Westfall Web

Well Sunday is over and we are turning in for the night. I forgot the laptop which means no pictures for today, sorry but these things happen. Today Stacy said Greyson was awake for a long time and was in a very good and playful mood. They upped his wean meds and slowed down the wean which he seems to be doing better with. He is much less cranky and much less gittery as well. Other than that I don’t know what to say, sorry today update isn’t exciting, but I promise to make It up to you all tomorrow. Night all.

Tonight when we came in Greyson was all propped up between two large pillows.  Why?  Just because he is getting spoiled.  I told him not to get to attached to this kind of treatment, because it will be different when he’s home.  Today we didn’t spend much time at the hospital (well Stacy is still there but I had to come home for church tomorrow).  Instead we continued to put Greyson’s room in order (we had to think a few things through due to all the medical equipment).  Then we waited for the home equipment guy to come by.  We now have Greyson’s primary ventilator in his room (this will be his primary vent, the one he has in the hospital will be his his “mobile” vent as well as serving as a backup).  We also got his pulse oximiter, his oxygen concentrater (makes pure oxygen out of room air), a tank of oxygen (for a backup in case the concentrator fails), and a few other things.  Now we have everything we need to bring him home.

It is a weird feeling to finally be so close to bringing him home.  I was reflecting tonight on how it felt on Sunday night about seven and a half months ago when I took Stacy to our local hospital to have her checked out.  I remember thinking how wierd it felt to be rushing off to the hospital late at night and  praying that everything was going to be fine and we would go back home for Stacy to finish the pregnancy on bedrest (which if you didn’t know she was on starting two days after finding out she was pregnant, at 19 weeks).  Little did I know that we would be staying in that hospital for almost two weeks, with Stacy upside down, before transferring to Tacoma.  Less than a week later Greyson was “born” 16 weeks early.  Now, just shy of seven months later, we are on the verge of Greyson’s homecoming.  I wonder what it will feel like to push him (and all his “extras”) through the door.  Do we load him all up in his stroller to get him from the car to the house?  Do we unhook him and carry him in and quickly hook him back up to everything?  That’s probably the best way, as it could be raining when we get here.  These are fun (and a bit scary!) things to be thinking about.  Lord willing next week is going to be a really fun, exciting, thrilling, freaky, exhausting, happy, confusing, stressful, interesting week. 

Well the big 48 hour live in is over, and I think we have survived.  Honestly I have to say that was not easy.  We decided that rather than trying to sleep in the room with Greyson, one of us would go to the parent apartment and sleep and then come and relieve the other one.  It was a perfect plan well executed.  The only glitch was that it required sleeping during periods of the day.  For instance Stacy was to relieve me at 4am and I was going to go to the apartment and sleep as late as I could.  Then I would relieve her and she would sleep as much as she could before spending the afternoon together.  The problem of course was construction at the hospital.  It was so loud it was like a jack hammer was going off right outside our window.  Oh wait, I mean it was loud because a jack hammer was going off right outside our window!

Then there was the fact that Greyson was not always in a super mood.  The hard thing with him is deciding if it was drug induced (he’s still on his ativan, methadone wean), if he is having a problem (something wrong with his trach, needs suctioning)  If he’s gagging or trying to throw up (which is made difficult by his fundoplication), if he pooped (easy one, you can smell it!) if he has a wet diaper (also easy, just check it!), if he’s hungry (hard to tell if he’s got hunger pain since he’s really never been hungry) or if we put the food in to fast causing problems (we are now gravity feeding him so the higher you hold the syringe the faster it goes in, which can be REALLY fast if you hold it straight up, but I’m not telling how I know that!) or if the kid is just being a baby (literally and figuratively, ha!).  All in all though we feel pretty good about the experience. 

Now we are home tweaking his room.  The nice thing about how this worked out is we get to sleep some before he comes home as well as set up all the home equipment before he arrives.  This will allow us to make tweaks to the plan before he is actually here with us. 

Stacy read Greyson a few stories, I think he wanted more but as new parents we definately don’t want to get caught in that trap.  So everything is pretty much ready and in place for him to come home.  Now it’s just hanging out till they say we can leave (early next week).

OK so Stacy thought she would see if Greyson would grab onto her straw (it’s just water, but soda makes a funnier caption).  Not only did he grab it, but when she went to pull it out of his hand he held on so tightly it bent the straw as seen in the second picture!  This is kind of funny because sometimes we wonder if he can hold on to stuff.  I guess he can, if he wants to!  Well it was a long night and a long day but we have enjoyed taking care of our son.  While the nurses and RT’s still come in once in awhile, basically we are doing everything for him.  It is nice to feel we are finally at a place where we can take care of him, even with all his “extras”. 

So today is bonus picture day because I got this great picture earlier when Greyson was attempting to write out a to do list for us so that we could take him home with us.  Thought I’d throw it in for your enjoyment.

Well today was a flurry of activity for the Westfall’s.  You would have thought we had a revolving door cause as soon as somoene would leave (or often before!) someone else was there to talk to us about something else.  Nurses talking about medications, RT’s talking about treatments, the home equipment guy showing us the home suction machine and oximiter, the infusion people (for feeding), representatives from the respitory clinic, physical therapy, neurology consultation.  I think that is about it.  The neurologist said he thought Greyson was doing well, a little behind but considering all he’s been through he thought he was doing good.  He did warn me that Greyson is showing signs of being pretty smart, so we’ll have to stay on our toes.

Once the people flow let up we hit the phone lines and started making all the follow up appointments we have.  In one week he will see his pediatrician, then the next will be with the pulmonologist and nutrition.  Then he will have to see the GI to check on his g-tube.  Mixed in somewhere will be PT/OT & Speech (but they will come to our home!) and something will happen with him being enrolled in the neonatal follow up program.  Thankfully he has to see his cardiologist, but not till september for that one!  My sister told me all these appointments are how you know you are a parent.  I’ll have to get better at it as I scheduled one of Greyson’s appointments for the same time as one of my Dr’s appointments, live and learn!

So it is 9:30pm and Greyson is asleep.  We finished his trach care a bit ago and made it through it OK.  We’ve done it a lot yet tonight, which is the first time we have been responsible for all his care he was, shall we say, not tolerating it very well.  If only he would realize that the kicking and screaming only slows the process down and makes it worse.  Of course I’m 34 and I haven’t figured that out yet so I don’t know why I expect him to!

So his home vent is here and he has been on it for awhile.  He is now on 100 percent oxygen (don’t worry it’s not bad!) at 1 liter.  With the new ventilator they don’t have a blender so he doesn’t get a percentage, you alter how much he gets by the flow of oxygen.  So 100 percent oxygen at 1 liter is comparable to being at 28 percent oxygen.  Another change made today was we are feeding him by bolus.  This basically means you hook a syringe up to his g-tube, dump the milk into the syringe and allow it to gravity feed into his stomach.  You have to be careful you don’t feed him to fast this way, but it goes a bit faster than the pump.  If  he continues to tolerate this (we’ve only fed him once this way) it will mean we won’t need a pump at home to feed him with.  This would be great as it would be one less piece of equipment we have to haul around all the time. 

Wow this is getting long.  Can you tell I’m just sitting in the hospital with nowhere to be for the next 40 hours?  Alright let me find a picture for you all and I’ll let you get some sleep.  Greyson will probably be discharged on Tuesday of next week, although there is some chatter that they may break the rules and let us go home on Monday.  We’ll have to wait and see if there is any truth to that.

OK it’s almost 11 and we have finally finished giving Greyson his meds and feeding him.  He is finally settling down (he was pretty upset, not sure if it was hunger, or reaction to needing his meds) and falling asleep.  I think he’s putting us through extra to prepare us for going home.  It’s funny how we’ve done all this a lot, yet now that it is suddenly “for real” it seems more challenging.  Anyway we are off and running toward the home gate!

Well today didn’t go as expected, we didn’t begin our living in period which means we will not be bringing Greyson home on Thursday.  The vents didn’t make it in so we won’t get them till tomorrow.  We will do our living in period starting tomorrow night till Friday, and then be ready to take Greyson home on Tuesday.  The reason for the delay is that they only discharge someone like Greyson on tuesdays, wednesdays, and thursdays.  This was a let down for sure, but we continue to believe that God has all this in control and will bring everything together at the perfect time.  It will be hard to wait a bit longer, but as always God’s grace sustains us.

The above video is from our walk last night.  It’s a bit short but hopefully it will make you smile.  If you have trouble viewing it remember to left click on it (nothing will happen but it will then be selected) then right click and choose play from the drop down menu.

Greyson continues to “come out of the fog” of the narcotics and every day acts more like the boy we knew before being transfered to the PICU.  It’s amazing how getting sick set him back in his development.  Today he was kicking his legs and swinging his arms and making a very unhappy face, everything a baby should be doing.  Then I changed his poopy diaper and he was very happy and continued everything stated above, but with a smile.  Speaking of poop (which I have come  to realize we haven’t talke about for quite some time) yesterday Greyson had a major blow out and I was not careful enough when I wrapped it up so as I took it to the scale (yeah do to Greyson’s situation we are blessed not only with the daiper, but we get to weigh all of them before throwing them in the garbage, oh joy!) it leaked out and pooped all over my hand!!  Now as I have stated before Greyson and I have a pact, no pooping or peeing on dad.  He’s upheld his part of the agreement so far, unfortunately I have to be more careful if I want to keep it off me!

Today we took Greyson for another walk.  We had to stay on his floor but did laps around the hall by the PICU.  The great thing was that he was awake this time!  He really seemed to like it.  He just kept looking all around like, wow we are moving around a lot and there is a lot of stuff to see, could this be the “world outside my room” that my parents are always talking about? 

Tomorrow Greyson’s ventilator comes in and will be delivered to the hospital (pray this happens, if something goes wrong he doesn’t come home on Thursday!).  We will also take over his care tomorrow around noon and will live in his room with him providing all his care for 48 hours.  While there is a pull out couch that makes into a bed (which I’m very familiar with as that is what I slept on for the 2 weeks before Greyson was born while Stacy was in the hospital on her head) one of us will have to be awake the whole time.  It’s OK if we nod off for a minute or two, but basically we have to be there to do everything which means we have to be awake and on top of it. 

Tomorrow we are also meeting with the nursing company, and one of the nurses who will be working with us.  Pray that they can line up the remainder of the nursing before Thursday so Stacy and I will not have to carry extra care duty and can find some times to sleep.  Alright, Lord willing this will be the last update from home (I came home for tonight to go to my men’s group and staff meeting in the morning, Stacy is still in Tacoma) as starting tomorrow, we aren’t leaving Greyson’s room till we can take him with us!!!!