Saturday, April 11, 2009

we got here to the hospital about an hour ago. Shepherd is still working REALLY hard to breath, even on the oxygen. They are just going to take it hour to hour and try to get him through the next few days, hoping he'll gain strength. It's so hard to watch him struggle and know how miserable he is. The docs are totally committed to trying to keep him off of the breathing tube, but nor very optimistic. To be very honest, I know that without God's help, Shepherd will not stay off the vent. Truly, we are standing in complete need of God's provision- a miracle. And I am humbly aware that there is the possibility that His help will not show up they way I'd like it to. But oh, I pray it does. I pray,pray, and pray and hope. 
If he tires out and has to be re-intubated, the next thing they will talk about is a tracheostomy. Of course, at this point, my heart is filled with fear and disappointment at this prospect. I am really struggling to accept this as a possibility. I just don't understand how heart surgery can seem so simple and getting a full term baby off a breathing tube can seem so impossible. I know that to these doctors, and even maybe to some of you, a trach seems like a rather simple solution to our problems. But I have met all these parents in the PICU who's kids end up with trachs and it appears to be very complicated and unpleasant (infection, bleeding out, another surgery, all kinds of stuff). I am so grateful for the staffs ability to help Shepherd, but sometimes it seems the more they do , the more they need to do and it just has this downhill domino affect.
Ultimately, I have got to place my hope in God, and I have to believe that if His help shows up in a different way than I would like, that my hope is not disappointed. It's very up and down. Please pray for us to cast all our hope on God and trust the road he has for our little boy to walk down, no matter how painful.

8 comments:

Mom2Valerie said...

praying without ceasing for your sweet baby boy and for all of you

Anonymous said...

Praying in Houston for your precious boy and for both of you!
Psalm 121

Millie said...

I'll be praying. Forgive me if I haven't introduced myself. I thought I already did, but I can't remember! LOL My son Colin has HLHS and has completed all the Norwood stages. He was a tricky extubation too, with a very "floppy" airway, they finally used an oxygen face tent, where it directs all the O2 up to his nose and mouth, it staps just below the chin and is a big shield like thing that forces the air up to the face. Anyway, maybe they have something like that there too. It's the only thing that helped Colin from being re-intubated. They also used the nasal canula for high pressure O2, kind of like a c-pap but with the canulas and turned up the flow to keep his floppy airway open more. I don't mean to ramble on, just wanted to give a few pointers, hope it helps in some small way. I'll be praying.
Millie and Colin-HLHS

Jill said...

i am not sure how i came across your blog, but i have fallen in love with your sweet shep.
praying for you in san antonio~

Leah & Ben Wall said...

Psalm 62
5 For God alone, O my soul, wait in silence, for my hope is from him.
6 He only is my rock and my salvation, my fortress; I shall not be shaken.
7 On God rests my salvation and my glory; my mighty rock, my refuge is God.
8 Trust in him at all times, O people; pour out your heart before him; God is a refuge for us.
Selah
11 Once God has spoken; twice have I heard this: that power belongs to God,
12 and that to you, O Lord,belongs steadfast love.

love you all.
we're praying for you.

Jennifer said...

I am praying for your son and his doctors, and I am also praying for your strength and peace through all of this.

Kathy said...

Praying as well for that sweet boy...

Anonymous said...

My daughter had troubles coming off the vent, but when they went to CPAP she did well and it was only a matter of days and they were able to step down to the o2 nasal canula. I'm not a Dr, but is CPAP not an option?