Day 35 – June 12, 2012

The fire was up to 41,000 acres and only 5% contained. The latest map showed the ranch might be okay. We crossed our fingers and prayed.

The NICU doctors raised Ty’s feedings to 71 ml per feeding. They had added a high protein 30 calorie formula to his milk to build protein and keep up with his weight increase.

The girls and I went for Ty’s 10:30 feeding and he didn’t do very well. He couldn’t really breathe and only drank about 12 ml. One of the nurses we’d bonded with was on today and she said she would try to suction him really well and see how he did at his 1:30. She’d contacted the ENT doctor and he was going to come by at lunch and see Ty.

His nose sounded worse so we didn’t even try to work him up with a feeding at 1:30. It was discouraging. I then got a call from the ENT doctor. He’d been up to see Ty and said that he thought Ty needed to go back in for surgery so he could scope him, take pictures and possibly place new stents. I was devastated.

Mom took the girls to karate for me, then they went home with Tim from there. I had planned to spend the night with Ty at the hospital in the side room in the NICU to prepare for him to come home. Even though we got the news that he may be having another surgery, we thought my spending a night with him would help. I was so excited!

But when I walked to Ty’s bed, I felt like I was walking into a nightmare.

Our nurse, the neonatal nurse practitioner, the charge nurse, the neonatal respiratory therapist, and another nurse all filled Ty’s bed space. Something was wrong. Very wrong. My heart raced. I set my overnight things by the chair and turned to see the look on the nurse’s face. She was focused and stressed and not at all her cheerful self. She saw the panicked look on my face as well. She explained that Ty was struggling to breathe. He had gotten considerably worse over the last 2 hours. She’d called our ENT doctor who was on his way but Ty’s condition had become an emergent situation. He was not getting oxygen into his system. They drew blood to test his oxygen and CO2 levels. This was the 7th time Ty had faced death. Because he did not yet automatically breathe through his mouth when he couldn’t through his nose, he felt as though he was suffocating. The ENT doctor had ordered that a ventilation tube be inserted in Ty’s mouth to open his airway. My heart shattered.

I knew inserting the tube would be difficult to watch so I went to the room where Ty and I were to spend our first night together while they worked. I knew I couldn’t watch helplessly while the nursing team hurt my son to help him. I tried not to cry while I called Rocky who was immediately on his way. I hung up with Rocky and tried to get myself together. I looked out the window. There were no windows anywhere else in the NICU, but there was one in this room. It overlooked the courtyard below. Ash fell through the air like snow. It looked like I felt. Devastated. Broken.

They came and got me when they were done. I held Ty for over an hour as we waited for the doctor, watching him struggle to breathe. The tube was a little larger than the one he had the day he was born. And he hated it. It hurt and gagged him. He did everything he could to get it out. And he fought and he cried. Only to give in and accept defeat. I cried with him. Not only was he struggling to breathe, but he was struggling because he was hungry and he couldn’t eat.

The doctor arrived and said that he needed to insert stents in Ty’s nose so that he had an airway. Then we could take the vent tube out. The problem with inserting stents was that they would have to do it with him awake. I hated the thought of inserting the stents, but I also hated that he had the tube in his mouth. How did he close up in 5 days?! I was so glad the girls were not with me. They didn’t need to see him like this, or what he was about to go through.

Rocky had arrived and we went to our little room because again, I knew I couldn’t watch what the doctor was going to do to Ty. I sobbed. I could hear Ty screaming. I cried harder. I didn’t know how many times I could do this.

The doctor came and talked to us when he was done. He would schedule the surgery for probably Thursday morning, two days from now. He said that Ty’s nose had closed up again, quickly, and he wanted to scope and take pictures to see if he could find out why. Ty would have stents in for a month and would probably go home with them. He asked if I had suctioned the stents yet and I said no. He asked why and I said that we all thought that Ty would go home without them and we didn’t think I needed to learn but I said that I would start.

We then went out to see Ty who was in a lot of obvious pain. Our nurse was visibly shaken. She had gotten so close to Ty that it hurt her deeply as well to watch what he was going through. The insertion of the emergency stents was traumatic for her as well. She was getting him ready for his feed and had Tylenol set up for him to take during his feeding. I held him while he took his gavage. He would cry out then sleep periodically, definitely in pain. When he finally slept, we laid him in his bed and left, exhausted.

I called to check on him later that night before going to bed and they said they’d given him a dose of morphine to make him comfortable. They said he was sleeping well and they planned to disrupt him as little as possible so he could sleep.

I think I would have cried myself to sleep if I had any emotional energy left in me. I prayed for Ty as I drifted off.

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