Final Chapter (Part 4)

The day after Ariella was intubated her chest x-ray looked better and they started slowly weaning the volume of oxygen. Respiration rate and heart rate were good and Ariella was communicating by writing. But kidneys and liver were looking worse again. There was always something. But initially she was handling everything ok. She had her nails painted by a nurse, played games, and was pretty alert most of the time. She was getting out of bed with PT and strung some beads with OT. We were scared but also optimistic. But as time went on Ariella became consumed with just wanting a glass of milk, water, or Rita’s Italian ice. That pretty much consumed her thoughts. Imagine just wanting a drink and not being able to have one. She cried frequently over that. It was unbearable to see her cry and not be able to help her. And it was next to impossible to hug or or hold her with all the tubes and machines. I tried laying in bed with her but was told I couldn’t when she was intubated. I should have fought harder to be allowed to stay in the bed.

The days in the hospital somehow continued to pass. We tried to engage Ariella in activities when we could, like bingo, but her anxiety increased exponentially. She would have a good day, even up and walking with PT but then she would require more oxygen support. Every time they tried to wean Ariella would get blood in her breathing tube and they would have to increase the support again. But they would have to increase it to even more pressure than when before they started weaning so she was taking big steps backwards. They took her to get a CT scan which really didn’t have many answers and when she came back we had the most terrifying experience thus far. The nurses were trying to suction her tube and it wouldn’t go down. Her oxygen levels quickly dropped and she wasn’t getting air into her lungs. They called a code and at the time I couldn’t imagine anything more frightening than every available doctor and nurse racing to your child’s room. She had a clot stuck in her tube which they managed to clear but that moment broke me. From that point on my hope quickly faded and I could not stop imagining the worst. When Ariella woke up I told her she took 10 years off my life and she laughed. She had no idea what had happened.

Ariella continued to beg and beg for drinks. Since she couldn’t have that she sat with wet towels on her head and bags of ice along her legs, saying that helped to refresh her. And then a nurse dipped a mouth swab into a melted popsicle and swabbed Ariella’s mouth with it and she was then Ariella’s favorite person. We happened to have a large tub of Rita’s as well so we dipped swabs into that as well. Ariella was so happy. How heartbreaking is that? She was having such a terrible time that a tiny taste of a popsicle cheered her up. She also got some milk through her NG tube and a taste of milk on a swab. She wrote that her spirits were no longer crushed because she was able to have those tastes and also milk and water through her NG tube. Read that again. Her spirits were no longer crushed. How devastating. How horrific to know your 11-year-old child’s spirits were crushed. Ariella, the most optimistic and fearless person I knew had her spirits crushed.

Sitting in the PICU all you do is stare at the monitors and listen to the beeps. We would constantly watch the oxygen levels and to see if she held her sats if a change was made to her vent setting. And during all this time there was some stability, some improvement, and some worsening. But mostly worsening. Again they started to wean the vent and again she began coughing up blood. And again the settings went back even higher than when they first started weaning. And because Ariella never did things the easy way she picked up 2 more infections.

By the end of March Ariella was absolutely miserable. She stopped communicating, wouldn’t engage in any activities, wouldn’t do much of anything including watching TV or letting me read to her. I missed the sound of her voice so much. I would have given anything to hear her talk, yell, laugh, anything. And to feel her arms around me. After being in the PICU for over 3 weeks and on the vent for over 2 weeks we didn’t seem to be any closer to extubation.