Westfall Web

Greyson really likes to help with his suctioning these days.  As you pull the catheter out (which means both hands are busy) he likes to grab it.  Then when you say things like, “hey don’t grab that!” he smiles much like is seen in this picture. 

So the vent changes continue but Stacy tells me that the settings he is on today is REALLY what the Dr. wants it to be at.  So he is at a pressure support of 17 (12 with a peep of 5).  I’m just hoping we can leave it alone for a little while.  Greyson did have a blood gas today before they turned his vent back up and it was good, his ph was 7.37 (normal range is 7.35-7.45) and his c02 was 52 (ideally we would like his c02 to be under 50, but for Greyson this is not bad at all. 

The eye Dr. came by tonight and saw Greyson again (same eye Dr. that saw him in the NICU).  He came in and asked why Greyson was still in the hospital, to which Stacy thought, “can’t you see the ventilator tubing!?”  Of course she didn’t say that.  Anyway he looked in Greyson’s eyes and said there was nothing remarkable.  No scarring and the back of his eye looks really good which means his vision should be normal.  So he may need glasses some day, but that will not be related to his prematurity, but rather genetics.  Hopefully he’ll have his mothers eyes and not his fathers and won’t need glasses.  Either way it’s great to know his eyes are “OK”.  God has certainly been watching over him.

Speaking of eyes the one area the eye Dr. was not happy about was the scratches by Greyson’s right eye.  He is really waving his arms around now and gave himself quite a scratch.  We will have to stay on top of those fingernails.  Well it’s late again so we need to get to bed.  We have to try to get some sleep before Tuesday when we take over his care. 

Well what is there to say about today?  We came home early last night from the hospital (yes both Stacy and I!) and worked on getting things ready for Greyson’s homecoming.  Then we got up and hit it pretty hard again today.  I even mowed the lawn which was actually enjoyable since it was such a beautiful day.  I think we are pretty much ready, I have a few things I’ll finish up tomorrow or monday night.  Right now the plan is that Stacy will not return home until she brings the child with her.  Of course I’m going to go over and help make sure that happens as well ;). 

We gave Greyson a bath, did his trach care, gave him his medicines, started his feeds, and played with him.  That about sums up the day.  Not very exciting so I’ll tell you a funny thing that keeps happening.  It’s slightly technical (which accounts for why it keeps happening) so I appologize if I lose you.  OK so it has to do with Greyson’s ventilator settings.  Every day when I come in I check them to see if there has been any changes.  Well every day I come in to find his pressure support (which should be 14) changed higher.  When I ask about it I am always told that it is right, or that they lowered it down to 14.  But usually it is set at 19.  Where does the confusion come?  Well it all has to do with how the ventilator works.  With this ventilator you set the pressure support number and that number is added to whatever the Peep is which gives you your pressure support number.  What seems to be happening is that people read in the order that the pressure support should be 14 and then come in and see the pressure support number reading 9 (which is correct, 9 plus 5 which is Greyson’s peep,  is 14).  They think that they need to turn it up since the order is for 14 and it reads 9 so they do.  Then I come along and ask about it and they turn it back down.  One day last week I came in and it was reading 19 (which is a pressure support of 24!!)  What we think happened is someone thought you subtracted the peep from the pressure support but we are not sure.  After inquiring about it all week we are starting to suspect that it may be the Dr. who is doing it.  This is not based on any evidence, but the RT’s are always running around yelling “WHO CHANGED THIS!!!”  It’s really kind of funny especially since it keeps happening.  The only down side is it means for awhile when we are not there Greyson is getting more support than he needs, but at least we check it once a day and get it back where it is supposed to be. 

So after all that when I asked about it today (it was up to 19, or 14 with a peep of 5) the RT went and clarified with the Dr. and came back and turned him down to 12 (7 with a peep of 5) so this is the lowest he’s been.  He is also back down to 28 percent oxygen which is good.  So he is doing great.  We are continuing to pray for the remaining nursing shifts we need to cover as well as that his blood gasses will be good so the pulmonary specialist won’t put the breaks on his homecoming.  Again Lord willing he’s coming home on Thursday!!

Well today turned out to be another BIG day for the Westfalls.  Physical therapy came and worked with Stacy and Greyson while I was at work and that went well.  Then when I got there Stacy was talking to the discharge planner about home PT and OT and other home stuff (always like to hear talk about home).  We then met with the rep for the ventilator and found out that Greyson’s ventilators (he will have two, one stays at home and one is used as a “portable” for outings and also serves as a backup for the primary vent) will be at the hospital Tuesday night.  So we will get him all hooked up to his own ventilator and we can all get used to it before he comes home.

So there is a verse in the Bible that says we shouldn’t say “tomorrow I will go here or there, or do this or that” but rather you should say, “If the Lord wills I tomorrow I will go here or there, or do this or that”.  Why is that important?  Well we have put our faith and trust in the Lord throughout this whole ordeal and are now at the place where we say, “If the Lord wills, Tuesday and Wednesday we will stay at the hospital in Greyson’s room (around the clock) providing all his care so that on Thursday we can take him fishing”.   Betcha didn’t know Greyson likes to fish did you?  Well for those who don’t know the people in the PICU are ……….well I wouldn’t call them superstitious but whatever you call it when you think saying a certain word will jinx what you are talking about, which in this case is bringing Greyson home.  Catch all that?  Yep Lord willing we are scheduled to bring Greyson home this coming thursday.  We are still short a bit on the nursing so keep praying that will fall into place, but even if that doesn’t it looks like we have enough to come home, we just will have to do more of the care ourselves.  So pray he stays healthy and the pulmonary specialist will sign off on him coming home cause we have a fairly firm date now!

In other news Greyson got his picc line out today, which isn’t evident in the picture as the picture is a couple days old.  I went off and forgot the camera again today.  Anyway keep us in your prayers as there is A LOT to get done, Greyson is scheduled to come home in less than a week!!!

Well the big day has finally arrived.  No not going home day, but getting out of the room and going for a walk!  Tonight we loaded Greyson up in his brand new stroller (we had to buy another stroller for twins due to all the “accesories” Greyson has to travel with) and went for a walk about the hospital.  We walked around his floor and then went down through the cafeteria and down to the second floor where lets just say we dropped in on some old friends.  You would have thought Greyson was a celebrity!  Lots of people gathered around and were taking pictures, it was quite the ordeal.  The only down side to the whole deal was that Greyson was all tired out and basically slept through the whole experience!  How’s that for timing?  Finally gets to get out and see the world (well hospital anyway) and all he does is sleep!  It was late so I guess it is good that he’s sleeping during this time.  I have to admit I was a bit nervous for a variety of reasons.  First time taking him out (we had an RT with us the whole time as backup), then by going to see old friends I was worried we would get people in trouble, then his sats dropped a little but came right back up.  Anyway with all that I was extremely excited and nervous, which led to me sweating like crazy!  So we have video of the experience (thanks family for the camera!) but it is way too late for me to try to get that together and onto the blog so you’ll have to live with the pictures.  I was gracious and am including three pics to symbolize the magnitude of the day though.

Part of Greyson being tired could be because Stacy and I gave him another bath tonight.  This time we did it completely by ourselves.  No one else was in the room.  We also did his trach care (minus the duct tape) basically on our own as well.  We did make sure to check the trach ties a couple times to make sure everything was good.  We are feeling pretty comfortable with everything and are slowly getting used to moving Greyson around with his tubing.  That means we are ready to bring him home!  Tonight we learned how to work the stroller (had to have our RT wait an extra half an hour as we figured out how to hook it all together!) and load everything up.  I was tempted to just walk out the door to the car, but I decided the RT may not think that was such a good idea.  Keep praying for those nurses (the ones we need to hire for home care!) as that is the main thing standing in our way right now.

Ok it’s rather late and you all should be in bed.  Are you?  If not, why not!??  I’m going there right now.  Tomorrow I have to try to wake up and get to work for awhile before jetting to the hospital to be trained on the ventilator by the home supply RT.  Basically this is redundant training since the hospital staff trained us but the home suppliers have to do it and it never hurts to go over this stuff extra times so we know it inside and out.  Sleep well everyone and thanks for your prayers and encouraging words!

If we had to sum up today with one word it would be, “playtime!”.  Greyson was awake A LOT today and was very playful.  I stayed the night with Stacy in Tacoma (we now live in different towns in case you didn’t know) and got to spend the day here with them.  Today was supposed to be a very big day for a couple reasons, one of which unfortunately never materialized.  So we’ll save that for another day.  We think Greyson figured out that the wrist rattle was making noise when he moved his arm, because all day he has been swinging his arms around (and hitting himself in the face, which is really funny). 

The other reason was because we were having this big care conference.  Well we had it, but it wasn’t what we were expecting.  Of course I’m not sure what we were expecting since we’ve never had one before, but this was not it.  The one thing that did come out of it was planning a tentative date for discharge.  While this is great, the one down side is this was just with the home ventilator supplier, so the date will not be certain until we have nursing lined up (pray for this as right now they don’t have any nurses lined up, the couple that they thought they had fell through) and the Dr. signs off on him going home.  So we now have a couple dates, but I won’t release them as there are to many other factors to make them very concrete.

We did go shopping tonight and I was met face to face with the “real” cost of having a child.  Today was the day it hit me that once Greyson comes home, insurance will no longer pay for all the “incidentals”.  Things like diapers, wet wipes, and a host of other things that we simply grab when we need them, will soon be things we will have to pay for before we can grab them.  Of course if this means he is home I am more than happy to pay for whatever he needs.  

OK so here is our scary stories for the day.  Last night Stacy and I did Greyson’s trach care as we do almost every night.  No big deal we are getting pretty comfortable with it.  He was pretty much going to sleep and we were watching him when he started to de-sat.  He got down to the 70’s so I decided to bag him.  We got him back up to 100 percent and Stacy suctioned him and all was well, but when we put him back on the vent down he went again.  By this time the nurse and RT were in the room.  They felt like we had it under control but helped us track down the problem.  This took awhile but on a hunch the nurse finally took out the end tital c02 sensor.  Once she did his volumes doubled (a good thing) and his stats went right back up.  The sensor is new and it seems it had gotten clogged up and was not allowing him to breath correctly.   So that was the first scary part of the night (actually it wasn’t that scary we simply did what we were supposed to do until the RT helped us solve the problem, he never turned blue so it was all good!)  But there is more.  We heard today that sometime last night (after we left to go to the parent appartment) the RT came into the room because she heard Greyson crying (because Greyson’ s trach is cuffed you shouldn’t hear him cry as that means he is not getting a good seal).  Anyway she came in and Greyson was crying pretty loud, and when she looked she saw that his trach had come almost all the way out.  The “cuff” was staring her in the face!   Not good at all since the cuff should be down in his esophogus.  She got a bit freaked out but got him all back together.  This is why it is so important to ensure the trach ties are on tight!  

Tonight when we did his trach care we took some extra precautions and wrapped the ties with duct tape, so I think it will be a safe night (ummmm I am assuming everyone knows I’m kidding here). 

In case you were wondering, Greyson does indeed have very kissable cheeks.  Today he spent most of the day sleeping even when I tried to roust him, but one time he woke up fussing just a bit and so I picked him up and held him to my chest.  It was quite a feat for me to get him there.  I am still intimidated by the vent tubes and they can seem so inflexible and unmanagable and short.  Well, anyway, I was rewarded for my courage and hard work when my little boy softly laid his head against my shoulder and gave a little snuggle of relief.  That is the mommy moment I was looking for today. Daddy showed up later and we had bath time.  Greyson was being so cute that he had nurses going out to get other nurses to come in and see him in the tub. The pulmonologist stopped by today to check in.  It is hard to tell if he is pleased by his progress but he didn’t seem displeased.  We had a few other visitors today, some Nicu friends and also a friend from church who is in nursing school happened to be visiting here for her class today.You know how they say that it takes 10 good comments in a day to overcome a negative one?  I just want to tell you how thankful I am for the people who encourages us through words each day.  While Bob and I would certianly characterize our experiences here at the hospital as positive, there times when messages of negativity come our way.  Sometimes a sentence spoken casually by a doc or staff member can leave us deflated or feeling defeated in a moment.  God brings us strength to overcome these obstacles and he has used so many of you to bring encouragement, peace, and hope at the exact moment it is needed.  Praise God for his provision to us to meet each day and its challenges.