April 5, 2012

Post 6

After a few weeks in, I felt confident about managing Gabriel's NG tube. His feeding and medicine schedule was still about the same. He would be fed every 3 hours and his medication would be dispensed every 4 hours. With both my parents working, I felt confident I could manage his care alone.

Gabriel was receiving
Occupational therapy, had numerous doctor appointments and I had to remember to reorder his medications on time. Looking back, it seems like a silly thing to worry about. At the time, I was a newly single mother who was over stressed and lacking in sleep. It all was overwhelming. Now, I’ve adjusted to all the doctor appointments, ordering meds and therapies that all have to be scheduled.  

I have to admit, I was still nervous about the
NG tube coming out. In the hospital, I refused to practice on my own baby. I thought, why put him through that if I don’t have to? I felt confident that having the tube dropped on me was enough training. Still, from the moment we arrived home, I dreaded it coming out. The nurse at the hospital explained to me that the tube should stay in for at least a month. While I’m sure she is highly educated and had good intentions, I wondered if she had ever brought home a baby with a NG tube and actually cared for them for an extended period of time.

Gabriel’s tube came out only a few days later.
It didn’t matter how careful I was. Any time he would spit up or cough, it would slide out. Sometimes I would just look away for a split second turn back to see that it was out and there was Gabriel just grinning away. He loved it when it came out.

One day we had a doctor's visit. I filled out all the necessary paper work. It was only about ten pages. I had Gabriel in my arms. He needed comforting, as he was a tad fussy. I struggled to hold him while filling out the forms. I looked at him and saw that the tube had come out yet again. I asked the nurse if they could reinsert it for me. They took me back and the doctor came in. He took the tube from me and laid Gabriel down on the table. I couldn’t help but notice the doctor looked a bit perplexed to me, as he stared at Gabriel for a bit. He then went towards Gabriel’s nose as though he was about to insert it, but I knew he was missing something. "Wait," I said. "Don’t you need a wire in the tube first?"

He then asked me "Do you usually have a wire in it when you insert it?" 
"Yes" I replied. I realized I was just going to have to do it myself so it would be done correctly. I was feeling a bit unsettled by what just happened. I recall my mom saying to me, "You have to be your child’s advocate." I am Gabriel’s voice. I am his parent. It was then, that I realized, I had to be prepared for everything.

So Gabriel's heart medication was due, and it was just the two of us, so I 
rolled up a few towels on each side of him to help keep him still. I noticed Gabriel was showing signs that he recognized the tube. He had a specific look on his face every time I would get ready to insert that darn tube. His eyes would get big, like saucers, and he  would turn his head from side to side almost as if to shake his head NO!  Poor baby, I dreaded doing that to him. 

To this day, I still cringe at the thought of what he must have been thinking. Who knows, that’s why every time before I started, I would give him a kiss and say, "mommy loves you" This became just a normal part of our week.

In April, I took Gabriel in for a routine cardiology visit. The cardiologist came in and listened to his heart. She then gave him what I think was an EKG. After reviewing the information, She calmly said "I am admitting him into the hospital."

I couldn’t believe it!  Here we go again.

Gabriel was in for about two weeks. The doctors worked with different medications, again. The poor little guy received and IV in his head and was hooked to monitors. I couldn’t stand the site of it. He was so brave. It was a very long couple of weeks. I read to him and sang to him. I tried to sing soft lullabies but he still cried. It wasn’t until I started singing
Bitter Sweet Symphony, by "The Verve", that he became calm and peaceful. Go figure.

He always gazed at me. I absolutely loved that. I told him every day that he was a good boy and life wasn’t about hospital visits. I told him life had a lot of really good things in it. Like love and laughter. That’s something I always try to do for him. I kept smiling or would just be silly. I did whatever it took to get that look on his face. He was still too small to laugh, but I knew when he was happy. I knew that look. It’s that look that encouraged me to stay positive and keep going.

One day, a nurse approached me and asked me if I would like a nurse at home. I had never heard of such a thing. She thought Gabriel should be monitored at home due to the complicated medications and the long schedule.  She said one tired person could make a critical mistake.  She gave me a number to call.  I spoke with the home healthcare company, I really had no idea how much this phone call would impact our lives for the better.
Truly amazing.

This company took Gabriel’s medical information and determined that he qualified for 60 hours a week of skilled in home nursing care. Such a blessing. I get teary even now just thinking about how I felt that day. I felt like someone had lifted a huge amount of weight of my shoulders. I felt like I could breathe again.

The company sent out several nurses for me to interview and I picked one. Now I just had to determine how to use the hours. I originally wanted to use them to go back to work. But the company policy is that the parent must be within the home during services. Besides I didn’t feel comfortable leaving a stranger with my baby. Plus, Gabriel needed nighttime medication and his heart rate taken every few hours. So ultimately, I decided the hours should be used for nighttime.

Finally, I could sleep. I couldn’t get over it. This would be the first time in months where I could actually sleep for more than a few hours at a time.

On the first night with our nurse, I went over Gabriel’s schedule with her. His grandmother (Nonni) made a very organized chart using
Excel.  She had already made a nice chart showing each medication with a matching syringe filled with water to show the dose for comparison.  It was a way to double check all meds given, and it was wonderful.

It felt odd having a stranger watch my baby, even if she had great credentials. Gabriel’s crib was on the first floor of our home. We had to do it that way because the trips to the fridge were so frequent and he couldn’t be left alone for even a second. The room I was staying in was on the second floor. I had only stayed in that room a few times since we moved in. Most of the time, I had slept on the love seat, which was next to Gabriel’s crib.

It hit me that night that I could now sleep in a normal bed. It was a great feeling. Still, I couldn’t take my mind off my baby.

I decided to put the baby monitor in my room, next to my bed. It’s kind of funny, but that night I still didn’t get any sleep. I couldn’t help but watch the monitor all night to make sure the nurse was ok.