A Not So Happy New Year

As I mentioned in my previous blog entry, 2012 was not a stellar year for our family.   In December, I started the big countdown for 2013 to get here.  For some reason, I felt that if we could just get out of 2012, everything would magically start looking up.  Totally logical, right?

We started a New Year’s Eve tradition several years ago with a few dear friends from college.  Our little celebration consists of three families (all with little ones), a house rotation every year, food, drinks, games, lively conversation and fun.  This year was our turn to host.  Hurrah!  The past two years we have gone to our friends’ homes and had to duck out early.  Two years ago we left early because Brady (age 2 at the time) could not settle down in his pack and play, cried non-stop for 25+ minutes, and ended up throwing up all over me shortly after 8:30PM.  We were forced to leave the party early in my vomit soaked clothes full of bitterness.  Last year there were no vomiting incidents, but our two kids refused to settle down and we eventually gave up after 10:00PM and returned home to put them safely in their old, familiar beds.  Not quite as bitter about that one, but I still desperately wanted to ring in the New Year with our friends.

As December 31^st quickly approached, I was almost giddy with excitement to say goodbye to the tumultuous year that was (see blog entry, “A Year in Review”), and a warm hello to the year to come.  New Year’s Eve was a pleasant enough day.  I spent most of it cleaning the house and preparing food for the annual NYE get-together.  I love hosting parties and I was excited to see our friends and watch our kids play together.  It had been far too long since we had all seen each other.  It really hit me on NYE that we would soon be leaving 2012 behind and we would finally be able to rid ourselves of the year… sort of like throwing out an old, smelly coat with holes and stains (and in our case, vomit stains… lots and lots of EoE-induced vomit stains). 

Midnight came and I felt a sense of relief flood over me.  2013 was officially here and I wanted to give it a great, big hug.  Close to 2AM, my husband and I decided to call it night.  We checked on the kids and changed Brady’s pull up and headed off to bed.  Our normal night routine consists of checking on Brady around 10-10:30PM.  Then my husband and I take turns getting up every few hours or so to check on Brady to change his pull ups and untangle him from his feeding pump tubing if need be.  Brady is now up to 70 mls/hour of formula that gets pumped into his stomach for about 11-12 hours each night.  With all that fluid being pumped in, there’s lots of urine coming out, hence the 1-3 pull ups changes per night.  Even “night time” pull ups are challenged to hold that much fluid.

2AM all was well.  Exhausted from a full day/evening of entertaining, both my husband and I fell into a deep sleep until our daughter woke up around 7AM.  I went downstairs first to brew some much needed coffee.  As I was heading back upstairs, I immediately smelled formula… never a good sign.  I quickly walked into Brady’s room to discover Brady sleeping on the wrong side of his full-size bed.  Then I realized that there was formula all over the bed on the side where he normally sleeps.  Then I realized that his mic-key button was no longer attached and was lying on the bed in a big puddle of formula.  This all registered in slow motion as my sleep-deprived brain stubbornly took it all in.  Then, panic quickly set in as I realized that Brady in fact needed his mic-key button reinserted.  I flew down the hallway and abruptly woke up my husband in full panic mode at this point.  I then flew down the stairs to get the emergency back-up mic-key button that we have thankfully never had to use. 

I then flew back up the stairs and back into Brady’s room.  Yes, there was a lot of flying around going on as I felt like my heart was about to beat out of its chest.  My hands were at a full-on shake and I knew there would be no way I would be able to reinsert the mic-key button.  My husband took over and tried to reinsert it a few times.  The opening was hard to find and Brady was awake and crying/screaming at this point.

It then dawned on me that we were all going to have to head to Nationwide Children’s Hospital Emergency Department (NCH ED) if this reinsertion was going to happen.  All four of us were dressed and in the car in less than 10 minutes.   That has got to be a record for our family.  We called both sets of grandparents to see who could come over to pick up our 2 year old daughter at the hospital.  Thirty minutes later, we were checked in and not long after that we were seen to triage.  After Brady’s initial assessment, we were ushered to his room where a doctor and nurse greeted us about an hour later.  That hour felt like a lifetime as I checked my watch every few minutes wondering how much his stoma had closed up. 

The doctor informed us of the game plan.  First, they were going to try to insert foley tubing the same size as his mic-key button tubing.  Brady’s mic-key button is a size “16 French”.  In reality, the insertion of the foley tubing consisted of my husband holding down Brady from the waist down and me holding Brady down from the chest up.  Brady screamed and cried as we desperately tried to hold him still as the doctor tried to shove in the foley tubing. 

She first tried the 16 French tubing.  No go.  The doctor then got out the 14 tubing and tried to shove that back into Brady’s stoma.  No go.  She then got out the 12 tubing and tried to push that in.  No go.  At this point, she turns to me and husband and says if she can’t get the 10 foley tubing inserted, she would have to call the surgical team.  I immediately felt like I needed to be sick.  Surgery on New Year’s Day?  Really? 

The doctor meticulously worked the 10 tubing into Brady’s stoma.  At last!  The tubing fit through and relief settled in for the entire room.  The doctor then said they would tape the foley tubing down to Brady’s stomach and they would be back in 30 minutes to take out the 10 tubing and put in the 12 tubing to slowly open the stoma back up.  Thirty minutes later the nurse and doctor were back and were able to get the 12 tubing to fit.  Thirty more long minutes passed and they came in to fit in the 14 tubing.  The doctor then mentioned she felt that because they were having so much difficulty getting his stoma to stretch, that she had already called Brady’s surgeon to get permission to reinsert a 14 french mic-key button instead of his original 16 french mic-key button.  That was just fine with me because I was definitely done with torturing my son.  After thirty minutes of the 14 tubing being taped down, the doctor and nurse were able to reinsert the 14 french mic-key button.  I wanted to cry with relief and joy. 

We then had to go down to Radiology to have a dye study completed to ensure the mic-key button had been placed correctly.  At last, mid-afternoon Brady was discharged.  Six hours in all at the Nationwide Children’s Hospital ED.  Happy New Year to us. 

GETTING IT OUT OF THE WAY

Here’s to hoping we’re getting the not so great stuff out of the way in early 2013.  A week after the reinsertion incident, Brady came down with the flu.  He lost quite a bit of weight that he didn’t have to lose and it took him seven days to fully recover.  Thankfully, because he has the mic-key button, we’ve been able to push more fluids the past two weeks with added calories.  Surprisingly, he has put the weight back on much faster than he ever used to before the feeding tube was inserted.  There’s that silver lining!  I knew I would find you somewhere in all of this.

The simple truth is that the mic-key button is gonna fall out.  It’s not full-proof and although I wish I didn’t have to worry about one more thing, at least now both my husband and I are more prepared for the next time the button does falls out.  Because unfortunately, there will be a next time.  Brady does have to go back in six months to have the 14 french mic-key button replaced with the 16 french mic-key button.  Oh joy.  Let that countdown begin.

In the meantime, I’m going to have a serious chat with the year 2013. 

 

A Year in Review

2012 was not a stellar year for our family.  In fact, it rather sucked.  We started a New Year’s Eve tradition several years ago with a few dear friends from college.  Our little celebration consists of three families (all with little ones), food, drinks, games, lively conversation and fun.  This year was our turn to host.  As December 31^st quickly approached, I was almost giddy with excitement to say goodbye to the tumultuous year that was, and a warm hello to the year to come.  So, you can imagine my disappointment when New Year’s Day came, and all hell broke loose.

But first… a year in review.

2012 – The Year of the Tubie

In late December 2011, Brady underwent his third endoscopy at Cincinnati Children’s Hospital Medical Center (CCHMC).  The scope was scheduled to check Brady’s eosinophilic counts after implementing a new drug therapy.   Brady started a new drug, Pulmicort aka the “budesonide slurry”, in September 2011. Our beloved GI, Dr. Franciosi, at CCHMC was happy to report that Brady’s scope looked good and that we would receive his biopsy report in early January 2012. 

You can imagine our delight and surprise when we found out that Brady’s eosinophilic counts were low.  In fact, he had ZERO eosinophils in his biopsy results.  The budesonide slurry was working!  Shortly after receiving those results the first week of January, Brady started to crash and burn for no apparent reason.  All of a sudden he began vomiting frequently again and quickly losing weight.  This pattern continued for three more months with slow weight loss and loss of appetite.  The roller coaster ride was officially up and running…again.

In April 2012, our family made the two-hour trek to Cincinnati for a follow up appointment.  I prepped myself for the possible conversation with Brady’s GI regarding a feeding tube.  Sure enough, Dr. Franciosi told me and my husband that we have done everything we can for Brady.  We have explored every option.  We have fought the good fight against inserting a feeding tube.  “Brady needs a feeding tube” were words I hoped I would never hear and words cannot explain my reaction to our conversation.  Actually hearing it out loud seemed unreal and no amount of preparation helped to prepare me for the huge amount of sadness that washed over me.  Both my husband and I broke down in tears during the conversation with Dr. Franciosi that day and I was amazed at his compassion when delivering the unfortunate news.  He even hugged the both of us and mentioned that we should look into therapy to help us through the transition.  I got the feeling he has had this conversation one too many times and knows what a drastic, life-changing event it is to suddenly have a child with a feeding tube.

It was determined that day that Brady would be back in a month to have a nasogastric (NG) tube inserted.  Dr. Franciosi wanted to first determine that Brady’s anatomy could handle a feeding tube, so an upper GI with barium swallow study was scheduled for the following week in Columbus.  After a horrendous upper GI, the result was normal and Brady was scheduled to have the NG tube inserted on May 22, 2012. 

As if things weren’t complicated enough, we also found out in April that Dr. Franciosi was leaving CCHMC and we had to make a very difficult choice… stay with CCHMC or transfer to Nationwide Children’s Hospital (NCH) in our hometown of Columbus.  After much discussion, we decided to transfer to NCH after we were connected to our new GI, Dr. Russo, who was familiar with and had researched eosinophilic diseases.  Although 2 hours is relatively close compared to the travel time many families have who visit CCHMC from across the country;  we ultimately felt that we needed to find a place closer to home now that we were going to become even more frequent flyers of the hospital.  Dr. Franciosi worked with our new GI and they determined that it was best for CCHMC to insert the NG tube and then we would officially transfer to NCH for the remainder of Brady’s GI care.

Although the days leading up to May 22 were filled with much dread, anxiety and stress… the day came before we knew it.  The two hour drive felt like an eternity, but was helped by family and friends who called to wish us well.  Thank you Shannon Feeney for remembering to call!  To this day, I so appreciate your help with distraction.  Thank you to the Kelley’s who dropped off a care package to the house with get well cards from your kids.  Thank you to Kristen Kelley, Kristen Taghvai and Megan Williams who all brought over meals to help with our transition back home.  Thank you to our families that helped to keep our daughter’s life somewhat normal while her mommy, daddy and brother were all at the hospital.  I am so appreciative for the love and support of all of you and I honestly don’t know what I would have done without you.

May 22 – The NG Tube Insertion

(First, I want to mention that I didn’t start this blog to paint a pretty picture of what it’s like to raise a child with EoE.  I also don’t intend to scare the living daylights out of parents who may be facing similar situations… but I feel that I must paint an honest depiction of our lives, the challenges we have faced, and what our reality truly looks like… not the watered down, sunshine and rainbows version.  And for that, I’m sorry if what I say offends or frightens anyone in the EoE world.) 

As we checked into the hospital for Brady’s 3-day stay, I felt sick.  I couldn’t believe what was about to happen to my son.  I couldn’t believe that the plan for NG tube insertion was to have Brady held down at the bedside with a team of nurses shoving a tube down his nose and into his stomach.  All with no pain meds or sedation.  Nothing.  It sounded rather inhumane to me, but this is how it is done.  The nursing team also said it would be better on Brady and for us as the parents if we were not in the room at the time of insertion. 

The team entered Brady’s room and my husband and I immediately left to walk several yards down the hall.  Unfortunately, that space did not silence the screams that we heard from Brady as they inserted the NG tube.  Minutes felt like hours as they determined that the placement was correct and the tube coming out of his nostril was effectively taped down.  They also put restraints on both of his arms to keep Brady from bending his arms to try to take the tube out.  The restraints were made of a sports ball themed material, which I appreciated the thought, but it still caused Brady much anxiety to not be able to bend his arms.



Brady a few minutes right after the initial NG tube insertion



Distraction

From there, my husband and I were charged with distracting Brady to keep his mind off what just happened and to help him forget that he now has a tube taped to his face and running down his throat.  Brady cried and fought and cried and fought to the point of exhaustion.  We tried walking him around the GI floor, walking him around the hospital, even jumping on a shuttle bus to ride around the perimeter of campus to help distract him.  Thankfully, CCHMC also had a play room that helped Brady turn the corner of being miserable to somewhat accepting that he now has a NG tube and it was in fact, here to stay.  It was a long three days to say the least and Brady tried to pull the tube out multiple times and it had to be reinserted a few times.  He quickly learned that the tube was staying and eventually he left it alone after 3 short days. 



Brady in the CCHMC playroom a few hours after the initial NG tube insertion... not quite at acceptance



Brady feeling much better while playing a game with Daddy



Brady looking out his window at CCHMC anxiously awaiting his discharge



Plan of Treatment

It was determined that Brady would receive 75% of his daily caloric intake from Boost Kids Essential 1.5 Cal via the NG tube.  He would receive three 100 ml bolus feeds per day and 12 hour nightly feeds at 50 mls/hour.  We received a quick tutorial in the hospital on how to give bolus gravity feeds during the day.  When we returned home we got a 15-minute tutorial from Brady’s home health nurse on how to hook him up to his Infinity feeding pump at night.  It felt like baptism by fire.  All of a sudden two non-clinical parents were quickly trained and up to speed on all things NG tube feeding related. 

The Aftermath

Summer was upon us and reality hit that Brady would not get to enjoy the typical fun water activities that summer brings.  No pool, no splash pad, no June beach vacation with our family that we had to cancel.  The week we were supposed to be on vacation was filled with bitterness and resentment for the drastic turn our lives had taken.  I needed that time to wallow in self-pity before I eventually realized that wallowing wasn’t doing me or my family much good.  So, we got creative and came up with low water pressure sprinkler time.  Brady couldn’t get his face wet due to the bandages and sensory issues around changing out the bandages.  I honestly don’t know what was worse during this time… the initial feeding tube insertion, the re-insertions, or the bandage dressing changes.  I think it was safe to say that it was all equally horrible for him… and for us as his parents.



The Reinsertions

Brady threw up his tube a few times and had to have the NG tube reinserted multiple times in 6 short weeks. 



Brady after one of his NG tube reinsertions at NCH

 His new GI determined that it would be easier on Brady to have a gastrostomy tube (g-tube) inserted.  This way Brady wouldn’t have to suffer through the reinsertions and it was also determined that Brady would need to have a feeding tube for a “long time”.  Every GI physician differs on opinion on proper protocol for NG vs. g-tube insertions.  At NCH, they prefer to go the NG tube route first (before G-tube) to determine a few things:

1.      The child can tolerate tube feedings

2.      The child will thrive on tube feedings

Thankfully, within six weeks, Brady was able to do both.  Dr. Russo then scheduled Brady’s G-tube surgery for July 11, 2012.  I cannot say enough about the care Brady received from NCH.  The entire team from the surgeon, residents, nurses, and PCAs were simply incredible.  After living with a NG tube for six dreadfully long weeks, Brady was free of his “nose tubie” as he liked to call it. 

Five hours post-surgery, Brady at last realized his nose tubie was gone!  He did not yet realize that he now had a “tummy tubie”.  However, I vividly remember him telling me that he was so happy his nose tubie was gone.  Although he never complained during those six weeks, he finally admitted to me that day that, “My nose tubie hurt me and I didn’t like it.”  My brave little man who was so tough for so long finally admitted that his NG tube experience was rather unpleasant.  And that simple, honest admission made me so sad for what he has gone through in his short life.



Brady - the look of pure joy when he realized his "nose tubie" was gone!



Brady receiving his first formula feed through his new PEG g-tube at NCH





Brady checking out the views of Columbus from right outside his room at NCH


The Return Home

After three days at NCH, we brought Brady home with his new PEG g-tube.  This transition was much easier than the NG tube insertion.  However, my husband and I took turns sleeping on a twin bed in his room the first week we were home to help him (and us) transition.   We did the same when we returned home after the NG tube insertion.   I remember lying down in his room at night and listening to his feeding pump go on every few minutes to dispense the 50 mls of formula per hour.  As I heard the formula pump, I remember crying.  The tears seemed never-ending as I thought about what I wanted for my son… and this was the exact opposite of what I wanted for Brady.  But eventually reason came and I quickly reminded myself that Brady needed this pump to survive, to live, to grow and to thrive.  Eventually I came to acceptance with my love/hate relationship with the feeding tube and pump.

The next three months were uneventful, thank goodness.  We just awaited Brady’s fifth surgery which was to take place 90 days after the PEG g-tube was inserted.  This protocol at NCH allows the g-tube track to form and begin to heal before inserting the more convenient mic-key button g-tube.  A week before Brady’s scheduled mic-key button placement, Brady developed lung congestion and the surgery was cancelled and rescheduled for a month later.  Four very long weeks passed and finally Brady’s fifth surgery was upon us.



Brady showing off his PEG g-tube



Brady getting "hooked up" for his night feed at home

The Mic-Key Button

Brady went through outpatient surgery on November 19, 2012. 



Brady and Daddy in pre-op just before his Mic-Key button placement

 Many parents of kids with mic-key buttons offered words of encouragement and said how much they loved it.  They weren’t kidding!  Gone was the PEG tube that we had to wrap daily with ace wrap to keep from getting hooked on anything and everything.  I was not expecting Brady’s reaction to his new tubie though.  When he realized that evening that his PEG tube was gone, he actually got very upset.  Change has always been tough on him and this was especially so. 

Thank goodness for Tubie Friends (http://www.tubiefriends.com)!  I contacted this non-profit organization in October to order a Tubie Bear friend for Brady.  These “friends” are from Build-a-Bear and are made by this company to include the same exact g-tube that the child has.  When Brady was having a hard time accepting his new mic-key button, I quickly brought out his Tubie friend and Brady surprisingly bonded with his new friend immediately.  When he saw that his bear also had a mic-key button, suddenly Brady’s tears subsided and the fear started to go away.  He then aptly named his new friend, “Button”. 



Brady and his new Tubie Friend, "Button"



Brady showing off his new Mic-Key Button



The remainder of November and December were filled with such a huge sense of relief -- Mostly because we had all made it through the NG tube insertion, the new tube feedings, the PEG g-tube insertion, and the Mic-Key Button insertion.  We had a follow up appointment in December with Brady’s GI where it was determined that Brady would not have to undergo any surgeries or endoscopies for “awhile”.  Whew!  We could use a break.



Brady not happy about taking a break for a bolus feed on Christmas day



So long 2012!  You were quite unpleasant at times but you also made my son healthy.  You helped my son become stronger.  You helped my son gain desperately needed weight.  You made me angry and bitter at times.  You made me cry.  You gave me compassion and empathy.  You gave me strength.  You gave me hope. 

To be continued…