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 31st 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.
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