Open my hands

The sun was beautiful this morning.  I like the city and the feel of the city as I walk to the hospital.  I'm sorry for writing a novel below.  Short update for busy people:  Josiah had a good day.  

Josiah is having a good day.  He didn't need chest vibes or suctioning today as his chest sounded good.  We thank God for that!  We carried him to a mat in the playroom where his PT assessed his mobility.  Josiah was quite calm and lasted longer than the PT expected.  It was interesting to watch how Josiah's sats dropped to 60 when the PT turned him on his right side.  They also dropped to a lesser extent when he went on his left side.  It was yesterday morning that I noticed him bringing his hands together and pulling things to his face and he was doing it a lot more today.  This is wonderful progress! 

Oral feeding attempts won't start again until Monday as there is still a worry of whether or not he aspirated some of his feed yesterday which could cause pneumonia if the milk had any bacteria in it.  It wouldn't show up for a couple of days and new things are not started before the weekend.  However, I have instructions to give Josiah lots of positive oral stimulation, including giving him some of my milk on the pink sponges he likes.      

The nurse couldn't take blood again this afternoon from the picc line so they decided to TPA it again.  This happened around 4:00 PM so they didn't want to make a final decision about the picc but if they didn't TPA it then it wouldn't be open tomorrow.  If the picc isn't working then it should be removed but whether or not they'll want to or be able to do that on a Friday is a question.  Once the picc is removed they will be watching for any signs of the clot in the heart moving to where it shouldn't move (the picc is in the clot in the heart so it is possible that the picc will actually be difficult to move).  Please pray for wisdom regarding this picc line and for a safe and straightforward removal at the perfect time.

I heard today that the pressures in Josiah's lungs are not currently acceptable for the second surgery.  I don't know if they've come down since his last cardiac catheterization.  Josiah's cardiologist asked to speak with me tomorrow morning.  The large team will discuss Josiah's case on Monday afternoon.  I know one big question is what to do with the clot in his heart and right SVC (and whether or not to do anything).  Please pray for wisdom.  (I'm so thankful that James 1:5 is in the Bible!)

They are organizing a meeting with all the different teams involved in Josiah's care (cardiologist, neurology, thrombosis, etc.) so that they can all be in the room at the same time (along with me) to discuss where we are headed. 

We had a nurse from the CCCU today whom we have had before.  She was happy and surprised to see Josiah doing so well.  One of the staff physicians from the CCCU also came to see Josiah.  I gave Josiah some of his medications and feeds today, we had a cuddle in the rocking chair, we had a stroller ride, and he sat in his tumble chair. I've had him wearing sleepers for three days.  He looked cute in his lion sleeper today. 

It seems like there are a lot of Christians here.  In our hospital room of four families, three are Christians (I'm not sure about the fourth family).  I've also met lots of Christians at RMH. 

There is a boy in our room who needs a touch from God.  He just looks like a boy sitting on a bed but his heart is failing.  His caregivers also need the peace of Jesus.

It probably sounds crazy but it's still hard for me to realize/accept/know/understand that Josiah is sick and has a sick heart.  He looked normal to me and was balanced for three and a half months.  He's been in the hospital since the end of July, he's had three surgeries with lovely scars to prove it and I still want to think, "Just let me feed him and he'll be fine." :) 

Okay - I wanted to post another link to a video but I've had a hard time deciding which one so I think this is going to be Sara Groves week with more to follow.  I actually just discovered this song tonight and I love it.  We've owned the song for over a year now.  It's called "Open My Hands" and it's based on the Bible verse Psalm 84:11 ("No good thing will He uphold from those who walk uprightly.")  I want to "open my hands and heart and nod an emphatic yes to all that God has for me."  I don't know where this journey will take me but I know that I want to walk it closer to Jesus.

One line in this song says, "Pain is no measure of His faithfulness."  Abraham was ready to give up his only son but he did not doubt God's faithfulness.  Well, I just read Genesis 23.  He may have doubted but if he did doubt, he still walked in faith, spoke in faith, and obeyed God.  Can I go through tragedy and still believe and sing that He withholds no good thing from me?  Isaiah 55:8 says that God's thoughts and ways are different than our own.  Many mothers have watched their sons and daughters die, knowing that God could save them.  I want to trust God and His goodness, come what may.


Thank you for your prayers!  You are making a difference in our lives.  

Blessings,

Elizabeth