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.
My goodness how many infections can a person have at one time? He is such a little guy and doing such a good job to fight off all of that. I’m glad today was a better day and will continue to be better, even though I know they say there will be some bad ones. I’m praying for strength for all of you and me too.
Bob and Stac, Please know that so many of us are right with you thru this bad time…Our thoughts and prayers are so focused on you and Greyson and we just continuely hold you all up to our Lord asking for peace, healing and grace with an unending amount of strength to get thru all of this….I just want you to try and feel our love and support. I wish so bad that I was there to put my arms around you and just hug the fear and fatigue away…I love you all three so much and just want you to know how very much we care…God bless Greyson’s little heart and lungs and body and we just pray so much that God will heal him as only He can….Thank you again so much for keeping us all up dated daily.. Our love and support to you all….Aunt Sue
It’s amazing how much you end up learning. I think that if Rachel or I were to go to nursing school we should get credit for having a long termer in the NICU. I forgot to say in my last comment, when Greyson does get his trach, be as hands on as possible with trach care and suctioning and all that goes with it. Pretty soon you guys will be the experts and the nurses will just be there to be to assist you. Greyson sounds a lot like Eva. He’ll go at his pace, not what the doctors want or what you want, but what he and God want. God bless.
Nathan, Rachel, and Eva
Well Greyson…when he decides to do something he sure gives it is all huh? Three infections? Bob is certain that he is just expressing himself the only way he knows how but really I think you could tell him that he doesn’t have to do everything quite so big! I can’t begin to tell you how nice it was to be able to visit and see him. Even though he was not himself we were amazed at how big he has gotten. He is so adorable (even if we didn’t get to see his eyes) and Bob and Stac there will always be something special about packing a pic nic in a suitcase now for Deb and I 🙂 We love you guys so much and cant wait to hear what God has done today for the three of you. Hold on to each other and take care of each other.
Love,
Tam
Dearest Bob, Stacy and Baby Greyson, each day we check the blog to see how our little “Miracle Baby” is doing. We want you to know we have you in our prayers and thoughts all the time. I talked to Sue last nite and she told me our little guy is sick. I quess I didnt look at the current page yesterday. Bob and Stac I know that God is merciful and has given you the grace you need for each day. We all think of you and are praying for your little guy. Just know your in our thoughts. We want you to know how much you are loved and thougt about daily. May the Lord be with you and keep you strong, we ask for his mercy and the healing of Greyson.
Love Aunt Fran