Saturday, August 21, 2010

I'm a traveling man...

...made a lot of stops
all over the world
-Ricky Nelson, Traveling Man

Today is a bit of a hard day for all of us. When we had originally planned our trip, we had been told to expect to be here about 2 weeks. Today is the end of that 2 weeks, and so we're checking out of the awesome hotel that has been our home and traveling to the Ronald McDonald House. We have made friends with Toni, who works at the front desk and considers the place to be her house. We truly felt like guests in her home (albeit a BIG 12 story mansion of a home!). We knew there could be complications that could keep us here longer than 2 weeks, but we always assumed those were things that happened to other people.

So, my folks are headed back to Raleigh for work, doctor's appointments, and to try to (briefly!) return to reality. Granna Jane is staying with us at RMH to keep Luke. At the same time we're saying goodbye to my folks, we also said goodbye to my aunt and cousin who'd come for a couple of days. Between all those goodbyes to all those caring folks, I'm feeling a bit down. I've never been good at goodbyes, and goodbyes here are the hardest of any I've ever had to say. I don't want people to leave! It's funny - this room can feel so small and cramped and full of people and all I want is to be alone with my baby boy. Then, all of a sudden, it seems so empty and I'm so sorry that there's no one here with me.

No medical news to report. Jay is slowly but steadily coming down on the heart meds. He's off epinephrine entirely which is a great big step. Others are being slowly tweaked, and so far his blood pressure and heart rate continue to be stable. They are tweaking his ventilator settings as well in preparation for the day when he will start breathing on his own. He's not there yet, and we don't really expect that big step to happen until the latter part of next week. They are doing chest PT, which consists of a percussor (resembles a mini jackhammer, and is about that loud) which thumps on his chest to break up the goo that's accumulating. He's not much of a fan, but frankly he is not a fan of the ventilator either. He's tried to pull it out on more than one occasion.
So, pray for safe travels for all those who are heading back to the real world. Tomorrow we'll report on our new digs at RMH!


Anonymous said...

Hugs and love on a sad day. But great news on Jay's progress.

Anonymous said...

I hope you like RMH. I think it is great that you got a spot there. I am a big fan.

We will pray for safe travels and little Jay. I hope Luke is feeling better as well.

Dee & Bob

ANAPatterson said...

hugs and love and thoughts and prayers.I hope the transition to Ronald McDonald House goes smoothly.How is Luke feeling these days?

Anonymous said...

Continuing to think of you all constantly. I saw my friend Kim today (whose baby was at Duke for 3 months, and who is doing great - remember that story of hope and healing when you feel discouraged) and she asked about you ... so many people with your family on our hearts and minds. Know this is a tough day. Take good care. Love, Mallory

Anonymous said...

Sending love and support your way on this day of goodbyes. I imagine it was hard for LaLa and Popper to leave you, too.

I hope all have arrived home safe and sound by now and that you're settling in your new abode.

When you get a chance, can you send your new address via email?

Love to all,

Lynn, Scott, and family

Cara Lynn said...

Looking forward to the day when your little tool guy will be telling friends about the jackhammer that the docs used on him!!
Seriously we're praying for your patience and strength--hoping that you will know that there are lots of prayers with you even when the room looks empty.
Take care of all of you & know that you are loved,
Cara Lynn

Anonymous said...

Your blog today reminded me of the song, "You'll Never Walk Alone." Sometimes, though, the physical presence of another really helps. Don't forget your new "close friends" (the doctors and nurses): they are very committed to Jay's health and well-being. They feel a closeness with you and Derek because you all are focused on one thing: Jay! Angels are all around you....

Michele G. said...

The RMH will be wonderful. The volunteers there are totally dedicated to help you and your family. They will become a second family to you if you want. The hospitality house in Wilmington,NC was a God send. There was always someone to talk to who was in a similar situation and Dad did not feel alone while staying there. It is a positive place filled with people who love to help!
The Gregory family, especially Gillian, sends love and prayers.

blair said...

Sending lots of love and prayers on a tough day. Keeping up the prayers and hoping your transition goes well to RMH.


Anonymous said...

Prayers to you all from Colorado.