Day 17, March 16, 2013 Saturday
Tess had stayed with Amy that night. She slept well, but at 6:15 three vials of blood were taken and at 6:30 a surgical doctor came in and pushed all around her stomach and kidneys. 8:00 x-rays were taken of her stomach/kidneys and her chest. The nurses were in to check and flushed her feeding tube and hooked up a new one. Then her ventilator was removed from the room! It was not needed anymore! Success!
The Dr. from ICU came in at 10:30 and told Tess that everything looked good. Amy's trache would be downsized, a speech valve would be put in, and her oxygen would be decreased. (To my understanding, even though a person has no speech, a speech valve can be used to be able to control the amount of oxygen a person is using.)
Amy managed to sleep on and off through that whole morning. Around noon she was bathed and gotten into her chair. Bill and I came and Tess left. Amy's floor doctor came in and said that everything looked good. Respiratory techs were in and told me that it would be many days even weeks until she was off the trache! Later the floor nurse told me that Amy would be able to go home without the trache and feeding tube if her swallowing test went well on Monday. The rest of the day was good but toward evening, Amy seemed flushed and sweaty and her heart rate was still high. About an hour and a half later a nurse finally came in and checked her vitals and all seemed fine. She just thought that her body was working extra hard because of being off the ventilator. Then Amy woke up and started smiling! All she had been through and she could still smile. Bless her! We had a good evening, read some chapters in her book, watched some Veggie Tales, called Daddy for bedtime prayers and listened to music as she fell asleep.
3 a.m. Amy's bed was wet again, so I changed and repositioned her and we were able to go back to sleep.
8 a.m. Again the bed was wet and cold, I didn't understand why I couldn't just put diapers on her. The catheter was always leaking.
At 11:00 her i.v. port was taken out. Another good sign. The Dr. was in and said her catheter could be removed and her trache would be downsized. When? That was what he told me before! I guess because it was a Sunday, the proper drs. weren't there. The catheter was removed and Amy was set up in her wheelchair. We had some visitors and then Tess came so I could go home. While I was gone the floor doctor came in and said he would be gone for a few days so someone new would be in for him. Even though Tess read to Amy, watched t.v. and listened to music, they both didn't sleep well.
Amy seemed agitated, wanting to scratch her nose and bite on her hands. Her oxygen rate went down and her respiratory rate went up. Blood was taken, she was still congested and upset. Tess tried to calm her and finally she calmed and started watching "I Love Lucy"
8:00 For the swallowing test Amy was transferred to a small bed and wheeled downstairs and then transferred to another bed. She was all set up for the test in the chair and was given one bite of applesauce. She aspirated right away, so they stopped the test and brought her back upstairs. They suctioned as much out of her lungs as they could. It was mostly the applesauce.
The PA came in and talked about a PEG tube. This is a tube going into her side right into her stomach. She could still go home with that in and have periodic swallowing tests to see if she could swallow her food instead of aspirating it.
The trache Dr. was in and he needed to consult about a smaller tube first before he did it.
It would just take more time!
Another PA was in and talked about working with the equipment at home for the trache and PEG tube.
Skin specialists were in and said that Amy's sore on her tailbone was healing nicely.
Bill, Emily and I came around noon and Tess left. It had been a stressful morning.
Amy's ICU Dr. was in and he downsized her trache to a 4, the smallest.
Amy saw so many different doctors while she was in the hospital. But her first Dr., the ICU Dr., did more for us than all the rest combined. He also had compassion and was truly trying to help us get Amy home. He was too optimistic, though. I wish, just once, he would have told us the worst that could happen...... that Amy might die.
We consulted with Home Health services and found out that we could care for a trache and a PEG tube at home.
Amy was up in her wheelchair for about 2 hours that afternoon. She did great. Emily and Bill left for home and Amy soon went to sleep. She had had a long, trying day.
I will always have doubts. What if I had stayed Sunday night and was there for the test Monday morning? Could I have calmed her down? Did the applesauce taste gross and she tried to spit it out? Was she sitting properly and not uncomfortable? Those are questions I asked myself then and still ask myself now. But it wouldn't have changed God's plan for her life. Our days are numbered. I really believe that. And it was her time to leave this earth.
Emily updated our friends that night.
"This is Emily, updating for Mom: Amy failed her food test. Please pray for the decisions that need to be made in the upcoming days. She did get a smaller trache put in today and is still breathing well. Thank you all for the continued prayers."
My sister sent this to me last Sunday on Amy's birthday. It sums up exactly what I feel.
“Do not judge the bereaved mother.
She comes in many forms.
She is breathing, but she is dying.
She may look young, but inside she has become ancient.
She smiles, but her heart sobs.
She walks, she talks, she cooks, she cleans, she works,
she IS, but she IS NOT, all at once.
She is here, but part of her is elsewhere for eternity.”