Of course, another surgery set her back again. She was still on the ventilator. And they were hoping to wean her, but her lungs were not good. She had lots of secretions, and they didn't want to pull the vent out until they knew her lungs would be alright. It was a horrible time. Ashley had grown so weak. And she was unhappy every day. She cried lots and lots. I couldn't hold her very well. The one big blessing that I remembered, was the wonderful Child Life specialists who went above and beyond to keep Ashley as happy as possible. We also had a dear nurse during this time who became Ashley's nurse whenever she worked in the PICU. Her name was Judy, and I always knew when Judy was there, Ashley would be alright.
Well, shortly after that surgery, Ashley's heart rate began to plummet. It would fall very low, and since they had pulled out her external pacing wires, they had nothing to help keep her heart rate where it was supposed to be, short of medicine. They did start her on a medicine to keep her heart rate up. It made her super jittery. I can't remember the name of it now, but it made her feel awful. They had to take her into surgery again the following day to implant a pacemaker. That happened on the 4th of May, 1999. She did well in that surgery, but we still had the fight with the vent. Her lungs were wet and the chest x-rays looked murky. I don't think I ever prayed harder that I did at that time for her to get off the vent. Finally, they decided to try to wean her. The night before, my uncle came into the PICU and gave her a blessing. I prayed all night long it would finally work. The Lord heard our prayers. They were able to get her off the vent!! But, then a whole set of new problems surfaced. First of all, her swallow was messed up. Everything she drank went straight into her lungs. Second, she couldn't talk. They were worried her vocal chords were ruined for life. They had to scope her vocal chords and throat to see what damage was done. She was also so weak, she was unable to sit without help. She could barely hold things in her hands. She couldn't stand or walk at all. I couldn't believe how much she had lost over the previous month and a half. We had to start her on both physical and occupational therapy. They had to put her on C-Pap, to keep her lungs open. The respitory therapists had to come bang on her chest three times a day to help keep the secretions cleared. She had a feeding tube, but was unable to eat or drink anything by mouth, which was hard. She was so thirsty, as you can imagine. She would cry for water, but we couldn't give her any. She also had trouble with one of her eyes looking droopy. We had to get a cat scan done to make sure she hadn't had a stroke. The problem never did go away before she was discharged from the hospital.
Finally, almost two months from her first open heart surgery, she was released from the hospital. They actually sent her home before most of the doctors thought she was ready. The only reason they let her go was because she was so depressed. They were worried if she stayed any longer, she might get sicker, and not better. I had been at her bedside every day, morning and night, for the entire time. I had learned everything I needed to know to care for her at home, and they knew I was competant and reliable to do what was needed.
So nearly a month before her second birthday, we got to take our angel home. And you know what she ate the whole way home: ICE CHIPS!! No joke! Once they let her have ice, she went nuts!! That was her favorite thing for the month following her release. She was very weak, and sick still, but she was alive, and in her own home. It was truly a miracle!!
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