Surgery=Success!!!!

I'm sorry it's been such a long time since my last update, but time has gotten away from me and to compound everything I have been fighting a cold for the past week (thank goodness Benton is sniffle-free thus far)!  We left off our story with Benton's surgery being imminent and that's where we'll begin.

On the day of Benton's surgery we awoke filled with excitement and nervous energy.  I was feeling particularly nervous due to a scary dream I had the night before, but Joe helped to steady my nerves and we got Benton prepped for the big day.  We had to keep him free of liquids for a certain number of hours before the surgery so the morning started with a trip to Giant to get pedialyte which Benton had been cleared to drink up until 4 hours before surgery.  We packed everything up and then drove to Childrens Hospital and checked in for his surgery.  As we waited for his name to be called my stomach was in knots.

Waiting for surgery to begin and then off to the OR!

Finally they called Benton's name and we were checked in with a nurse.  Vitals were taken, the anesthesia and surgery teams came by for us to ask final questions and sign consent forms and then all of a sudden they were taking my beautiful baby away on a stretcher to the OR.  We were told the surgery would take 2-3 hours with recovery time and that we could check Benton's surgical status on a board that almost looked like the arrivals and departures screen at the airport.  Once Benton was officially in surgery we tried to calm our nerves by stuffing our faces at the food court.  Luckily, the staff at Childrens is great and they called mid-surgery twice to give us an update on how Benton was doing which was much appreciated.

The board with surgeries

Then before we knew it the screen said surgery complete!  The surgeon came out to the waiting room and told us how everything had gone.  He said the gtube surgery was easy and there had been no issues, but the circumcision had actually taken much much longer than the gtube.  This was because Benton's foreskin had been collecting urine for so long that it had infected some of the surrounding tissue and they had to clear everything out.  Luckily we had decided to do the circumcision because it was a nasty infection waiting to happen.

Benton back in the ICU

First picture with his brand new gtube

Even though Benton was out of surgery we were told we weren't allowed to see him yet as he was still recovering from the anesthesia and they wanted to move him up to the Cardiac ICU.  Well this was torture.  The surgery was technically finished at 1:30pm but we weren't allowed into his room until about 3:30pm at which time we found out that the reason it had taken so long was because he had not come off of the intubation well.  Apparently while we were sitting in the waiting room they had tried to extubate and his sats had plummeted down into the 30s because he had suffered a small lung collapse.  My poor sweet baby!!!!!  Luckily the hospital felt comfortable keeping him extubated but had to crank up his oxygen all the way to 12 liters of high flow!!!  To give you some perspective when Benton had his pneumothorax they only went up to 8 liters so I was kind of freaking out.

Loving our little man

Such a fighter!!!!  With Jack the Bulldog his ever-present pal

Once Benton stabilized at 12 liters of oxygen and started to act like his normal feisty self everything seemed to come together.  Within two days Benton was able to be weaned back from 12 liters to 2 liters and we were able to move from the ICU to the regular Heart and Kidney floor for observation.  The nurses on the floor showed us how to use his gtube, give him meds and flush it.  They also showed us how to care for his circumcision stitches.  On the regular floor the doctors still needed Benton to wean down to his home oxygen level before we could be discharged and that last pesky liter is always the most difficult.  It took three more days for Benton to be weaned from 2 liters to 1.5 liters and finally we were able to go home!!!!!

Nothing entertains like a good book!!

Leaving the hospital post-surgery was one of the happiest days.  We were so relieved that this surgery was over after we had hemmed and hawed over it for so many months.  It truly felt like we were moving on to the next chapter in our lives.  We just continue to hope and pray that Benton gets healthier and stronger each and every day.  We pray that one day soon he will finally no longer require oxygen and that he can start successfully eating by mouth.  We appreciate all of your prayers for our sweet fighter....we know that God's grace has blessed our family so much and that your prayers have helped him through his toughest times and will continue to keep him strong.

Hey Guys I'm Ready to Go Home!!!

Sleeping away on our way home from the hospital

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

Fall fun!

This weekend we had a great day of family fun at Butler's Orchard.  We took Benton to pick raspberries, apples and pumpkins and got apple cider donuts.  So much fun!  We got a 20+ lbs pumpkin and carved it so that Benton could sit in it.  Pumpkin pics to come... but here are a few pics from that day:

 

Benton Can Sit!!!!!!!

This past month has been a major one in regard to the developmental milestones.  Benton has started sitting on his own!  At first it was merely prop sitting at the suggestion of our physical therapist but with a little work Benton has started to sit unsupported.  It seems that this "Big Boy" activity truly excites Benton and he loves practicing sitting especially if it means he doesn't have to do as much tummy time.  Here's just a few pictures of our cutie as he progresses in sitting over the past month:

First attempt holding Daddy's hands and then supported by Mama

Watching nursery rhymes and practicing

Getting better and then oops!

Fun with a new toy

This isn't so hard!

Yay!  I'm a big boy!