Greyson got to check out one of his other toys today. He wasn’t sure about it (a common theme with new things) but was warming up to it after awhile. If the trend continues he will LOVE it soon.
Today Greyson had an upper GI study. Basically they put barrium (or something like that) down his feeding tube and then took pictures every so often as it worked its way through. This is in preparation for all the surgeries he has coming.
So what does he have coming? Well tomorrow morning they will decide for sure but most likely he will be getting a PDA ligation (the PDA is not a palm pilot, but an artery in the heart that should close at birth. With preemie’s it often doesn’t). We haven’t talked about this in a long time, but it is still open and they are going to talk about whether or not it would benefit him to get it closed surgically. He also is going to get a surgery for his reflux, a tracheostomy, a G-tube (for feeding), and to top it all off he is going to be circumcised. Sounds kind of like a lot doesn’t it? Well it is and in fact he will not get this all in one surgery, but quite possibly in two. They will talk with us about that tomorrow after they decide whether or not to go ahead and fix the PDA. The other heart issue I talked about yesterday they will leave alone for now and watch. Many times this will go away on its own, or not be a problem. They will watch it and if it becomes an issue they will fix it then. This is somewhat good news as that surgery is much more involved than fixing the PDA. So Greyson has a lot on his plate right now. I know it probably sounds bad, but it will be OK. The challenge now is waiting to talk to the Dr’s tomorrow so we can know what the plan is going to be and which surgeries will be done in what order. We talked to the surgeon today (actually Stacy talked to a lot of Dr’s today as she went this morning) and it was really good to discuss all the pro’s and con’s of all the different surgeries.
Greyson’s gasses continue to be better (well the c02 was up from yesterday but overall everything is coming down into the correct range) so we are thankful for that. He is showing improvement and once all these surgeries are over and he recovers we should be in pretty good shape. As with any surgery there are risks but we know Greyson is in God’s hands and that He can guide the Dr’s. So until tomorrow……….we wait. Have I mentioned I’m not real good at that!?
We will be praying for Greyson as always but also for his surgery. I probably will not call you in the morning as it sounds l like you will be pretty busy. But please let us know how this whole thing turns out. (In other words you can call me when you can) What surgery he ends up having and which he will be waiting for. I know that waiting is not your thing Bob but you really have gotten a lot better at it. 🙂 Try to sleep!
Love,
Tam
i oriented at children’s today to the trach/vent cluster and all i could think about was greyson. the two little kiddos i had with trachs were so, so cute and are doing excellent, playing just as any little kid would! i can’t wait to follow greyson’s progress through these next steps. he is such a tough little guy and i think about him each and every day! 🙂 hang in there everybody!
love,
erin
WOW! Greyson doesn’t do things in a small way does he? God is planning great things for him. We will be anxiously waiting to see what is decided tomorrow. God will be with all of you and you need to lean on him. I hope Greyson’s new toy didn’t scare him! He looks a little apprehensive. What a sweet picture, tho. It is hard to be patient waiting for the decisions, not only for you but for us, being so far away. Great news on how the co2 level and the other things are coming in range. Dad and I love you three so much, and we are sending our hugs, prayers and a prayer for a restful night. Love Mom and Dad
Greyson, Stacy and Bob,
Know that we are all praying for you – that Greyson’s surgeries are successful and that he heals well and is comfortable along the way. We pray for you, Bob and Stacy, that you will continue to be strong – just keep being the absolutely great parents you are.
Good night little one, rest well and be well and then Mom and Dad will be, too.
Judy
Hi Guys,
Nathan and I are praying for your little man. I just wanted to say that I hope you both don’t worry to much… we know exactly what your going through. I know you know that but if you guys have any questions please don’t hesitate to ask us. Eva had her PDA early on just a couple weeks old. It was nothing she sailed right through it, don’t get me wrong it was a little scary. She also as you already know has a trach and g tube and did just fine.
? So when you say surgery for his reflux, do you mean a fundo or fundal (spelling ?) plycation? I know the Dr’s know what they are doing but really have them look and make sure he needs one because they were thinking of doing one on Eva but they found out that she really didn’t need it and she would do just fine without.
I know its scary and a lot to handle but if you guys need a sholder to lean on we are here for you totally!!! He is going to be a champ and when he’s all healed you guys will be going home before you know it, he will do soooooooo much better I know :0 ).
So get some rest and let me know if you have ?? or need to talk :0 )
Hugs and Prayers,
Rachel
Wow! What a big day for Greyson! He has had so many in the short 5 months he has been alive! As Jonathan put it, “He is one busy little dude!” We will pray today for the doctors and for all that is to come. Even when we can’t be there, please know that we are there in spirit and love you three more than you will ever know! Be patient Bob! We know you can do it! Keep us posted as much as you can! Give Greyson a love for us!