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We had a big consultation this morning with all the doctors and nurses. Here's the bottom line: Paton's going home by the weekend! We are nervous, but we are thrilled. The neurosurgeon is convinced that the swelling on his back is not a build-up of cerebro-spinal fluid, but just swelling from the surgery. He feels it has gotten a little better, and will completely go away over the next few weeks or months. We'll have to keep a watch, but at this point it looks as if there is no hydrocephalus, and therefore no need for a shunt! This is just amazing, as 80-90% of spina bifida kids have to have one. Of course, it could happen later. But for now, we're good. He cannot have any pressure on his back until it heals, so it will take some adjustments with sleeping, feeding, holding, trasporting, etc. He will have a specialized car seat (bed), and specialized positioners. He will also go home with an orthopedic boot on his leg to help correct the clubbing. We just finished infant CPR -- kind of scary.
Thank you all for praying. Many of you have prayed for God to give wisdom to the doctors. That prayer, in particular, I think He's answered mightily. Most of the doctors were pretty sure he needed to be shunted, but the neurosurgeon kept insisting that we wait. I believe that was clearly the Lord's doing. Please continue to pray for us as we make the transition and try to keep in mind all the many, many things we are learning in the process. God is good.
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Oh my!! What wonderful news!! I'm sure you guys are excited and nervous all at the same time! What a wonderful answer to so many prayers said for you guys and little Paton ~ home in a week and a half ~ thank you, Lord! Eric and I (and mom) experienced the same fear while taking those infant CPR classes when we were about to leave the NICU to come home with Bailey, so we can understand just a bit of what you're feeling. :) We will be praying for peace and guidance in the midst of so much information and continued healing for little Paton. We love you!
ReplyDeleteWow - "Yeah and Yikes!" is a fitting description! It sounds like good progress though, and I'm very happy to hear it. :) May the Lord continue to answer prayer and to bless, as I'm sure He will. [BTW, I didn't figure out how to post more of my name, so just letting you know that this is Ann Marie C. :)]
ReplyDeletePraise the Lord! What an answer to prayer! Now if Frank and I can just kill off all our RSV viruses, maybe in a week or two we can meet the little guy. -- Diana
ReplyDeleteHow exciting!!! How scarey!!!! God is in control and He will give you both wisdom to handle every situation. Remember Da is available to do whatever you need!!!!!
ReplyDeleteThat's wonderful news! This is a definite answer to prayer. I'm praying for you guys and am so glad little Paton John gets to come home early!
ReplyDeleteExciting to see how the Lord is answering so many prayers so clearly! I'll bet you can't wait to all be home together as a family. You seem to be very blessed with an excellent group of doctors. The Lord is certainly watching out for little Paton!
ReplyDeleteWoo-hoo! I am so glad for you all! No hydrocephalus! That really is great. We won't stop praying though. You still have big challenges ahead. Love ya!
ReplyDeleteThanks, everyone. Ann Marie, we figured it was you -- thanks. Elizabeth??? Comer? Morrison? Or???
ReplyDeleteWe are all looking forward to being together. It will be so much more cozy at home!
YES!!!! I am SO excited here I am nearly bouncing off the walls! What great news and what a Mighty God we serve! What a great answer to prayer! John and Jen I'm sure you're all nervous about taking him home and what that will be like but I'm also sure you will do a marvelous job. I was telling someone today that it's hard to believe I have gotten "attached" to a kid I have never even seen but that's just how I have become over this last week. One of the first things I have done every morning is log onto the net and check on Paton's progress. Thanks John for the frequent updates. You mentioned Paton's back, I had to sleep on my stomach when I was born due to my spina bifida and I still sleep that way to this day. If there is anything I can do for you or any questions you have regarding spina bifida please don't hesitate to call or email me. God bless you all as you start on this new adventure with little Paton.
ReplyDeleteThanks, Scott. I would really love to meet you next time we come to Eden. And have you meet Paton! That would be so great. Not sure when we'll get out there next -- right now it's hard to imagine making the 21-hour trip with 4 little ones! But hopefully one of these days. You've been such a blessing. I'm sure we'll email you from time to time just to get your take on something. I'd love to just talk sometime and hear your story. Especially the story of God's grace in your life. Take care, brother.
ReplyDeletei have a son with SB. Toby who is three (i messaged you on facebook) I cant still VIVIDLY remember the moment that told us we were going to go home. I was scared to death, but still excited. what an incredible mixture of emotions. it really does get easier once you are home.
ReplyDeleteElizabeth = Elizabeth Comer Ingalls :)
ReplyDeleteO, Hi Elizabeth! Thanks for your prayers!
ReplyDeletePraise God!! What great news!!! We will continue to life up Sweet Baby Paton in prayer! God will give you the strength and peace that you need!!!
ReplyDeleteWow! It's been a couple days since I've been able to check in with you! How fun to get on tonight and see such sweet family pictures and news of bringing Paton home! You two will do beautifully! And no shunt and no hydrocephalus!! What a mighty God we serve! Much love and big hugs as you start your next adventure!
ReplyDeleteThanks for all your encouraging notes, Rachel. God is good.
ReplyDelete