Well unfortunately Grammie Jo had to head back home today. I think she had a good visit. Today we had fun playing with him before she had to hit the road, and boy was he enjoying it. This could be the most smiles we have got out of him in one day. Even at the Dr’s he was happy and smilling. Perhaps that is because the neurologist said he was doing very good and that there wasn’t anything to be concerned about at this point, just to keep stimulating his brain by introducing him to new stuff, songs, etc. Then we went to the Pulmonologist and Greyson did well on his c02 test (OK it’s not really a test, but they hook him up to what is called an end tital c02 monitor to see how he is doing with c02). Today he was averaging 3 or 5 points lower than last time, which is positive. Then the Dr. unhooked him from the ventilator and we watched him for two minutes. Greyson did great, smiling and playing around with his hands. You would have thought he was still hooked up to the ventilator if you didn’t know better. His oxygen saturation stayed good and his c02 stayed the same for the whole two minutes. Soooooooooo……..starting tomorrow we get to give Greyson two breaks off the ventilator (once in the morning and once in the evening) for three minutes each time. If he does well we will increase the time off by one minute every day until he is off the vent for 15 minutes in the morning, and 15 minutes in the evening. At that point we will wait till we see the Dr. again (only a week or so) to see how he is doing at that point. If all is still going well we will work on weening him further off the ventilator. We are praising God that we are at this point as it is the beginning of the process of getting him off the ventilator. It will still take some time, but we are so excited to be able to begin the process. God is good!
Unfortunately the Dr. visit didn’t end all that well for Greyson. We have to continue to monitor his lytes to make sure he is doing OK with his body chemistry. Well they poked him twice in the arm and both times were not able to hit a vein and draw the blood needed. Then we went downstairs and another person tried in his hand, without any luck. Finally the IV therapy lady came in and poked him in the head (which sounds bad but really isn’t) and got the blood they needed to run the tests. The really sad part about all that is that Greyson was crying really hard, and for the first time ever actually had big tears running down his cheeks. It was really hard for me since I was the one holding him down while they poked him. I could handle him crying (seen that before and I know this is necessary) but man to pull out the big tear drops for the first time just about broke his dads heart looking into that sad sad face with, “but why are you doing this dad?” written all over it. I’ve told him about a thousand times already today that I was sorry but we had to do it to make sure he is OK but somehow me telling him doesn’t make it OK for him. There will have to be extra father/son playtime this week to make up for today. I’m glad he loves me inspite of it all (as evidenced by some of the looks he gave me after it was over). Ever wonder how much it pains God to watch us go through something that we need to go through for our own benefit? Must be something like today.
Congratulations Gresyon!!! You are doing such a good job breathing on your own! I know your parents are very happy. Getting a little time off the vent will be really fun time for you so work hard so that you can have more and more time off the vent ok? I am so very sorry too that it took so many times of being poked before they actually found your blood. Aunt Tam has to get poked a lot too to have her blood checked :(. Today will be better and you can just play and read and sing with no poking!!!!
Bob your analogy of God is a great one! Maybe if we thought more like that we wouldnt do some of the stupid stuff we do huh? Glad to hear such great news though.
Stacy……You look great in this picture!!!! Are you finally getting a little rest?
Love to all three of you,
Aunt Tam
Bob, watching your child cry breaks your heart. I am so tickled that Greyson is doing so well, I just knew that was what the dr. was going to say. Finally positive things and no scarry things. I would love to be there to help stimulate him, I love playing with him and seeing those smiles makes a person smile all over. I loved singing to him and I could tell his favorite was You are my Sunshine. Give him a kiss for me.
Love ya
I have 1 question. When you unhook him from the vent, what about his o2? His he still hooked up to that or what?
Great news! How exciting is that for all of you (and us!) God is good and what a wonderful analogy for us to think about! Thanks Bob! Tell Greyson we are sorry he had to be poked so many times! Poor little guy! Take care and know how much you are loved! 🙂
It is so exciting to see Greyson thrive under the care of his mom and dad. You are doing a superb job! We join you in thanking our great God for working all of these things out in Greyson’s life. It is so good to hear that he is doing so well. Stacy, you make such a pretty mommy. Greyson just lights you up! We love and miss you!
Good job li’l Greyson. Now, keep working it. Because, when you get just a little older, dad will take you out for icecream after the doctors. Or the doctor will even give you a sucker! But be careful man, you’re about ready to make your dad cry too. And the doctor doesn’t give suckers to people who cry unless they’ve been stuck.
Also, my prayers for you, soldier, on your overcoming ventilator resistance training. I know you’ll give it your best. We all want you to be strong enough to beat that thing. Look to God for your strength. And I’ll be looking forward to seein’ that ol’ thing gone.
Hi Greyson, Stacy and Bob! It was so fun coming and playing at your house. I had such a wonderful time and I am so totally amazed at your regiment that you all go through each and every day and night. What a fantastic job you all are doing. Greyson, Grammie is so proud of you with the progress you are making. You are such a fun little boy to be around. I loved reading to you and playing with you. I hope Grammie can come back really soon. I am missing you already. My heart is just about to burst with the love and admiration I have for your sweet family. I thank God for sharing you all with us. Blessing and have a wonderful evening….Gram
Greyson, Bob and Stacy – what wonderful news! Keep up the good work.
I looked back through some of your blogs and what a very, very long way you have all come. God has truly created a miracle and we thank him and we thank you for sharing him with us.
Rest well young Greyson and be well. Good night Stacy and Bob, you are extraordinary parents.
Judy & Family
YAY!!!! That is such a leap forward! Im so happy he gets to come off for a little bit. I miss you three terribly! Take care and Ill talk to you all later!
Oh no another day without an update on the Westfall gang. Hope all is well. Greyson, you are just the cutest little man! I am looking forward to meeting you soon. I was so glad to hear that you are having some free time without the ventilator, WHOO-HOO! Bob and Stacy, you must be ecstatic about that. You two are such incredible parents. God has blessed all three of you. You in turn have blessed all of us by allowing us the pleasure of learning about Greyson.Thank You so very much. A day without an update is not good, but we all understand that you have a very busy life. Have a wonderful evening! Bless you all.
It sounds like everyone had a wonderful day and Greyson had time to play with Grammie! Sorry that it was poking for blood day too, but sooo glad to hear about his progress with weaning off ventilator. You took such a wonderful picture. God Bless you three always and keep you in His care. God knows the perfect time for all things and He surely is moving mightily on your behalf.