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!

Saturday update - May 18th

Not much new to report from the PICU today.  Theo had a stable day.  No blood transfusions, no trips to the OR, no new surprises.  That's a win in my book.

Theo with his peritoneal dialysis machine 2 days before transplant

The one thing we are still praying for is kidney function.  His creatinine climbed (slightly) overnight again, so Theo got his first round of hemodialysis today.  Dialysis allowed Theo to survive until he was big enough and ready for transplant, so we are so thankful for it.  But, we are praying that dialysis is a very temporary need this time, and that Dubya starts working again soon.  (I'd love if it started working tonight.)

Friday update - May 17th

Theo spent the day resting comfortably, and we started to see some signs of progress (again), but we're not out of the woods yet.

The upside: His fever is gone (hooray!) and his blood pressure remained in a great place all day. His potassium level normalized, and his urine output was pretty good. Also, his hemoglobin didn't plunge, so we're hopeful that most of the internal bleeding is done. Although, he might still need another blood transfusion at some point, maybe as soon as tonight.

Also, the infectious disease team has decided that they are comfortable stopping his antibiotic, so the plan is to stop it tomorrow.

But, there's still progress to be made.

Thursday update - May 16th

Thursday's update:
It was another tough day.  First, good news: the kidney biopsy shows no signs of acute rejection, which is a blessing.  There was some evidence of an allergic reaction to something (perhaps one of his antibiotics), but nothing that would cause the kidney to fail.  The less-than-stellar news is that Theo's transplanted kidney, Dubya, does not seem to be working very well.  His creatinine climbed again overnight, so he is in kidney failure.  The doctors think that now the hematoma has been removed, which was putting immense pressure on Dubya, the kidney will likely recover.  But it's a matter of time.  Tomorrow they will probably start hemodialysis until Dubya is recovered.

Wednesday update - May 15th

Wednesday brought another complication.  Theo's morning labs came back with a significantly higher creatinine (measure of kidney function) than Tuesday, suggesting deteriorating kidney function.  Around 10 am, it was retested to make sure that the morning value was not an error. The retest showed an even higher level. His hemoglobin was also low, and potassium high. Another kidney ultrasound was ordered.

Tuesday update - May 14th

Nick and I are both feeling a bit disheartened today.  We are getting restless to see Theo better and at home. He is such a happy kid almost all of the time in the hospital, but is now facing some new hurdles before he can get moved out of the PICU and then discharged.  The good news is that he seems to be past a lot of the major complications, and Dubya is still doing fabulously well.  Now, though, he needs to be able to tolerate his medications and feedings by g-tube.

For those of you who know Theo, you know that he's always had a problem with throwing up.  We hoped that would go away after transplant, but so far there have been no signs of it abating.  So today, after several throw up incidents yesterday and overnight, the doctors decided to stop feeding him through his g-tube (into his stomach) and went back to providing nutrition solely through his veins.  Even with just medication in his g-tube this evening, he threw up.  The GI (gastrointestinal) team is involved at this point, and there is some discussion about doing another operation to convert Theo's g-tube to a GJ tube, which would allow food to be deposited directly into a section of his small intestine, thereby bypassing the stomach.  But any solution will likely take time.

Sunday update - May 12th

Waving and smiling all day

It was a great Mother's Day for me.  Theo has made so much progress, and it was a blast to spend time with him and Nick today.  We spent a lot of time smiling, waving, giving "knucks," reading, and looking at each other.  Nick and I both held Theo today, too, which was good for all three of us.

Saturday update - May 11th

Natalie asked that I give her the night off and share a few thoughts about our day today, so here goes:

• Theo's bowels seem to be moving...freely(?), thank you very much.
• Dubya is still hard at work. The hospital's Pampers don't stand a chance.
• His vitals continue to stabilize.
• They've started him on low level feeds through his g-tube.
• And, this happened:

Seeing Theo smile today was one of the most beautiful things I've ever witnessed. He is starting to reemerge, and we couldn't be more thankful.

Friday update - May 10th

Three studs.  No ventilators.

After an 8 day stint, Theo is now off the ventilator!  It's so nice to see his full face again.   

We are feeling really encouraged.  I was able to sit and hold him today for a couple of hours, and it felt so good.  Theo has become more and more alert as the day has gone by, too.  Tonight we read "Pat the Bunny," and he patted the bunny, he played Peek-a-Boo with Paul, and he read Judy's book.  We see more and more of our Theo every hour.

Thursday update - May 9th

It was a better day today.  Theo was given the day to rest and recover, without too many attempts to push him on the ventilator or with physical therapy.  It was good to see him rest and recover a bit.  The highlight of the day: watching Theo give "knucks" (aka a fist bump) to his dad.  Our little guy is still in there under all the sedation!

Knucks!

We needed that today.  God is good.

Wednesday update - May 8th

It's Thursday morning as I write this, because I was too tired to post last night.  Wednesday turned out to be a day of two halves.  After Theo's diaper blowout in the morning, I felt like I was walking on air.  I thought that he had turned the corner, and would soon be making progress towards discharge.  Then, around 6 pm, madness kicked in.  Happy tears were replaced by sad tears.

Guess what?!?

This morning after rounds, the surgeon came in to take out a drain that Theo had placed in his stomach last week.  When he peeled back the blankets, he saw one of the most beautiful sights I have ever seen.

THEO HAD A MASSIVE DIAPER BLOW OUT!!!  Praise the Lord!!!

Tuesday update - May 7th

Theo's hands have been behind his head for a week

I will keep this post short and sweet, since there have been no major changes since yesterday.  Theo's belly is still massive, and we are still waiting for bowel movement.  The surgeons said that "it could be days" and the PICU doctors said that "it could be weeks" before they start moving. It's still not clear if the distension is caused by ileus (sleepy bowels that typically follow abdominal surgery) or a bowel obstruction, and no one is eager to take him back to the OR until there is reason to believe that there is an obstruction.

Theo's kidney function is stable, and his urine output is still good.  The doctors are adjusting fluid and medications in order to get him to pull off more than he is given, in the hopes that swelling will decrease.  Theo's comfort level still seems good, and we are starting to do some infant massage and movement of his limbs to remind him what it feels like to move.

Monday update - May 6th

There is not much news to report today.  It was a relatively uneventful day for Theo.  He is still very swollen, and his bowels have not started working yet, but his comfort level, blood pressure and urine output all improved today.  Our main prayer request continues to be for his bowels to work.  We're praying that they are simply taking their time, and that there is not an obstruction.

Sunday update

Theo kept his nurse busy today!  We were hoping for a quiet, uneventful day, but it turned out to have a bit more action than planned.

The more time we spend in the hospital the more we learn that medicine is as much an art as it is a science.  The doctors and nurses are doing their best to manage Theo's pain, blood pressure, kidney function, swelling and breathing.  Sometimes they have to let some things go in order to keep more important things working well.  Today, that meant letting Theo swell more than they'd like in order to get his blood pressure up to keep his kidney happy.

Saturday update

Saturday has turned out to be a better day.  There's still a long way to go, but we're feeling optimistic

after some progress today.  From a comfort perspective: Theo's temperature has dropped from 103 this morning to normal now, his heart rate is back in the low-100s, and he has seemed comfortable all day.  From an infection standpoint: the bacteria strains causing the infection have been identified, and are being treated more aggressively now.

Friday update

Resting peacefully before heading back to the OR

Friday has been another eventful day.  During the morning rounds, we found out that the culture from Theo's belly fluid had grown gram negative rods, which means that there is an infection in his belly.  That information changed the plan of action for the day, with the doctors and surgeons deciding right then and there that Theo would need another trip to the operating room to open him up, look for any source of the infection, and clean him out.

Thursday update

Theo's not doing terribly well. I was really optimistic on Wednesday, because he seemed more alert to me and we even got him to smile. Nick and I even got out together for a few hours while my mom stayed with Theo, and I kept telling him that I thought things were improving. 

Theo in his more alert state after a sponge bath on Wednesday

I was wrong. Theo has had a high temperature all day (ranging from 102.2 to 103.3), his belly got even bigger,  his heart rate was in the 180-200 range (even with morphine) and he was having a hard time breathing. Last night things got worse and the doctors decided to send him for a CT scan at 2 am to make sure there was nothing that had to be done immediately from a surgical perspective. Fortunately, there was nothing on the scan that needed immediate attention.