One Line Out, One more to Go

Topher saw his surgeon today at Children’s Hospital.  He decided to take out the Gastric Tube.  It was a rather simple procedure: cover the area with gauze to prevent spray and yank.  Oh, and keep the toddler somewhat restrained while this is happening.  It didn’t seem to hurt since Topher didn’t cry much afterwards.  It also helped that Shane was there to restrain Topher.  The last time I was there by myself and I got light-headed when the surgeon cauderized the G-tube site.

Topher’s scheduled to get his broviac (permanent IV Cath) removed about 5 weeks from now.  He’s been eating like a champ and has gained about 4 pounds since he was hospitalized in Orlando 2 months ago.

In other news, Topher has a vocabulary now!  It used to be just grunts and pointing.  Now he says: mama, dada, baba (for bottle), mmmm for more (as well as signing more at the same time), and just tonight, ga ga (I was trying to teach him “go”).  We’re excited that he’s finally catching up, speech-wise.

Thanks again for all of your help, thoughts and prayers.


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2009 Year End Summary…

Our usual tradition of Christmas cards includes a letter that shares our adventures from the year.  But this year, we (more Clara) felt that our 2009 wasn’t worth sharing.  Or, at least, it wasn’t worth reliving since we had some personal nightmares.  So, as I wait for a representative from (I’m approaching 17 minutes, should I hang up??) to dispute a charge, I thought I’d “share” my 2009…. via blog…

2009 started off in the usual way: our dog, Bailey got her yearly check-up.  Did you know that she was a Christmas present when Shane and I were in Indianapolis?  Then, in February, it was a balmy 60 degrees (no snow!) and I had decided to take the boys and Bailey out for a walk.  Without going through all the details, Bailey was attacked by a pitbull who ran out of its yard.  Bailey suffered a broken leg, but thankfully survived.  The cops came and shot the other dog.  But we’re most thankful that neither I nor Toby or Topher were harmed in the incident.

March comes around and Topher celebrates his first birthday.  We had a delicious lamb shank dinner from Ayse’s, a little Turkish place in Ann Arbor…

Around April or May, we found out that we will definitely be staying in the Columbus area until June 30, 2012.  Shane was officially accepted into the Adult Electrophysiology Fellowship at (the) OSU.

Then, during the entire month of May, Toby was finally potty-trained in time for our vacation in June.

In June, the whole family traveled to the San Francisco Bay Area to visit with Clara’s family and dear friends from college.  We also met Clara’s twin nephews (Raiden and Thorin) for the first time since they were born.  Toby and his older cousins (Malachi and Gideon) had a blast chasing pigeons on Pier 39, too!  Toby and Topher also got to play in a swimming pool for the first time.

Sometime in July, Shane and I started a new “hobby” of sorts: we started shopping for and designing  our Dream House.  After looking at about 30 model homes, some more than twice, we’ve finally settled on a favorite.  If you’re ever in town, we’d love to show it to you!  Of course, it may take a few jobs before we finally settle down and build it, but we have a solid idea of what we want for the future.

In August, Clara joined a women’s group called “Side by Side.”  It’s an offshoot of CMDA (Christian Medical/Dental Association) full of doctor’s wives.  The women’s husbands span the entire training/career spectrum from medical school through attendings.  It’s been a blessing to go and share with other women the burdens of long work hours, parenting as a “single” parent (it feels like it to some); plus, they provide childcare, so the boys have enjoyed new friends.

In September, Toby started preschool.  He’s really enjoying it!  As Miss Lori says, “Toby always has something to say.”  So we don’t worry about shyness with him.  He’s even learned how to write his name!

In October, Toby and Topher went trick-or-treating for the first time.  Toby was Robin, Batman’s sidekick.  🙂  Topher also had a hearing test: his ears are just fine.  He’s just ignoring us!

And in mid-November, Shane had the honor of presenting an oral abstract at the American Heart Association’s national conference in Orlando, Florida.  To celebrate, we decided to take the entire family to Disney World!  Even the boys’ godparents came a month early to see us there.  Unfortunately, this trip turned into another nightmare.  Topher started throwing up within 10 minutes of checking in to the hotel and didn’t stop until about 3 days later when he had a seizure (from dehydration) and was admitted into the Arnold Palmer Hospital for Children in downtown Orlando.  Topher had 2 bowel surgeries (he had complications from his previous bowel surgery when he was in the NICU which caused a bowel obstuction that didn’t allow anything to go through) and didn’t get back to Columbus until the Monday after Thanksgiving.  Topher was finally discharged from Nationwide Children’s Hospital one day before Toby’s 4th birthday (Dec 10th).  He still has a broviac (permanent IV) and a gastric tube on him until further notice.  Thankfully though, he’s not attached to any IV pumps.

Which brings us to December: Toby turned 4!  We can’t believe our little boy is already 4.  He’s quite accomplished.  He loves card and board games; plays PS2 games that were meant for 10 year olds, and now enjoys  Wii bowling.  He also likes to tell jokes that make no sense.  I’m told this is typical of kids his age.   He does have some simple chores (he;s not always playing!): putting away the utensils, sorting and matching socks, and (when I remember to) swiffering the kitchen floor.

So there’s our 2009!  Not our favorite, but there you go.  Hopefully we’ll have a less eventful 2010.  God bless you and yours for the upcoming New Year!

With Love and Thanksgiving,

Shane, Clara, Toby, Topher & Bailey

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Xray Study results

Topher had an x-ray study done this morning.  Unfortunately, the Radiologist couldn’t use his G-tube to deliver the barium, so Topher had to get a tube down his nose.

Results: the obstruction wasn’t there anymore.  There’s a slight narrowing of his bowels where he had his first surgery where they cut out the dead gut, but that’s about it.  He’s been given the approval to “pig out” (as Shane puts it) on table food.  So far, he’s only enjoyed 3 Chicken Mc Nuggets.  We’ll be having rice and brocoli tonight!

So far, it looks like he may not need another surgery if all goes well with table food.  Thanks again for all your help and prayers!

Merry Christmas!

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Surgical Outpatient Follow-Up

Topher had an appointment yesterday with his surgeon.  Things are staying the same until he has another x-ray study, which will be scheduled for January.  If the study goes well, Topher will graduate to table foods as the next test.  Until then, he’ll keep his lines for access and stay on his restricted diet of stage 2 baby food and milk & juice.

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Home Sweet Home!

Sorry for the lack of updates: our modem decided to stop working the day Topher was discharged (December 10th).

Topher is on a restricted diet of pureed baby food (stage 2) and all the milk and juice he wants.  And since “pureed” means mushy to us, he’s been enjoying frosting (Toby’s bday cake), ice cream, jello, and pudding, too.  🙂

We’re thankful that he’s not attached to an IV either.  He still has a gastric tube and a broviac for access in case the docs need to draw blood.  His surgeon will follow up with him on a weekly basis to see how he’s doing.  So far, he’s been producing heavy diapers, both soggy and stinky, so it’s a good sign that food is going through.  There still may be a chance of another surgery, but we won’t know for sure for another month or two.

Merry Christmas everyone!

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Results and Decisions

Shane spoke with Topher’s surgeon earlier today (Tuesday, Dec 8th) about yesterday’s upper GI study.  The loops are still a bit dilated, so to decrease any possible stressor to the gut, Topher is back on fluids and won’t be allowed any solids until further notice.

Our original intent of bringing Topher home with his IV and TPN may come to fruition, with a slight change.  Topher will be allowed bottles of juice and/or milk (or formula) during the day [or whatever else the Nutrition Dept can come up with to keep his calorie count the same as if he were eating normally]; this would allow him to be disconnected from his IV and give him some freedom to move around.  Then he would be connected to his TPN via IV at night while he sleeps.

We don’t know when he’ll be able to come home though.  Also, his surgeon would prefer not to go back in to explore Topher’s bowel unless he absolutely has to.  So, we will continue to wait and see…

The good news is: Topher seems to be regaining some strength.  I hear he’s been walking the halls during the day.  And when I visited on Monday, he wanted to climb on the furniture (with some help), even with a bloated belly from the study.

We’re grateful for everyone’s help and prayers.  Hopefully he’ll be home soon.  Our Christmas tree stands empty as Shane refuses to decorate it without Topher’s help.

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Yet another Upper GI study…

Topher had another x-ray study done today.  No obvious obstruction was found, but it was also not a normal study.  He may still have a partial bowel obstruction, so we still have some more waiting to do.

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