioned him and bagged him.  Through all of this I was absolutely amazed at how Greyson did.  It took Stacy and I a long time to do his trach care, but he was so patient with us and finally just went to sleep as if to say, “you guys go ahead, but I’m tired so I’m going to catch some sleep while you finish.”  Once we were done he woke back up and played with us again for awhile.

I am humbled by the trust that Greyson has with us.  Sure he is just a child and can’t fully grasp all that is going on, yet he patiently allows us to move him all around, pulling and pushing, till we get everything the way it is supposed to be.  It’s as if he knows that it is going to be OK in the end, so he will just wait and allow us to get the job done.  Even going to the point of falling asleep while we were still messing with him.  I wish I could say I responded the same way to God.  I want to trust him, really trust him, but when things aren’t going well I can’t seem to relax and allow him to take control.  It all made me think of this passage of scripture:  ^{Matthew 11:28?} “Come to me, all you who are weary and burdened, and I will give you rest. ^?29? Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. ^?30? For my yoke is easy and my burden is light.”  

 I certainly feel weary and burdened tonight, yet the truth is if I will relax enough to allow God to continue to work, He will take care of everything.  Somewhere in the distance I hear him calling me to calm down and trust him in the same way Greyson does with us.  The challenge is to get past the voices that surround us with the message that we need to do more, be more, push ourselves harder.  Jesus’ yoke is easy and his burden is light.  Tonight I think I’ll set my burdens down and allow my heavenly father a chance to do the things that need to be done, and I’ll get some rest.  Maybe when I wake up I can spend some time playing with Him before I head off to work. 

It’s almost ironic that we got this picture, and that Greyson was so happy tonight.  The reason for that is because he was incredibly sleepy when we got here tonight and wasn’t wanting to wake up.  Then the nurses came and gave him his immunization shots, which he did not like one bit!  He actually was crying so hard that he was able to push air past his trach (he has a little leak) and made a short squawking cry!  I would do that too if I had to have 7 shots all on one day! 

Once he calmed down, which didn’t take long, he was actually quite happy as you can see from the picture.  He was waving his arms around and smiling at us, it was great.  Stacy and I did his g-tube care, and suctioned him without any help and are starting to feel pretty comfortable with this part of his care.  Now we are waiting for the RT to come and give us some more training.

Tonight we also got our first ……I’m not going to say taste so maybe smell would be appropriate, of formula diapers.  He is now on 2/3 formula 1/3 breast milk.  This allows him to get all the calories he needs without increasing the volume too much for him.  All I can say is, IT STANK!!

Well that’s it for tonight unless something exciting happens with the training.  Otherwise we will wait for the big day tomorrow when he gets his trach change and we can pick him up again!

Oh and in case you missed it, Greyson is 6 months old today!!!  What a wild ride it’s been but we are praising God that we have made it this point.