June 28, 2012

Post 8

Gabriel recovered from his G button and fundoplication procedure and we were sent home a few days later.

Gabriel would now be hooked up to his feeding pump a full hour every three hours during the day, and then it would run all night. I soon realized the risk of Gabriel entangling himself and possible strangulation from the tube. This became a constant worry to me. All the child care experts and any baby book will tell you that by today’s standards a baby should have nothing in his crib, but should be dressed in a single layer of warm clothing. Having blankets, toys, and stuffed animals increases a baby’s chance of dying from
. However, through research you’ll find there is hardly any literature on how to manage a baby with a feeding tube in his crib. It was nerve-wracking. Strangulation from the tube is a real possibility, even to this day, when he is hooked up to the pump. I can’t leave him alone for a second. In addition to that, there is the fear of him pulling out the G button by snagging or pulling the tube in some way. I had to thank my lucky stars my son was approved for a nighttime nurse so I could sleep at night. But that got me thinking. How do other families, who are not fortunate enough to have someone to monitor their loved ones, manage their children that are on feeding tubes and respiratory equipment?

Not too long ago, I was watching a documentary on the Discovery channel. There was a story about a 16 year old boy with
cerebral  palsy and his parents. The life they led seemed unreal to me. They were a typical middle class family. The mother stayed home with the boy, and the father worked long hours to pay the bills. I watched in sympathy as the mother carried her boy from room to room as they went about their day. Their home was not wheel chair accessible. The father was unable to lift his son due to several heart attacks he had endured the past year. The mother was left to do almost everything for him. She bathed him, fed him, dressed him etc. She even slept in his room every night on the floor as he was prone to seizures and suffered from sleep apnea. The mother was understandably fearful of what might happen to him during the night. She carried this heavy weight upon her.

When I recalled this I immediately felt selfish. I had to mentally step back a moment and remember how blessed I really am. I started looking for products that may help with the G button. Eventually, I discovered a simple and delightful product to help protect the G button from tugging and aid in keeping the button clean. The company is called "cute as a G button". The product is a belly band that snuggly wraps around your baby’s tummy. Simple product, great idea!

As weeks went by, just like everything else, Gabriel and I adapted to life on a feeding pump. Before I knew it, I had Gabriel in one arm and was pulling the IV pole and pump with the other. If we went out, I would remove the feeding pump off the pole, stick it in a backpack, and carry it with us.

The nurse we had been using took a job working at a hospital and gave me her two weeks notice. I spent a great deal of time interviewing prospective applicants, and when I found a nurse that met the criteria, I trained her on how to care for Gabriel. She told me she was confident in what she had to do for him:  monitor, clean, refill his feeding pump, distribute meds every few hours, and check his heart rate every few hours.

I cautioned her about being very mindful of where the tube is at all times, so to prevent accidentally pulling it out of his stomach. On her first night of the job, around 3 AM, the nurse woke me up and exclaimed, "The button has come out." Half awake and in haste, I made my way to Gabriel. As I came closer his crying screams got louder. Then there it was, a hole in his stomach where the button had once been.

I knew we had to get it put back in very soon. During our most recent hospital stay, the doctors stressed that if the button does somehow come out it must be replace within two hours. Otherwise, the hole will likely close up and Gabriel would have to undergo surgery all over again.

My grogginess wore off, then it hit me... Gabriel was due for his heart meds. We had to get the button in, and it had to be done now.

I looked to the nurse to replace the button. She explained to me she had never replaced one before and didn’t know how to do it. This was news to me. During our initial meeting she told me she was confident in all areas of G button care. Now here she was, telling me she couldn’t do it. I wasn’t pleased. I had a good idea how to put it back in, but I had yet to actually do it successfully. I had high hopes that the nurse could do it for me. I was dreading  attempting to insert the G button. I never had a problem dropping the NG tube, but for me, the G button was a whole new ball game. I could barely stand to look at the hole in his stomach much less try and push something through it. I needed help that the nurse obviously couldn’t provide.

Feeling flustered, I called on my mother and she immediately showed up, rolled up her sleeves, and proceeded to insert the button. Gabriel’s cries of pain were almost too much to bear. An hour had gone by with no success; I was getting ready to pack his diaper bag to go to the ER to replace this stubborn button. That was, until out of nowhere, I heard an explanation of joy shout out "I got it in!" When I heard my mom say this, all I could think was... thank God for moms! I realized I would have to suck it up next time this happened. It was apparent the button coming out would be a common recurrence.

It was now the end of June 2011,
Gabriel was at his father’s Saturday night. I was at home sleeping soundly. Around 2 AM, I received a frantic call from Gabriel’s dad. He told me Gabriel had stopped breathing and was at the hospital.

When I heard those words, a familiar sickening feeling came over me. He told me what hospital they were at and hung up. I took the 30-minute drive to the hospital much faster then I should have. I couldn’t get there fast enough. Once I arrived, I was immediately taken to the room Gabriel was in. By then, my parents had arrived and Gabriel had quite the posse. Doctors, nurses and family surrounded him. I went over all the meds he was currently taking with the staff. Gabriel appeared to be okay. He was lying in his hospital bed surrounded by cushioning blankets. The doctors and I were discussing the details of Gabriel’s blue spell episodes. I asked again if it may have been a rapid heart rate that could be the culprit. A nurse intervened and said "It’s hard to say if his heart is causing the blue spells unless we see it on the monitor."

Almost as soon as she said that, the monitors sounded the alarm. It was happening again.

He stopped breathing. This was the second time he stopped breathing that day. The staff acted quickly to give him oxygen. I stayed by his side, but all I could do was watch helplessly. It wasn’t long before he came out of it, just as he had done before. With the oxygen mask in place, he slowly started to breathe again. The blue color slowly faded as his respiratory rate steadily increased.

Now everyone had seen it. During the blue spell, the heart monitor displayed a normal heart rate. Now there was no doubt. It wasn’t his heart causing the episodes. This was an entirely new problem. It was his airway.

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