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.
We are thankful that today brought a little relief. I thought it might encourage you to know that more people than ever are praying for the three of you. I am recruiting people every chance I get. It is good to tell the amazing story God is writing with your lives. I really believe He is just getting started with the three of you and there will be page after page of wonderful ways that he takes care of you and provides for you and loves you for years and years to come. He is using you to draw us all closer to Himself. Thanks for living in such a way that surely brings much joy to your Heavenly Father. We love you all!! Sleep well sweet baby Greyson!
Greyson continues to be the center of our daily prayers. We are sure rooting for this little guy to get well and get home just as soon as possible. Please make sure you take care of yourselves and try to get some rest. I hope tomorrow brings good news and a little guy who is feeing a little better.
Take care,
Karin OT from work
We are so glad to hear of improvements today even if only small ones. He sure is a cute little one. We will be praying that all the decisions the doctors will be making will only make Greyson better and better. As always God is in control and we need to put all our trust in him. He is hearing our prayers. My prayers tonight will also be for rest and reassurance for Mom and Dad and rest for Greyson. Dad and I love you all so much. Only God knows how much! Blessing and rest well. Mom and Dad.
So glad to hear that Greyson is doing a little bit better today. That is GREAT news and we will be excited to hear it even if they are baby steps. We offer words of encouragement because we love you and though sometimes we may say just what comes to mind the intent is to just let you know how much we love you and that we are praying for you. Remember that you three could not be in our thoughts any more than you have been since we found out Greyson was coming and your willingness to share your struggles encourage us to continue to be steadfast as you have been. If Bob can do it……so can I with God’s help :). Its been a long road and I’m sure you and Stacy are exhausted! While Greyson is resting and recovering don’t forget its good advice for you and Stacy too. REST and RECOVER and “feel the love.”
Love Tam
We are so thankful for even small signs of improvement and will hold fast to those positive thoughts….I pray that you, Bob and Stacy will have clear minds today and can really focus on the meeting with the possible primary doctor for Greyson and this will be the right one that God has choosen for him. It is so important to have just the right one….I will especially be praying for the outcome of that visit today…..We have to be encouraged by Greyson progress and know that the extra rest he is getting right now from all the medications is probably what will help him the most…We love you all so much and will contine to pray without ceasing for you all….Aunt Sue..
I am so pleased that we can continue to follow Greyson’s progress now that he has left our unit. It is so rare that we can follow kids after they leave our care. Thank you for sharing your blog with us at the NICU.
Sounds like he is doing better since I saw him last, though we all know there will continue to be good days and not so good days. However, as he starts to feel better, be sure to let the PICU staff know how much of a little Houdini he is when it comes to self-extubation! I will never know how he managed to pull his tube out with no hands a matter of hours after a face tape change! Nor will I forget it! He certainly has a few tricks up his sleeve to say the least.
Remember to take care of yourselves; he needs you to stay strong!
I am so glad Greyson is a little better and pray each day he will be a little stronger. He is such an amazing little guy and with God’s help he can do anything. I am praying you are better Bob and that Stacy will stay well. Please know that daily we are praying for strength for you three. Love you
We are praying for your beautiful family in this difficult time. We pray for strength, peace, comfort and healing for all of you. Please know that we hold you in our hearts each day and know that the Lord is working in all our lives through Greyson’s life. It is good to hear that he has improved a bit today. We’ll keep a close watch here and keep praying for God’s grace as you face each new day.
May the Lord bless and keep you in His loving arms. We love you.
Cousins Jenell, Jimmy, Isaac, Elizabeth and Gabriel