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 31st 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
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
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
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.
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| 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.
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| Brady in the CCHMC playroom a few hours after the initial NG tube insertion... not quite at acceptance |
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| Brady feeling much better while playing a game with Daddy |
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| 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.
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:
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| Brady after one of his NG tube reinsertions at NCH |
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.
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| Brady - the look of pure joy when he realized his "nose tubie" was gone! |
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| Brady receiving his first formula feed through his new PEG g-tube at NCH |
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| 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.
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| Brady showing off his PEG g-tube |
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| Brady getting "hooked up" for his night feed at home |
The Mic-Key Button
Brady went through outpatient surgery on November 19, 2012.
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.
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| Brady and Daddy in pre-op just before his Mic-Key button placement |
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”.
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| Brady and his new Tubie Friend, "Button" |
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| 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.
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| 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…
Pray that 2013 will be a good one for all of you and that Brady finds some comfort in the new year. Love to you all. Merilyn
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