Sunday, April 19, 2009

Alrighty. How was Shepherd's day today? Good and kinda crazy, too. It was pretty uneventful the first half. He had a great nurse and was breathing really well. They were watching his test tube because of it's insane output at this point. And he had been started on the special formula to see if that would help. Around 3p, he started to get really upset and cry ( I mean without the noise) and squirm, his heart rate was getting really high, his respiratory rate was high and he was struggling to breath. We couldn't quite figure out what was going on cause he'd been doing so well. He had also come down on the amount that was coming out of his chest tube (30cc for the day so far), which we assumed was the formula doing its job. They did realize he had a dirty diaper, which had given him a pretty good diaper rash. After we changed that, we hoped he would just calm down.  He just got worse and worse so as they explored his chest tube a bit more and suctioned it much more. And lo and behold, out came 75cc of fluid!!!! Our poor baby. No wonder he was miserable and couldn't breathe!! Almost immediately, he calmed down and his numbers all began to look better. 
I was so grateful to have a clear reason for his breathing struggle. We really feel confident that he is showing real substantial signs of strength as far as respiratory  goes. He needs prayer for tomorrow. It will be his first trach change, where they will make sure the site of the trach is healing up good and the trach is traded out for a new one. They think this will help his breathing, too. They will probably try to see how he does off the vent tomorrow. The good thing about a trach is that they can safely take him on and off the vent. So if they take him off and he tolerates it for a number of hours and then gets worn out, they simply pop the vent back on and let him rest- no harm done.  
As far as his chest tube, were not completely sure what the plan of action is. They have stopped his feeds to let his body rest from the drainage for at least a couple days, when they will probably start the formula again to try it out. Please pray for this. It is very tricky because he NEEDS to have nutrition to grow and get strong and move forward. But if feeding him is causing him trouble with drainage.... you can see the predicament. 
So as far as prayers for the next couple days
-Trach change tomorrow
-Weaning off the vent
-chest tube/chylothorax
-All the folks we meet everyday. It is amazing to have an encounter every day that makes you see just one small part of  how God is at work in all of this. Truly divine.
-Our other boys. They are with us right now at the RMH. They are the best encouragement for us. Pray for them through this crazy time. 

Thank you guys so much. 
Don't have any new cute pictures, but I will soon, cause I went out and bought Shepherd some kimono style shirts/onesies. They are perfect for all of his tubes and lines. I am so excited to get to put some of his own clothes on him. He's so handsome.

Oh, and a P.S.- We are moved. Isn't that miraculous?  It's the craziest thing, because I left my house three weeks ago for a Dr. appointment and planned to go on a date that evening. And we haven't really been back during all of this, and now we won't be going back. It's just so weird to have left my house one day and not have anticipated all of this.  wheww. I sure am glad God really  started working on me about expectations/ moving/trusting him/being flexible/His will/My plans/etc. about a year ago now. And I thought that was all that was about. Isn't God so kind to have been gently preparing us for this. Trust me when I say that is another post all its own. 
I kid you not, on my shower wall (where I write verses I am memorizing) for months has been Proverbs 19:21 "Many are the plans in the mind of a man, but the purpose of the Lord will stand." Didn't know how much I would need to know that, did I?


KR said...


Anonymous said...

God is so good...praying for continued growth and strength and healing.
Love you guys,

Terra Jones said...

Continuing to pray for your beautiful family!

I just drove by your old apartment...and it was all emptied out!

Millie said...

Praying for the drainage and for him to be successfully weaned off the vent. Love the pics from Sat. Sheperd is such a handsome little man!
Millie and Colin-HLHS

Anonymous said...

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope.

Romans 15:13

godsgal said...

I know you don't know me, but I'm praying for you and your family. I'm Shaana Hollingsworth's sister (she's the new employee at your church - you probably have met her by now). May God Bless you and your family tremendously during this difficult time.

KR said...

Praying, hoping all is well.