Westfall Web

Today Greyson “woke up” and started looking at us.  This is the first time he has opened his eyes and actually looked around.  It was so great to see his eyes again!  Before when he would open them you could tell he wasn’t really there due to the drugs, but tonight he was all there and expressing himself quite well with his beautiful eyes.  He seemed fairly happy and spent a lot of time looking at both Stacy and I.

Greyson got a lot of visitors today.  His pastor stopped by to check on him and while he was there two friends came up from the NICU to visit.  They encouraged us a lot and we are so blessed to still have them as a part of our life.  It is a little challenging as they are not allowed to visit until after their shift (so they don’t pick up any bugs and take them back to the NICU) so we may not see many of the evening shift, but so appreciate knowing they are pulling for us.

We met with Greyson’s pediatrician this morning and believe he is going to be an excellent Dr. for Greyson.  All Stacy could say as we left his office was, “man, he’s tall!”  Basically he will be the central point person who helps us stay on track with all the Dr’s and specialists that will be a part of Greyson’s life once he comes home.  We also met with the pulmonary specialist and got a lot more good information about Greyson’s prognosis as well as the trach plan and how that is going to all play out.  He was optimistic but did inform us that  in all likelyhood this is going to be a long process. 

Greyson made it off the NO today (nitric oxide) and was able to make it through the day without receiving anymore of the muscle relaxers.  While his numbers are still not good (pressure on the ventilator and blood gas) they were slightly better than yesterday.  We are praying he will continue to recover and soon his numbers will be where they should be.  His Dr. thinks Greyson will be well enough to do the trach surgery sometime next week.

We know that God is in control and believe that Greyson is in His hands.  It is not easy to watch at times, but we know that God has great plans for Greyson’s life and pray continually that Greyson’s life would bring glory to God every step of the way.  Tonight we were praying with Greyson before we left and I prayed (as I often do with Greyson) that Greyson would know God’s peace.  Right when I said that Greyson jerked his arm as if to say, “yes!!”  He certainly is an amazing little man and we are very proud to call him our son.

Greyson continues to be very sleepy with all the sedatives and pain meds he is getting.  He is off the muscle relaxers (sort of) so we are able to see him open his eyes and look around as well as move a little.  They have given him muscle relaxers periodically through the day, just not on a continuous basis.  It is sad to watch as he is able to move he gets the shakes from coming off the drug. 

They have weened his nitric oxide down to 5 parts per million, and if all goes well he should get off of it all tomorrow.  They have also made changes to his ventilator (they’ve made quite a few changes all week) the major change for today was to change it to allow Greyson to take breaths on his own, with the ventilator supporting the breaths.  If that doesn’t make sense I’m not sure how to help, as this is a complex part of the ventilator.  Basically so far the vent has just been breathing for him, now it is is letting him try to breath and helping him take a breath when he tries.  The long and short of it is that it is a positive change. 

While I haven’t looked at his gas sheet today, it appears they have been OK.  His c02 is still higher than we would like, but I think the ph is within the range it should be (remember we have learned that while we would like all the numbers to be in the right range, the ph apparently is the most important).

Greyson’s pressure has also been a bit better today, this is the pressure it takes for the ventilator to give him each breath.  With the chronic lung disease (and the infection) his lungs can get tight and it can take more pressure to give him each breath.  The pressure lowering is one of the signs that he is doing a little better. 

They changed his antibiotic to a different one today as well.  As they identify exactly what bugs he is fighting they are able to tailor his antibiotic cocktail to what will best attack what he is fighting. 

So overal he is still a very sick boy, but is showing some signs of improvement.  As we know all to well, it is going to take time. 

Tomorrow we are meeting with a pediatrician to see if he will become Greyson’s primary Dr.  We will also be meeting with the pulmonary specialist to talk about the trach plan and all that means etc.  So tomorrow should be a brain filling day of new information.

I’ll get to that later, but here is a quick update and explanation.

 It appears we need to further clarify what is going on as in the hecticness we haven’t been able to make what is happening very clear. 

Point number 1.  The Trach.  Greyson has not received the tracheostomy yet, nor will he for probably at least a week.  He is to sick right now and needs to get past the infections he is fighting as well as have some of his vent settings lowered before he gets that surgery.  Once on he gets the trach he will be ventilated and will come home on a ventilator.  Over time as he grows and matures we will be slowly weening him off the ventilator.  While only God can tell us exactly how that is going to work, we are probably looking at a few months at least.  Once he is weened off the ventilator he will be decanulated, which is where they remove the trach and his throat will heal up.

Point 2.  Infections.  Greyson has now been diagnosed with three infections, this really doesn’t change anything as he is receiving antiobiotics already.  This really shows us how careful we will have to be, and the consequences of getting a cold.  While he doesn’t have RSV, his immune system just isn’t strong enough to fight off what normal kids could.  We will have to be very careful about what he is exposed to for a long time.

Point 3.  We learned a lot today about the whole ph c02 deal.  Basically the c02 is one of the things that affects the ph, so the ph is the more important number.  That said his c02 is back in the 60’s, but his ph is where it should be, so that is positive. 

Point 4.  Nitric Oxide.  This is not Nitrous oxide (laughing gas) but Nitric oxide.  What’s the difference?  Well that’s for a chemist to explain (I skipped all chemistry classes throughout my education!)  I can tell you that  nitrous oxide is more of a sedative, where nitric oxide works to dialate the pulmonary vessels and is a very effective treatment for pulmonary hypertension.  (Sounds like I took a class doesn’t it?  ha!)   Anyway Greyson was receiving 20 parts per million but was weened down to 15 parts per million today and seems to be handling that OK. 

They have taken Greyson off his muscle relaxers so we are starting to see him move a little again.  He is still heavily sedated, but is able to make little movements.  Stacy saw him crack an eye open today when his nurse Cathy came to visit him and started talking.  We think he probably recognized her voice and wanted to peek and make sure it was really her. 

Overal today has been a better day than yesterday.  As I said yesterday it will probably be up and down for awhile till he gets over these infections at least.  He’s a sick boy but is doing well to recover. 

BSU has already sent someone to start recruiting him to go to their school.  😉  No In reality this is his aunt Debbie who has yet to have her face posted on the internet.  She has visited before around thanksgiving, but since Greyson was in an isolete we didn’t use the picture since you couldn’t see her and him very well.  This picture was much better.

So today was an OK day.  Not near as good as yesterday, nor as bad as Saturday.  Greyson has been diagnosed with two infections, both seem to be somewhat staph related.  One is in his blood and one is in his lungs.  They think he got these from aspirating (breathing in) either throw up or his own secretions.  Either way it brought a foreign body into his lungs and caused a big problem.  They continue to play with his vent settings as his gas numbers jump around.  He had some gasses with c02’s very high, but they were down to 69 when we left for the night and his ph was looking better as well.  While he battles these infections coupled with the chronic lung disease his gas numbers are probably not going to be very stable, but they will work hard to keep them in a decent place. 

Greyson got started on lasix again which is a diuretic to help him pee off the excess fluid he is retaining.  He has A LOT and looks very puffy.  This is all part of being sick and should they should be able to get it all back under control once he breaks free of the infections. 

He is still heavily sedated so he doesn’t move or wake up.  This is best for him as they work to help him get better.  It actually is nice because he looks so peaceful as he sleeps.  The plan is still for him to receive the tracheostomy but he has to be stable before they can do the surgery, and his vent settings have to be quite a bit better.  Right now it looks like this might happen in about a week, but we will see.

So to recap and hopefully help in understanding–Greyson’s blood gasses have been very high for a prolonged period of time.  This was affecting his heart and would most likely begin to have other negative effects as well.  With his c02 numbers rising at the end of this week the Dr’s felt he would need a tracheotomy and ventilator to support his breathing.  This is what we knew on Friday night and went into the hospital ready for on Saturday.  What we didn’t know was that sometime probably thursday or Friday Greyson was developing these infections.  Everything collided on Saturday which is what made him so out of control and such an awful day for us.  Not to mention the fact that he got himself worked into a frenzy in a similar way to an asthmatic, and they had a very hard time breaking that cycle.  That is why his heart rate was so high and remained high until they were able to break the cycle and get him settled down.  He remains sick and has to be handled very carefully, but with the antibiotics should pull past this within a week, two tops.

It was great having my sisters Tammy and Debbie here to help us focus on something else.  While it probably wasn’t the most enjoyable visit for them, or the visit they thought they were going to get (they made these plans long before Greyson got so sick) they were a source of encouragement to us.

Greyson has also had a couple of his old (meaning former, they are actually young in chronological age) nurses stop by to check on him.  He wants to thank everyone for sending him well wishes and for offering prayers on his behalf.   We would also like to thank all our blog readers who have left us encouraging words.  We can have a computer in Greyson’s room now and they have been a real source of encouragment to us over the last few difficult days.

Aunt Debbie and Aunt Tammy arrived safely tonight and we stopped by and saw Greyson.  He is doing A LOT better tonight and we are very thankful for that.  He has some form of staph infection, they should know the exact kind by tomorrow.  Regardless of what kind they are already giving him antiobiotics to help him kick it and he seems to be doing better.  His blood gasses have been really good, his c02 on his last one was 57.  He has had at least one in the 40’s as well.  They are adjusting the settings for the optimal gas verses pressure on his lungs ratio so this will vary for a little while.  It has been so long since we have seen c02’s this low so we are just praising God for all he has done and putting us in the right place to get what apparently is the right treatment.

So what has been our modo through this whole experience?  God will give us enough grace for each day.  If one day is bad, remember that tomorrow is a new day.  Well I certainly feel that way today.  Greyson’s heart rate is back to normal and his blood gas is much better.  While today feels better it is not without its challenges.  Greyson has develped an infection which is never a good thing but they have him on antiobiotics now.  The sad part to us is really the looks of the situation.  Not the “perspective” of the situation, but literally the looks of it.  It is hard to see him once again with many tubes coming out of him and hooked up to so many IV machines.  While this looks bad it is not as bad as it seems.  Aside from the risk of infection that comes from any IV, he is receiving only a few more medicines right now.  It is just a change in delivery method.  Greyson is very sedated right now and will be sleeping peacefully probably for a day or two.  As they work to get him past this acute crisis moment they want him to stay calm and pain free, as do we!  Another positive aspect is they are probably going to try to begin feeding him again (they stopped the feeds because of all that was happening leaving the possibility that he would have to go back to IV nutrition for awhile, we are very happy it doesn’t look like that is going to be necessary).

They intubated him through his nose this time, so hopefully when he does wake up it will be a little more pleasant not having a tube in his mouth, but we’ll see how that goes when he becomes more alert.  Another change is that he is receiving nitric oxide gas as well as oxygen to help with the hypertension. 

So praise the Lord things are a bit better.  We still have a way to go but feel he is again in the right place at the right time to receive the best treatment.  As you can see he is now in a big big big boy crib and has his own room.  We are excited that he has a window and will receive a little sunlight, something he has never known so far (well in room B he was across the room from windows, but he’ll get much more light now.  We are grateful for this as well because it was not good for the mood in room E to always be so dark and without any natural light (room E had no windows to outside, kinda like my office but that’s another story….).

Well the day has not been a very good one as you have/can read by my last post.  Unfortunately it is still a very difficult day as we approach the end of it.  Something happened while Greyson was ventilated (probably he worked himself into a frenzy) and at one point he managed to unlock the lock that keeps his breathing tube in place.  About that time he got so worked up that his heart rate was soaring.  He spent most of the day with his poor heart beating at about 220 beats per minute.  This and everything else that was going on also lead to very bad blood gasses.  After working with him all day the Dr. talked to us about moving Greyson to Marie Bridge Hospital (this hospital is connected to the one Greyson was in, but has a PICU or pediatric intensive care unit)  They work with older kids and the types of breathing issues Greyson is now struggling with.  So we have just made it to the new hospital and they are working on Greyson right now.  They need to put a different type of tube down his throat to ventilate him better.  We believe we are in the right place but were unaware of how hard it would be to leave those who we have grown to love and come to a new place with a new staff.  We are praying they will be able to help Greyson and he will be able to begin recovering again.  It was hard to watch Greyson go from nothing but a cpap on him, back to IV’s, ventilator tubes, etc.  While it feels like a giant step back to three months ago, it is where we are.  Now we must learn to fit in to this new system. 

Stacy and I are exhausted as we arrived at the hospital at 6am this morning.  They have arranged for us to stay overnight in an apartment here so we are grateful that we will not have to go very far as we attempt to make this stressful adjustment.  We want to thank everyone for your prayers and words of support, they are an incredible source of encouragement to us right now.

Today has been a very difficult day.  Greyson went back on the ventilator at 7 this morning.  We were very thankful that Stacy and I were able to get here in time to give him some love before this happened.  Overal he took it pretty well although he has to be sedated quite a bit to keep him from fighting against the vent. To give a quick summary, his c02 levels kept rising and teh steroids were beginning to impact his heart.  His heart was also being impacted from the extra work it had to do because of the chronic lung disease.  If left alone this could eventually lead to heart failure or a host of other problems.  So after discussing the options with the Dr., the ventilator was the only real option.  So what will happen now is Greyson will get a tracheotomy (surgery to put a tube in his neck that will connect to the ventilator).  Once his blood gas is stable we will work on eating a little.  If he can eat all he needs (unlikely in this type of scenario) he will then come home.  If he can’t eat enough, he will get a tube put in his stomach and we will let him eat what he can and give him the rest through the tube. 

While this seems like an incredible negative outcome, it will probably mean he will be coming home much sooner than if we had been able to continue going the way we were (assuming we could have continued that way, which we can’t due to the rising c02 levels).  So pray for Greyson to stabilize on the vent, to allow it to work, that the trach surgery will go smoothly, that Greyson will thrive, and that mom and dad will be able to cope with it all. 

It is amazing the support we have received from the NICU staff.  They really have become friends in the time we have been here, and we are so grateful for them and all they do for us.  We certainly can’t claim to understand why God has chosen not to simply touch his lungs, but we are so grateful for all the miraculous ways he has touched Greyson.  We know that God can and will use this experience for His glory, and as always that He will give us the strength and Grace to make it through it.