His nearness is our good

The boys were with us on Easter and the folks at the RMH gave them a basket full of gifts

On Easter 2009

Psalm 61:1-3

"Hear my cry, O God, listen to my prayer; from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy."

- The day Shep had his trach put in, we were leaving the PICU waiting room (it was late at night and we were soooooooooo exhausted) when I looked over and saw this passage on a calendar.  I was really struggling with hopelessness and discouragement  and I don't know where that calendar came from, but I am grateful for God's word being thrown in my face when I'm too tired to look for it.

The procedure went great. They called us about midnight to let us know it went well. (It got pushed back b/c of another emergency. welcome to the PICU). They got much more fluid than they anticipated and it looked clear so they don't foresee infection. When we came in this morning, he was looking good, probably will get another blood transfusion, but was awake and comfortable and breathing REALLY well, with some help from the vent. They have started him on low level feeds, and are weaning the vent slowly. His goal over the next couple of days will include eating and weaning off the vent, while fluid still drains through a small tube they inserted into his chest wall last night. It has already drained a lot of fluid , but know it has begun to look as though some of the fluid draining is  from something else. They anticipate that it is from something called "kylo" (sp?). If the surgeon nicked the lymph system during surgery, then it will leak when he is fed. Hopefully it can simply be fixed with changing his diet to a special formula for six weeks while it heals. If not, he will possibly be looking at another procedure. 

Thank you guys for praying for him and for us. We have had some ups and downs but God has brought us some great encouragement in a number of ways.

Some of you have been praying for Reed. To give you a little more info, he was born with some difficulties, but nothing that fit into any typical disorders. He has been home with his parents during the first 6 months of his life, but recently he aspirated and was sent here for some surgical procedures. During one of his procedures last week, they found that he has a rare muscular disorder and so far is presenting as a worst case scenario. The staff has told his family that they should not expect him to live past a year, and he is six months old now. They also have a seven year old that they are trying to parent through this. Please continue to pray for them. We got a chance to speak with them this morning and they are trying really hard to be hopeful. But they are obviously hurting immensely. Pray that God's love and nearness will be greater than their sorrow. And please join me in praying for healing for their precious, precious child.

As I struggle to be hopeful, it was great to hear them say how helpful it has been to have us here. It brings me encouragement to know in the present, some of the ways that God is using this trial and Shepherds life. I know there are many things God is doing that I may never see, but how kind it is of God to show us fruit from our sons life as we walk each day through difficulty.

I could make a very long list of the ways God has shown his nearness (and I think I may begin to do that at the end of each day, as a way to protect my heart from despair). Just taking yesterday, there were a number of things that God did. I was REALLY struggling yesterday morning. The first thing we encountered upon arrival at the hospital was a nurse who had a gift for us. She has only been Shep's nurse one time through our whole stay. A friend of hers made a beautiful quilt and told her to give it to someone in the unit she thought should have it. By God's prompting of course (though she may not know it), she thought of Shepherd.  It was very precious. 

It wasn't too soon after that the room flooded, right in the middle of Shepherds very scary breathing episode. God was gracious enough to have us at lunch during the flood ordeal (with someone from our church to encourage us). No extra drama, please. Thank you.

Driving back up to the hospital after lunch we were behind a van whose window decal (that took up the entire back window) said "The Lord is my Shepherd." That's a first. How timely. 

And then there are the many times in a day that the body of Christ (including both of Noah and I's family) encourage us in a NUMBER of ways. I think I will do a separate post just about that, cause there is WAYY tooooo much to say about the love of our family (church and immediate). 

But I say all this to remind myself and others of some of the small ways we are not left alone as we struggle.  And of course there are all of the HUGE ways that God has shown His nearness, not to mention the fact that my son is in the room with me- ALIVE! And has been through open heart surgery and other surgeries. AND,AND,AND..........that's a separate post. But thank you all for praying for us, the fruit is beautiful.

Psalm 61:1-3

"Hear my cry, O God, listen to my prayer; from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy."