Appointments, an Impedance Study and the Long Wait Till Surgery

My beautiful cutie

It's been a month since I gave an update on Benton's medical status and a lot has happened.  Since Benton's swallow study we have been inundated with appointments to help us make the final decision on surgery.  To be precise we have had 10 specialist appointments, 15 therapy appointments and 1 impedance study where Benton was rehospitalized.

Cutie in overalls!

The many faces of cutie

First, we met with Benton's pulmonologist and we discussed his swallow study results.  We had been under the impression that with the swallow study results showing microaspiration we should immediately sign up for both a gtube and nissen, but our pulmonologist actually didn't agree.  He thought that the nissen had too many complications and doing it unnecessarily could actually make Benton's pulmonary hypertension worse.  So our pulmonologist recommended that we get an impedance study before making a final decision on surgery.  An impedance study is where a doctor would place a ph probe in Benton's nose and thread it down through his esophagus and leave it there for 24 hours.  The impedance study will measure how much reflux occurs during the 24 hours as well as measures how high the reflux goes.  This will allow the doctors to know how bad Benton's reflux is and whether it truly threatens his airway.  If the study shows that the reflux doesn't go near his airway there is little chance of aspiration and then the doctors said a nissen wouldn't be necessary.  We all agreed to go forward with the impedance study.

Outfits Outfits Outfits

To schedule the impedance study we needed to make an appointment with a GI doctor to review Benton's case and agree to place the ph probe.  Luckily we were able to make a last minute appointment out in Rockville.  The GI doctor listened to our concerns about Benton's microaspirations and his recent vomiting and coughing and yet she said a nissen wasn't warranted.  She even went so far as to say she didn't believe we even needed to do an impedance study but that if we were interested in going forward with the study she would be happy to place the probe.  Her only caveat was that Benton needed to be admitted to the hospital for the study.  This was because having yet another probe in Benton's nose could obstruct his airway to such an extent he might have trouble breathing.  It kind of baffled us that the GI doctor - i.e. the one who is an expert in reflux-related matters - didn't believe Benton needed a nissen; especially after the Georgetown GI doctor had immediately said that Benton needed a nissen and wouldn't even listen to our concerns.

At this point we were incredibly torn about the surgery.  It seemed that none of our doctors could make up their minds regarding the nissen.  Our Georgetown doctors were pro-nissen and our Children's National doctors were anti-nissen.  It was two camps and after each appointment we felt swayed one way and then another depending on that specific doctor's opinion.  It was a toss-up and we were hopeful that this study would be the final lynch pin in our decision making process.

Practicing standing - What Fun!

But before we could get to the study we had appointments with our pediatrician and our cardiologist.  At this point we were set for surgery on September 8th and we were just hoping against hope that we would be able to get the study results in time for us to make a decision regarding surgery.  In just the span of a few short days everything about the surgery got turned upside down.  The GI doctor decided that we would not be able to get the impedance study results in time for the surgery on 9/8 so she requested that the surgery be reschedule for 9/15.  Fine. The surgery would be a week later and we would have more time to discuss the study results with our doctors.  But then we met with our cardiologist.  She expressed concerns about Benton's pulmonary hyptension and requested that our surgery get moved from Georgetown Hospital to Children's Hospital so that a cardiac anesthesiologist could be in the OR.  While we obviously want the surgery to be done in the safest environment possible we were also on our last leg.  We just wanted this surgery to be over and a decision made.

Yummy spoons and time in the high chair

Fun with food and toys!

Now it was time for the impedance study.  We brought Benton to Children's Hospital and had the ph probe placed in his nose.  The ph probe is much more stiff than the ng tube and Benton was inconsolable for hours after the procedure.  After much confusion regarding our admittance post-placement we were finally settled into a room in the pulmonology wing of the hospital.  Over night Benton started requiring more oxygen than his normal 1 liters and the doctors believed it was likely due to the extra probe in Benton's nose and possible extra fluid on his lungs.  The situation was a bit more precarious than the pulmonology team wanted to see and they decided to have Benton admitted to the Cardiac ICU unit so they could monitor his pulmonary hypertension.  Luckily after a dose of lasix they were able to start weaning Benton's oxygen back to his normal levels.  The next day after the 25 hour study was complete we were able to go home!!  Now we just had to wait for the results.

Hooked up to the ph probe at the hospital

Love at the hospital

Within a few days of the study, the results were in.  Despite Benton coughing incessently during the study and at one point vomiting when he shoved his hand into his mouth and gagged on it, Benton DID NOT have significant reflux.  The doctors said that there wasn't significant reflux at all and only one episode where he had it near his airway (i.e. when he vomitted).  The doctors and surgeon all agreed - Benton didn't need a nissen!!! It was caveated by the surgeon saying that they could always do a nissen later if need be, but it looked like it was unnecessay.  Yay! After waiting so long for a definitive answer we finally had one.  Our gut reaction agaist the nissen had been correct :)

Ready for Michigan football

Joe showing Benton what a touchdown is

Now that we had our long-awaited answer - we just wanted to get the gtube and circumscion surgery behind us.  We had held out on surgery for months wanting to make sure we were making the right decision and it was finally at our finger tips.  But now we had to schedule the surgery at Children's Hospital and we found out that it required more lead time than Georgetown.  After meeting with the pre-op surgical team, the anesthesiologist and getting cleared by Benton's new pulmonary hypertension specialist we finally had a date for the surgery - September 25th.

Love him

We are eagerly awaiting Benton's surgery so that we can move past this phase.  It seems that all we have talked about for months has been surgery and the question of "to nissen" or "not to nissen".  Both Joe and I are ready for this phase to be past us and for us to get to watch Benton hit new developmental milestones once the ng tube is out of his nose.  We are hoping that once surgery is complete he will start babbling more, enjoy his taste of solid foods, and have less coughing fits triggered by his ng tube.  Each day we get one day closer to surgery and we are so hopeful that it will be an easy recovery and it will make Benton's life better in every way.

Fun with Grandpa

Mommy and Daddy Time

Please pray for Benton's safe recovery from surgery.  We are hopeful that he can be extubated quickly post-surgery and that his pulmonary hypertension doesn't flare up and his lungs haven't been scarred from micro-aspirations. We also pray that he does not have any complications from surgery and that he stays free from colds and other infections while his lungs heal.  We appreciate all the prayers and thoughts you send our sweet boy's way.  Each prayer gives him strength and us hope that he can continue pushing forward on his long road to recovery.

Auntie Lisa and Uncle Chris visit Benton!

Playtime at the park