Home!

 Hugs for Curious George!

We've seen a pretty amazing transformation over the last two days.  Theo has gone from lying on his back, sleeping all day and not smiling to smiling non-stop, laughing, and being very vocal.  It's like he couldn't dream of a happier place.  And we are LOVING it.  It makes all of the recent challenges worth it.

Theo has some work to do in the physical training department.  I doubt he'll be ready for the 2014 Olympics.  What's pretty cool is that Theo has been working with a wonderful physical therapist named Dianne since he was discharged from the NICU.  She came to visit him twice while he was in the PICU, and as soon as Nick called her on Wednesday and said, "We need help," she came right over to work with Theo.  And honestly, he's already getting stronger in the two days he's been home.  I know that sounds crazy, but we've both noticed that he's better at holding his head up now when we hold him, and he's rolled over a few times.  I think being home is where he needed to be.

Tuesday Update - May 28th - Homecoming for T

Natalie and I are happy to share that Theo was discharged today, and is now comfortably sleeping in his own crib for the first time since April 23rd.

Theo knew it was time to leave.  Goodbye, leads!

We are so thankful to have him here, and are overwhelmed with pride for the way our son handled the events of the past few weeks. We're not out of the woods yet; not by a longshot. Dubya is still taking her sweet time to wake up, and the process to ween him off of his sedation meds is somewhat cumbersome. But, by the grace of God, he has survived this ordeal.

Monday update - May 27th

Theo rolls in style

Discharge is still tentatively scheduled for tomorrow.  Theo will likely get another round of dialysis (after having the day off today), and if labs look ok and we are able to get the equipment and medications we need, we'll have our family under one roof tomorrow night.

Honestly, I am feeling really sad tonight.  I'm disappointed that, after five weeks in the hospital, we are bringing Theo home without a functioning kidney and in worse shape than when he left.  When I told my dad that, he reminded me that we're bringing Theo home with so much potential.  We're going to continue to pray for that potential to be realized.

Sunday update - May 26th

Theo has had a big weekend, and we have much to report.

First, we're happy to report that Theo was moved out of the PICU yesterday, and now calls a lavish suite on the 8th floor home. It's great to get a change of scenery, and we've even got a great view of Myers Park.

Daily dialysis has continued, and we continue to anxiously await Dubya's resurrection. He's been tired during the day, likely due, at least in part, to the dialysis which is known to make patients feel lethargic.

We got a positive test result from the renogram on Friday, showing that Dubya is taking in fluid. She's not yet spitting out much urine, but the team was pleased and thinks she is poised to recover at any time.

And, today, we got to take Theo outside.

Theo's first trip outside in over a month!

Friday update - May 24th

Happy Memorial Day weekend!

Theo, Aunt Hil, Grandpa and Harold the helicopter

Theo's had a good few days.  He is doing really well off the ventilator, he is more active and awake, and his belly looks much better.  As icing on the cake, he's been spoiled by my twin sister for three full days of loving, and he is still enjoying quality time with my Dad.

It's been fun to watch Theo get interested in toys and books again.  Hilary, my twin, brought him a toy helicopter named Harold, and he is enamored with it.  He finally moved both hands from under his head on Wednesday and held Harold in one hand while he used the other one to spin the blades.  When I tried to take it away from him at almost midnight, he cried.  He's ended up cuddling with Harold since then.

Wednesday update - May 22nd

Theo has had a great couple of days, but there is still work to be done.

On Tuesday, he was extubated and is no longer on the ventilator (again). His bowels started moving in a big way, and he is much more comfortable (again).

Mom and Baby T

He spent most of Wednesday awake, and continued to recover. Mom even got to hold him (again).

Now, we continue to wait for Dubya to recover fully. We are hopeful that it happens soon, but it could take days or weeks to get back into working order. In the meantime, Theo continues to receive a few hours of dialysis, and at this point the plan is to move him out of the ICU by Friday.

Our prayer is that we can bring home a boy who has a beautiful, new, functional kidney.

We continue to be amazed by the prayers and support we have received. As of now, Cool Aunt Whit is in 1st place(!) for the SF Kidney Walk. Your generosity has left us speechless. If you're interested in supporting her cause, you can find details at the link here.

We look forward to some smiles from Theo tomorrow, and many more to come. This journey has been breathtaking, painful, joyful, and overwhelming at times. We're thankful for God's provision, and for the opportunity to be a part of something we never expected to experience.

"Worry is not believing God will get it right, and bitterness is believing God got it wrong." -Tim Keller

Monday update - May 20th

We may not have much to report for a while as Theo continues the recovery process.  As a result, our blog posts will not be as frequent.  If we don't have an update, it means that we are still praying for Theo's kidney and bowels to work again!

At this stage, Theo is still sedated and on a ventilator, his belly is still huge, and he is receiving dialysis to take some of the pressure off his kidney.  Dialysis helps to regulate the toxins in his body and remove fluid/reduce swelling.  There is almost nothing that the doctors can do to speed up his bowels or make his kidney recover, so the treatment at this stage is to support him until his body is able to work properly on its own.  

Nick reminded me of the lyrics to "Great is Thy Faithfulness" today.  (Such a great hymn.) This verse, in particular, encouraged me today.  We continue to have bright hope for tomorrow.

Pardon for sin and a peace that endureth,
Thy own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

Ok, enough about Theo!  Many of you have asked how Whitney is doing.  Let me tell you, I have one amazing sister.  The world is a better place because of her.  While she is still in pain, and still recovering, you would never know it.  She is genuinely honored that she could donate her kidney to Theo.

I don't post this to solicit donations, but instead to allow you all to read about her experience in her own words.  My family has formed a team to walk in the San Francisco Kidney Walk on June 2nd, and if you click the link, you can read Whit's story.

http://donate.kidney.org/goto/whitneysylvester

National Kidney Foundation: 2013 San Francisco Walk

donate.kidney.org

The National Kidney Foundation's Kidney Walk is a fun, inspiring, community fundraiser which calls attention to the prevention of kidney disease and the need for organ donation. It's also an opportunity for patients, family, friends and businesses to come together to support the 26 million Americans...1

Thanks for your continued prayers!