Westfall Web

Greyson loved his frog so much that he didn’t want to put it down even when he fell asleep.  He actually held onto it for a few hours and kept his hold even when waving his arms around.  He also had his first phone conversation with his daddy who couldn’t come today.  I could tell that he could hear something but I’m not sure he had the look of recognition on his face, more like confusion. 

Greyson had very good numbers today, showing that he is indeed getting much much better.  His Co2 was 52 and his ph was in the normal range.  The doctors are fine tuning the exact drug and vent combinations to make these terrific results.  We are encouraged by this progress. 

Greyson also had an echocardiogram again today.  The Dr said his pulmonary hypertention looked better although it isn’t all the way cured yet.  He was encouraged by the results that they have seen in this short time.  They are also taking a second look at his PDA.  We haven’t talked about this in a long time, but it is still open.  They also found another area in his heart that is basically the same as the PDA, it is something that should have closed but remains open.  On Friday he will be the subject at a “cardiology conference” where a bunch of doctors will review and discuss his conditions and decide what actions are needed if any.  Sometimes I get a little overwhelmed and fearful when I hear that there is yet another issue to discuss or explore.    I’m praying that God will help me trust and will bring me peace.  Thank you to all of you who are praying for those things with me and Bob.

Sure it’s not the most comfortable thing being hooked up to a ventilator with a tube down your nose.  All in all though the people around Greyson (parents, nurses, respitory therapists) work pretty hard to keep him comfortable and happy.  He looks pretty content most of the time.

Nothing really new again today.  They made some vent changes to continue to try to get him in the range he should be.  There was some more discussion of putting Greyson on the surgery schedule for the end of the week, but we will have to wait and see as always. 

Greyson seemed to be smiling a bit today.  It is still on the verge of whether it is a smile or not and what it is in response to but it was fun to watch. 

Five months ago tonight Greyson came into the world.  It hasn’t been the easiest time, but he has been a real trooper each and every day.  There have been so many days where we never thought we would ever get to this point, so today we celebrate all that God has done in and for Greyson.  While we didn’t get him anything to celebrate (after all if you do to much he’ll start expecting gifts for everything at some point) we did take this card to him.  A girl from church ran up to Stacy on Sunday and asked her to take this to Greyson because she had made it for him.  It was very touching.

Greyson slept almost the whole time we were there.  He did wake up to say hi to one of the NICU nurses who visited him.  She was one of the nurses who had him within the first couple nights of his life. 

Greyson got off the turbutiline today so that is another small positive step.  We also met and talked to the Dr. who will be “driving the boat” for the week.  It was nice to talk to him and hear his perspective on where Greyson is and what the plan is for the week. 

Greyson continues to hang in there.  They weened the rate on his ventilator down a bit today and lowered the amount of terbutiline he is getting.  I don’t think I mentioned this, but if I did forgive me.  Anyway last saturday when Greyson first was moved to Mary Bridge we came in his room after they had worked him over and got him set up how they wanted him.  As we scanned the list of meds he was getting we noticed turbutiline.  We were both stunned.  Now we have become familiar with this drug in the last 6 months but only because Stacy was getting it in the hospital to keep her from having Greyson!  Maybe it means nothing to all of you, but I found it humorous that the drug that was to keep Greyson from coming out into the world is now helping him breath.  You might have to have my sense of humor, but I share it none the less.  Anyway he is almost off it and will probably get off it tomorrow.  This is another significant step in his improvement.

Another family in the unit let us come by and see their baby today.  It was very significant as their baby has a trach.  We got to go and watch them do a trach change.  While it will be scary at first it looked like something we will be able to handle.  It was so nice to be able to watch this and talk to these parents about the trach and getting set up to go home.  We are praying when Greyson gets ready that the pieces will fall into place quickly, as this family has been ready to be discharged for a month but has been unable to get the home nursing setup.  In the midst of all your prayers for Greyson’s healing, we’d appreciate everyone starting now to pray that this process goes smoothly and quickly when we are ready for it.

Today we talked to the primary Dr. for the week.  In the PICU there is one Dr. who “drives the boat” and works every day for a week.  Then the other Dr’s take turns working nights for that week and “keeps the boat afloat”.  It was nice to talk to her and hear her perspective on what is going on and where we are headed now.

From her perspective today is the first day Greyson has shown real improvement.  She seemed positive but said even if everything went perfectly from here on out we are probably looking at having at least another month before we could possibly bring Greyson home.  Anything less than perfect means it is going to take longer.  We are OK with that and will try to gear up to keep going.  Greyson continues to look better and open his eyes and look around.  He doesn’t move to much and we are unsure whether that is because of the drugs, how he feels (sick), or due to the fact that he has tubes coming from all over.  It is good to see him looking better though.  His blood gasses continue to be high, well at least the c02.  His ph has been pretty stable where we want it to be.  Hopefully as he continues to improve the c02’s will come down to a normal range and stabilize.  Right now they are saying towards the end of next week they will put Greyson on the surgery schedule.  This of course is provided he continues to improve.  He’s in God’s hands and we know that with God all things are possible.  We have to admit though that it is harder to leave him in the PICU than it was in the NICU for a variety of reasons. 

Today we put Greyson’s mobile up for him to look at.  I think he liked it, but is still dealing with being intubated as well as all the drugs he is on.  So he looked at it, but it didn’t astound him as it has in the past.  He continues to do OK, as the Dr. said during rounds he is taking baby steps towards getting better.  While we would rather take BIG steps, he is in fact a baby and baby steps towards improvement are at least steps in the right direction!

There really hasn’t been much change in his condition.  His blood gas (at least this mornings) was better.  The ph was in range and the c02 was in the mid 60’s.  His blood pressure has been on the high side and his vent pressure (the pressure it takes to give him a breath) has been higher than yesterday most of the time we have been here, but since they repositioned him it is looking better.  He has also come down a little on his oxygen level, although that is still a lot higher than we would like.

We had dinner with a couple of Greyson’s NICU nurses.  It was really nice to sit and visit with them.  They continue to encourage us both through conversations with them or notes that they leave.  One NICU nurse left us a nice card as she visited late last night after getting off work. 

Today as I was preparing for my next sermon (I’m preaching again March 2) I was reading the parable of the persistent widow.  This parable reminds us to pray without ceasing and with the expectation that God will answer our requests.  I know God has this situation in control, but also know that as his children we are free to petition him.  It is our prayer that he will work again in uterly miraculous ways to bring healing to Greyson.  While we know this can happen and pray that way, we also are willing to submit to God’s plan knowing He may be using this time in ways we cannot see.  As always our primary prayer is that God would give comfort to Greyson, and that God would be glorified through this process.