Phoebe has had an emotional day and and so have I. Benjamin came down with fever and vomiting yesterday and then I started getting sick and when I woke up this morning, my throat was swollen, I had no voice and my face felt like it was going to explode. So, I didn’t get to see my girl today and from what I hear she had some weepy spells which in turn made me have some weepy spells not being able to do anything for her. We are a mess.
Ben is feeling better today and Nathan and I are battling this nasty cold or whatever it is. Phoebe has also had a fever today and they are taking more cultures. So far all of her cultures have come back clean, leading them to believe that she is still having some central fever.
Her chest and lungs have been very congested and she has not been able to cough it up the way she needs to because her muscle tone is out of shape and her lung capacity so diminished. They had her sitting up in her physical therapy chair for several hours today in hopes that being more upright would enable her to breathe more deeply and strengthen her lungs.
She is still having a lot of withdrawal symptoms and the weepy spells are all a part of that. She has mouthed “yes” and “no” but still doesn’t have a voice because of the irritation from the ventilator. She also turned the pages on her Grammy’s Nook book tonight to look at a story and that is encouraging.
To be quite honest, one of the doctors in the ICU came into her room a couple of hours after they removed the ventilator, assessed her while she was breathing erratically and her eyes were half mast and distant and stated that he thought the tumor was causing her to be like that and maybe this was her “new normal”. I flipped out. His comments have been the cause of a lot of tears these past 2 days and even though he recanted what he said after he assessed her again later and realized that she had a clear MRI ten days ago, it has left me shaken.
They are now saying that everything she is experiencing is from being on opiate pain killers and sedatives for an extended period of time and having withdrawals. She recognized her brothers today in a picture and whispered their names, so I know she is “there” and that the doctor was off in his assessment, but there is always the underlying fear of the tumor and his words planted a seed that I’ve been trying to dig up for the past 2 days.
I am praying that I wake up feeling better tomorrow. I am so afraid to get her sick on top of all her struggles right now, and yet she needs me and that feels horrible. If her groggy state continues she will have an MRI on Mon or Tues. They are expecting to see her wake up and become more interactive as these drugs leave her system although it will be some time still before she is weaned from the methadone altogether. The other important issue, is that she will start coughing for herself and controlling the secretions in her lungs so that her breathing can become clear and steady. If she clears up her breathing we will get to move back down to the Oncology floor on Tuesday.
Please pray for all the things I mentioned above and for our family to get well so that I can return to my girl.