Jesus Come quickly

We went to Chick fil a yesterday for dinner. It was so sweet and relieving to just play with the boys. They are such great people to be around.

I think this is my favorite pic so far. Isn't he beautiful?!? You can tell how much fluid is gone from his face.

It has been such an eventful couple of days for Shepherd, and I have not been able to get to the computer, somehow. I won't try to catch you up on all the details- it changes hourly anyway. The short of it is that Shepherd's case has proven to be quite a head-scratcher for the team caring for him. I am quite sure no one expected their little heart baby to be where he is now, as far as all his setbacks. And they aren't even quite sure why he has struggled so. I think their best guess is that a multitude of seemingly small things have continued to slow his recovery down. They are things that a healthy, strong, adult would have no problem with.  And our little 5 1/2 lb newborn who hasn't been able to get consistent nutrition finds the small things ginormous. I think the easiest way to describe his physical situation would be in list form, like the physicians do during rounds. 

• Respiratory- Yesterday was a really tough day for Sheph, breathing wise. He struggled for about the first 10 hours of the day with his breathing (90-100 RR, high heart rate, retracting, etc). We sure hate to see him struggle like that, it was a tough day. One of the hardest parts is they aren't sure why he is struggling. **Let me interject here a few facts that are helpful to know. There are 2 doctors currently working in the PICU @ UNC that don't usually work there. One is the night attending. We'll call her Dr.X. She is a doc @ Duke but did 2 residencies at UNC- Pulmonary and Cardiac (yes, that's heart and lungs, just what my little guy is struggling with). She happens to be picking up some night shifts right around now.  The other is the day attending (the attendings are the top guys of the teams, who make the ultimate decisions). Dr. D is a doc from Minnesota (God brought her a long way to be involved in Shepherd care). She thought it would be a good idea to take her vacation this week, and come see what she thought of the PICU @ UNC. (Clearly, divine) She was a cardiologist for 14 years!! Then worked for a couple years at Toronto sick childrens hospital- one of the best in the world- and has tons of experience in intensive care. In her words, "Kids like Shepherd are my favorite cases. They are the most complex, but they're my favorite." She has literally been specifically trained to take care of kids like Shep. She called him a  tough cookie to crack (she did, of course realize soon after, that he is a nut, not a cookie, but regardless- he is tough to crack).***** I believe that every person that takes care of Shepherd has been placed there sovereignly in God's perfect timing. PLEASE pray for the team of physicians as they navigate Shepherd's care. After I told Dr. D that we were glad God brought her here to take care of our Shepherd and that Shepherd is no mystery to God, who made him. She asked for me to pray that God would place wise things in her head. SO, please pray with me. Pray that the God who created Shepherd would enlighten these feeble yet intelligent human beings so that they can help Shepherd and God will be honored.
• Now back to Respiratory. Dr. X took care of him last night and she tried a new little something (being that she specializes in lungs) where they temporarily paralyzed Sheps lungs and figured out how he was breathing. She used this info to reset the vent so that he no longer works against the vent settings but they work with him. Praise God!
• Dr. D decided yesterday morning that one of Shepherd problems was that he has too much fluid in his body (blood transfusion, all kinds of stuff) that they have given him, without being aggressive enough about taking more back out. So yesterday they started a very aggressive drip of Lasiks (a diuretic).  They also were purposeful about replacing his proteins that he is losing out of his leaky chylothorax. They weighed him today- he has been weighing 6lb 8 oz (don't think so). This morning he was down to 5lb 8oz.. So, the lasiks is working and he is getting rid of lot's of fluid. Hopefully this will help a number of his situations (heart, lungs,etc). He drained a TON out of hist chest tube yesterday, hopefully sparked by the Lasiks. SO far he has drained out more than a Liter. 
• Chylothorax-If his drainage out of the tube doesn't slow by FRIDAY, they are planning to take him back to the OR for a procedure to help the chylothorax heal. Technically speaking (even though Shep has been anything but technical) the monogen formula should heal the chylo, without surgery. Please pray.
• Cardiac- His heart situation has come back into conversation. The cardiologists here feel confident that his VSD and new narrowing in the aorta are not causing Shepherd problems. But they have agreed to do another ECKO and revisit his heart situation because of how complexing he is. On his x-rays, his heart is enlarged, he doe a VSD, and there is some narrowing around his surgical sight. The question is are these things looking innocent but aren't really. Please pray that his heart will not be part of his problem, because that is the one thing that would necessitate heart surgery again, and they aren't sure how well he'll take that.
• Please also pray against infection. He has has and still does have so many foreign things his body is in contact with. Right now, they are crossing their fingers that he doesn't get an infection. We can do better than that. Let's ask God to protect his body against infection.
• Nutrition- They had re started his monogen formula feeds at full feeds yesterday, but he started to throw up. I am hoping he was throwing up because of his RR (he was working hard and gulping in lots of air), and because they took him off of his morphine too fast. That is likely, but to make sure, he is having some GI tract testing to make sure he doesn't have reflux before they start back feeds. If he doesn't have reflux, they will start back feeds, while watching his chest tube output.  If he does, they will have to consider putting in a feeding tube, surgically. Please pray that he can consistently get nutrition in a non-invasive way.
• Narcotics- Another thing Dr. D did yesterday was to take change his morphine from every 4 to every 6 hours. She wanted to make sure he wasn't so sedated that he didn't do the breathing on his own. When he struggled so badly, they began to wonder if some of his Resp. trouble was because of withdrawals. So they have taken him back to every four and will keep him there a little while. Please pray that he will transition without withdrawals too badly.

That covers it, as of this hour. Oh, yeah, and first trach change today. I was there this morning and he was doing wonderfully. His RR was even in the 20's at some points. I have literally never seen that form him. Add he was awake!!!(pics above) And comfortable. And just all around beautiful. They aren't sure which of the things they tweaked is ultimately helping him, but he is helped, for now. He has a long, uphill battle. Thank you for praying with us. God has done so much already. Please pray for healing with us. 

As I sat here writing I thought, perhaps God has caused Shepherd's case to be so complex so that we will testify of us His power and ability.I don't know, of course. But I do know that I hope that only God will get Glory for Shepherd's healing. And I do desperately pray that all who have come into contact with Shepherd will be left without a doubt to who the Great Physician is. 

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Please be praying for Noah. He had to leave to go back to WF today. He will be gone until tomorrow night. He is doing the funeral for a precious girl, who used to be in the youth group when Noah was pastoring. Please pray with us for Gabbie's family. She was killed this past weekend unexpectedly and violently. Pray for all that do not know the redemption that Jesus offers from this unbearably wicked world. Pray that God will give him the ability to offer up hope to the hopeless. 

So as my little boy lay sick and weak in a hospital and someone elses daughter is gone and a hearts are broken. I think of the words from a Mercy Me song.

(Verse)
Jesus come quickly
Jesus sing over us
Jesus look down on us
And smile at what you see
Jesus come quickly
Jesus please hold us tight
Jesus with all your might
For your love will set us free
(Chorus)
Come quickly Lord, oh please show your face
Revive us now from our lifeless state
We need your help oh this world can't wait
Show us your grace and your mercy
Jesus come quickly