Westfall Web

Today Greyson was dressed to play in his Boise State outfit that his aunt sent to him.  The problem is while he was dressed to play he was to sleepy to actually engage in any play time!  Stacy tried her best to get him to wake up by playing “criss cross applesauce” on his back (which  totally made him jump when she got to the “pinch” part! 

Of course then when it came time to go Greyson woke up and was wide awake!  So we stayed longer than we were planning on staying, but were still able to get back in time to wrap up some things before it got to late.  Since he slept pretty much the whole time there is really nothing new to report (c02 was the same as the night before, 65).  

Oh almost forgot!  I have another diaper story!  It’s not that great but it is something.  Skip it if you want!

When we got there Greyson was in his bed and so Stacy took him out and I held him while she went to go pump.  While she was gone Greyson started getting really upset. I put him in a couple different positions but nothing seemed to be working.  The nurses even came over a couple times and tried to get him calmed down.  Every time we would start to get him settled, he would get upset again.  Well he smelled a bit (although this does not mean he needs a diaper change, sometimes it’s just the smell of his corner!) so I stood up and tried to get him calmed down.  “Greyson if you’ll settle down, I’ll keep working till we find what is upsetting you so much.”  I promised him.  So he settled down a bit and I put him in the crib at the bottom on top of a pillow.  You probably need to realize that this was happening right during shift change so nurses were busy reporting to the oncoming nurses and doing various things so there was only two nurses in the room, neither of them were Greyson’s nurse and they were busy with report.

Anyway I looked in his diaper and sure enough, it he had pooped.  Now you can’t lay Greyson flat in his crib because he has a wedge (see picture from a few days back) and the pillow was slanted so Greyson was kind of more on his side.  So I was working to get the diaper changed when suddenly I realized I didn’t get a wipe wet to wash him off with.  Hmmm…….what to do.  Greyson is kicking and squirming because he is uncomfortable (and I think had an upset stomach judging from the looks of his diaper).  So finally I prop him up on the other side of the pillow so he is rolling into the wedge and step over towards the sink.  Every time I would take half a step Greyson would move a little and I would rush back to him and make sure he wasn’t going to roll into the bars on the crib.  This went on for at least five minutes of me standing half way between the crib and the sink looking back and forth like, “what do I do now”?  Finally I made it to the sink and got a wipe.  All the while I’m thinking “If he rolls over this will be bad!”.  I got the wipe and he didn’t move (turns out I had propped him up better than I thought!) got him cleaned off and put the new diaper on.  Well they were out diapers in the size Greyson uses so I had to use a diaper that was really big.  He’s squirming, I’m wiping, it was quite a mess.  Finally I just put the new diaper on, taped it somewhat up, and picked him up to calm him down.  So I’m standing holding him over the crib with his shirt up to his chest with a diaper that was literally hanging by a thread.  By this time the nurses who were there were finished with report and one came and helped me get him calm so I could finish getting him buttoned up.  So what’s so funny about that?  I don’t know other than this whole process took over a half an hour and consisted of basically one conversation, “work with me buddy and I promise somehow we will get you cleaned up and comfortable again”.  Greyson kept looking at me like, “yeah, you keep saying that but you really should be done by now!”.  What can I say this was my first solo diaper attempt since he has grown so large, and the first solo in the bed with the wedge.  Overal I didn’t get pooped on so I think it was a success!

Man I love my son.  I can’t begin to describe how much joy he brings me.  I know the same is true for Stacy as well.  We are so incredibly blessed.  Today as you can see Greyson spent some awake time interacting with us.  It is so cool to see him look around and focus on things.  We took a toy frog shaped like a rattle in and have been showing it to him for the last few days.  It is interesting how the longer he looks at something the more he focuses on it.  It seems like each day he looks at this toy more.  We are hoping the mobile we ordered for him comes today so we can take that in for him to look at. 

Basically nothing new on the medical side.  His c02 was 65.  He did see the pulmonologist who really just suggested they start Greyson on lasix to help him pee off excess fluid.  He also suggested working at keeping Greyson’s oxygen saturation above 90 percent.  This means they may be giving him more oxygen to keep him up there but should not be a problem since he is older and his eyes should be able to handle the extra oxygen now. 

No I’m not choking Greyson.  He has enough trouble breathing!  He was pretty upset so I sat him up and held him with my left hand while I patted him with my right.  He woke up and started looking all around for quite awhile.  I had to keep my hand like this to ensure he wouldn’t decide to do anything crazy with his head as he looked all around the room.

Today had a bit of a rough start.  Nothing particularly with Greyson but simply the stress of the situation.  Life can be hard to juggle sometimes and the stress of it all can be hard to cope with.  This morning we were really struggling with some issues and prayed together before I (Bob) left for work.  We thanked God for blessing us with Greyson, and for the way He has given us the strength for each day.  We thanked Him for the amazing way he has provided for us, and asked Him to keep our focus and trust on Him, and Him alone.  Well before I could even get to work Stacy called me with some incredible news that related to our previous tension.  Once again God has reminded us that He is in control and that we can completely trust Him.

So what became of all the blood gas results from yesterday?  Not a lot.    They did another blood gas at midnight and his c02 was back down to 56.  The Dr. did change his canula order so he is now on cpap for 8 hours and nasal canula for 4.  This seems like a big step backwards but hopefully it will help Greyson in the long run.  He has been through so much we just wish we could do something to make it better for him. 

On a humorous note Greyson got another bath today and decided to pee all over Stacy and the floor before she got him into the water.  I was out making a couple calls for work and missed it but was glad that once again it was not me that Greyson went on.  The part of the bath I saw made it evident once again that Greyson loves bath time. 

Greyson got another chest x-ray today and it showed his lungs were still quite white and cloudy.  This indicates the chronic lung disease as they should be black.  We are not sure if it is worse than the last one, but definately not any better.  The Dr. has put in a consult request for the neonatal pulmonologist to come and look at Greyson.  We knew Greyson would see him when he moved upstairs as he follows all the babies who go home on oxygen, but are not sure what will happen with him seeing Greyson now.  We are hoping he has some good news or a good plan to help Greyson with his breathing as we just haven’t heard much encouraging words regarding his chronic lung disease.  Hard to believe Greyson is 17 weeks old tonight.  He’s come a long way, and we cherish every moment we get to spend with him, which unfortunately is never enough.

OK just kidding it’s really just Greyson.  While from this angle he looks huge, he is really just a healthy size of 8 pounds 5 ounces.

You know Stacy and I just realized that we are extremely lucky.  It’s not every set of parents who have the opportunity to share daily baby pictures with a willing audience!

Today was a fun day hanging out with Greyson.  We got there early after picking my mom (Bob’s) from the airport.  It wasn’t long before Greyson was wide eyed and alert.  He was pretty cranky until noon, when they took off the cpap and put on the canula.  He likes the canula SO much better!  Of course we would all love to honor his request (not so much a verbal request but it doesn’t take long to get the message) to leave him on the canula full time but that just can’t be done yet.  The reason for that was pretty apparent today.  I believe Greyson’s c02 was 76 last night, not good.  So finding out exactly what is happening with his c02 can be a bit difficult when he is on the canula for 8 hours, then off for 8 etc.  So he had the bad c02 at midnight while he was on the canula and had been for 4 hours.  So to attempt to see what is going on they tested his gas today at noon after he had been on the cpap for 8 hours.  His c02 was down to 59.  They then put him on the nasal canula for 8 hours and tested him again.  As of 8pm his c02 was 71.  So what does all this mean??  How should I know I’m not a neonatologist!  OK it seems to show that the nasal canula does place a considerable strain on Greyson’s breathing.  I don’t know yet how these findings will play out in the orders, but to me (again I’m not DR!) it is showing that he is doing OK on the cpap, and can handle the nasal canula some, but not full time yet.  He does seem to be making progress so it seems he just needs some more time to grow lung tissue until he can handle the canula full time. 

One funny story from today:  Greyson had been very alert for a couple hours when we decided to go get some lunch.  My mom and I were talking to him and playing with his hands.  All of a sudden Greyson took his right arm and with clenched fist shook it in the air three times as if he was cheering.  Hard to get the full effect by typing about the experience, but it was really funny, especially because I had just been talking to him about the need to keep his thumb on the outside of his fist so when he punched he wouldn’t break his thumb. 

So probably no midnight gas tonight since he had one at 8pm.  I don’t know when his next one will be or what will be happening so tune in tomorrow night when we all learn what the little fellow is up to.

Greyson got new orders today to be on the canula for 8 hours and on the cpap for 8 hours.   Once he is stable on the canula full time he will be extremely close to coming home.  Praise the Lord we are getting closer!

His gas was 67 last night.  Stacy called in tonight while I was at church and found out that Greyson has been really mad all afternoon.  Aparently at one point he was requiring 100 percent oxygen.  This sounds scary (and it is!) but is probably caused by him crying so hard.  When he works himself into a fury he screams and breaths some through his mouth.  This process uses up what little reserve he has quickly and can cause him to need extra until he settles down.  When Stacy called back he was doing better, possibly because they had put him back on the canula which he seemed to like.  Hopefully that is all it was.  It’s hard to know when you are not there, and hard to hear that you child is inconsolable.  Anyway he’s doing fine now and we will be there early in the morning.

Well I was feeling a little better today and pretty confident that what I’ve got is not what is going around, just congestion from allowing myself to get run down, so I allowed myself to go visit Greyson today.  While I feel very certain I don’t have anything catchy, I made sure to err on the safe side and took extra precations to make sure I didn’t pass on any germs.   Greyson didn’t seem to mind being on my lap and I don’t think the mask freaked him out that bad.

Greyson had a two OK numbers today.  At midnight his c02 was 60 and at 10am it was 67.  They did an extra gas today to see how he was doing at the end of his canula time.  I’m not sure what that number means, but at least it was under 70 and it represents how he’s doing when he’s working the hardest. 

Stacy gave him another bath today and he got kind of cold after it.  After he was dressed Stacy pulled him up to her and he pulled his arms together in front of him and snuggled right up to her to get warm.  I missed this as I went to the store to try to get him a mobile.  I was unsuccessful in locating the one we need, but we will order it off the internet and get it to him soon.