Friday, April 3, 2009

One more day


What a roller coaster of a day. We slept in, so that we could catch up on some rest. 
But by lunch time I was a puddle of tears and just kind of a mess all around. My wise husband advised we go back to the RMH and rest. We both slept for 3 hours and woke up feeling a little better. We have just spent the evening with Shepherd and as we end our day we are feeling very encouraged.
They are planning to extabate (take out the breathing tube)  any time between tomorrow and monday. Please pray for God's timing in this. It's kind of a guessing game for them because they have no way of knowing if he's really ready to breath on his own except to let him try- and possibly fail. When they extabate him, they will have pulmonary specialist (lung folks) there and while they pull out the tube, they will at the same time send  a scope down his throat to see if the vocal cord is damaged or if it's something else. 
They started feeding him very small amounts of breast milk through a tube in his nose. I mean VERY little, like 1cc an hour. It is mostly to stimulate his gut and make sure that he can very slowly handle digesting food. This is major for heart patients because of their defect. They have not had adequate blood supply to the intestines and sometimes their body doesn't handle the adjustment well. So far, he has done well with 1cc an hour, so were excited. They also upped a drug that is a diarrhetic to hopefully drain his body of all the fluid it is retaining from surgery. I am looking forward to seeing his little face without all the puffiness. And it just seems so unpleasant for him. All of his labs are showing up looking great. They also did an ultrasound today to check to make sure his diaphragm wasn't another reason for his lack of success off the ventilator. Everything looked great with his diaphragm. Another praise. And, lastly, while we were in there tonight, with his great night nurse (another praise), we noticed a lot of yellow fluid leaking out of his bandage over his incision. I was concerned it might mean infection. But when the doctors came in and listened to his chest, they were ecstatic. I guess the kind of fluid that's in his body is yellow, it's not a sign of infection, but his lungs had been sounding real crackly  and now they sounded clear as a bell. So all that junk must have been inside, and now it's outside! 
So overall, it's been an encouraging day. He's doing good. Please continue to pray about the timing of the extabation. Also, pray for us after his extabation. As we experienced yesterday, once he's off the ventilator, they try to get him off the pain meds, and this means he's very uncomfortable. It was so hard to see him in pain and not be able to help him, so please pray for our strength. Also, continue to pray for our weariness- in every way. Pray for protection against discouragement. Pray that we will hope in God and not information. That will make the roller coaster a little less wild, I believe. 
Hopefully our boys are coming up to stay the night with us at the RMH tomorrow night and we can't wait. Please continue to pray for them. They are in great hands, and we haven't worried for a second, but we really miss them. We really miss simply being a family, and we can't wait to bring Shepherd home and all be together. We are already planning on a very big family vacation. Today, my sister asked Aslan what he wanted to be when he grows up and he said "a doctor." She said "really?! what kind of doctor?" and he replied "One that helps babies." awww. That's my boy.
Thank you all so much for praying for Shepherd. We have loved hearing of people all over the world praying for him. It really blows our minds. I have no idea how these folks found us, but we were so blessed to find Shepherd story on this website. Enjoy praying!

10 comments:

Jennifer said...

I don't know you, but I found your blog through Bring the Rain ... I am praying for your son and for you and your husband. I can't imagine how difficult this must be for you.

The Q family said...

I found you through Bring the Rain and have been following since. I have been and will continue praying for little Shepherd and your family.
Angel

Erica said...

Darling I just got caught up on your blog after Miranda sent out an email. Please know we are praying for you and loving on you from a distance!!!!!! Love, the Coopers

Carrie said...

I am a friend of Miranda. So glad that Shepherd did better yesterday.
I will continue to pray for him and your family. Praying that God would continue to sustain your minds, hearts and bodies.
Carrie

carrie said...

I love you guys! I am praying diligently for you daily. Smooches!!!
Carrie

Melissa said...

we are praying His grace be so near to y'all!

Kristie said...

Stephanie,
Just wanted to let you know that we are praying for you. I am a nurse and, though I work with adult patients, I know what a roller coaster trying to extubate someone can be for the patient and the family. I also know that pain control is so different for each individual and that it can be torture for the families to watch as we figure out how to give enough pain meds, but not too much (especially when we're trying to extubate). I think it is easy to hang all of your hope on the next intervention, the next visit from the doctor, the next lab result (because it seems like something tangible that maybe gives a sense of control)... and then when something happens (there is a delay, you miss seeing the doctor when they come by, the lab result is inconclusive), all that hope that was just about the only thing getting you through the next hour is either frustrated or disappointed. You are wise and brave to put your hope in the Lord. He is the great surgeon, physician, and healer. He will sustain you and Shepherd. Try to take it easy on your mind and body... rest and breathe... eat if you can. I cannot imagine how you are doing this except through the power of Christ. I will pray for rest and clarity of mind for you and Noah and I will pray for Shepherd's vocal cords, his lungs, his belly, and for the team taking care of him.

Anonymous said...

Stephanie, we are praying for your baby. My twin sister went through similiar situation. Wh have witnessed God's power. We know that God is with you and with little Shepherd. God has great plans for your boy. May God be glorified though his life. Jer.33:3
Zhanara and Handy family

Prayer Blog said...

Stephanie,
We are praying for Shepherd day in and day out! We will continue to pray for him. You asked about the code for his button, I will post the HTML on my blog for you to copy and place on yours and let others get it. Blogger doesn't allow you to send it over comment :( If that doesn't work email me at whengodspeoplepray@yahoo.com and I will resend it.

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Sorry for offtopic