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.
Dear Bob, Stacy, & Greyson,
Our love and prayers are with you during this diffuct time. Bob, your insight and faith in how God can and is using Greyson for bringing glory to His powerful name is remarkable.
We will probably will never really know this side of eternity how many people have been positively impacted by Greyson and your positive perspective.
The Apostle Paul also found God’s grace to be sufficient when his fleshly thorn was not removed. He too, earnestly prayed & hoped for a sudden change in his condition. We’ll keep on believing, praying and trusting with you and your immediate and extended family.
Be assurred of our continued love, concern and hopeful praying.
Gordon & Naomi
Hey guys,
You’ve talked to Rachel via email, but I’m Nathan, Derek’s cousin and Eva’s dad. I’m sorry that you guys are having to go through all this. We’ve followed your postings, but have never taken the time to post anything. It’s weird to read your blog because it’s like a time machine. We were going through a lot of the same things. Eva was in NICU for 200 days, but she’s been home for a year and hasn’t been readmitted once. I think a big reason Eva hasn’t gone back is because she had a trachyostomy. The air she breathes has been filtered. We’ve been praying for Greyson. We know how long a road it is for a little 24 weeker. But our daughter is living proof that prayer and a strong family can work miracles. Rachel was really distraught that Eva needed to be trached, but it was necessary at the time, it helped her come home quicker, and hasn’t been even a fraction as bad as we thought it would be. We’ll double our prayers that Greyson can learn to eat by mouth because in hindsight, we wished that Eva wouldn’t have gotten a g-tube and that we would have pushed them harder to teach her to eat by mouth. The doctors are talking about taking the steps to get Eva’s trach out. It probably won’t happen in the next couple of months, but the fact that they’re listening to us and seeing how good Eva is doing is reassuring. I know you have Rachel’s email, and I included mine with this posting if you have other questions. Eva’s co2 dropped through the floor when she got trached, and it never went back up. She gets blood tests every 6 weeks to check her co2 and electrolytes, and she’s done awesome. Even if you need home nursing to get the little guy home, do it. He will thrive and surprise the heck out of the doctors once he gets mom and dad 24/7. We’ll continue to keep you guys and your little miracle in our prayers.
Nathan, Rachel, and Eva
Bob, Stacy and Greyson –
I am in the middle of my stretch of days off, but still read your blog everyday. I am sorry to hear this is a difficult day for you. I know this seems like a step backward but hopefully it means Greyson will be home sooner. You guys are amazing and are in my thoughts and prayers.
with love, Corinne
p.s. Glad you are both feeling better!
Thank you Nathan for your words of encouragement. We have been praying for
Eva as well and it has been amazing to hear how she has done with only a 1/2 of a diaghram.
Greyson this is a bad day for you but I am praying it makes your gasses better and you stronger. I know you hate that vent and isn’t that the way life is, some of the things we hate the most make us stronger and better.
Sometimes Gods has a different road he wants us to travel. Todays trip seems to be on that road. We pray for the right directions the doctors will take and for the loving care all the nurses give Greyson. He has such a wonderful loving very large family. What a fantastic comment Nathan left today. Those are the encouraging words we all need to hear right now. We just know that Greyson is such a fighter and we pray he will take to all the new things happening in and around him. We pray that this will be just what it takes to get him home. Thank you Bob for all your insight. Your faith makes my faith stronger. Thank you Stacy for being the mother I just knew you would be. Greyson has been blessed with the most amazing parents. Dad and I are so proud of you and we pray constantly for Greyson to get well. Blessing to the three of you.
I can’t imagine what kind of day you all have had. You (Greyson, Bob and Stacy) have been in our prayers and thoughts all night and all day today. I so appreciate Nathan’s words of encouragement, especially from someone who has been there. Our prayers have been with Eva and her family too! Hopefully they will share more as well! 🙂 Remember that you are loved and prayed for! Hang in there! See you tomorrow night!
To Greyson’s Mom and Dad: Though you don’t know me, I feel honored to have been able to follow Greyson’s story. My friend, Ashlie Miller, is an NICU nurse who was blessed to care for Greyson. Through her, I have learned all about Greyson and the challenges he and you have had. I will keep you all in my prayers daily and perhaps one day will be privileged to meet you all.
Bob and Stacy,
Valerie and I continue to be impressed by your display of Faith and strength during these times. The time we spent with you and Greyson today hopefully made those four hours speed by, even though we were all watching the monitors closely. We were also very impressed with the care your son is receiving at the NICU. Watching Greyson struggle today was tough, but watching the two of you constantly thump his chest and speak encouraging words to him spoke volumes about the awesome parents with which little Greyson is blessed. We join with the others is thanking Nathan for his timely words of encouragement. Love you three! — John & Valerie
Bob and Stacy,
I can not even imagine how difficult today must have been for you. I have prayed and prayed for you and Greyson today. I spoke to Rachel for over an hour this morning and it was very uplifting to hear her tell me how well Eva has done. I know that God has a very special plan for Eva, Sebastain and Greyson and I feel honored to be a small part of it. Eva seems to be the happiest child I have ever seen despite all that she has been through and you can see in Greyson’s eyes how much Love he has to give. They are all without a doubt miracle babies and it is pretty exciting really to see what God will do in and through all of them. I can’t wait to see you tomorrow!!! We will continue to pray. Thank you Nathan and Rachel for all that you have shared with us!
Love,
Aunt Tam
Dearest Loved Ones, It’s so wonderful to read the comments on your blog. What a treasure and encouragement to you in these trying days. Little Greyson is such a fighter and how blessed he is to have the two of you as his parents. Please know you are in our thoughts and prayers all the time. Tell Greyson he has so many people that love him!!! What an encouragement to read Nathans comments today. Take care of each other and know how many people love and pray for your safe keeping. God Bless You and all of the wonderful people that help on a daily basis in the care of your baby.
Love
Aunt Fran and Uncle Dick