I am still at home. I planned on visiting my girl today, but the nurse advised it was better to stay away and that I couldn’t touch her if I came up, so I stayed back. I think it would have upset her to have me in the same room but be unable to touch her. I am praying that I wake up tomorrow symptom-free!
She is having more withdrawal symptoms: agitation, restlessness, inability to sleep, but that is to be expected as her body to adjusts. She otherwise seems content and is improving each day. She will speak if you ask her to repeat after you, but otherwise it seems like her throat bothers her too much talk and she doesn’t have much of a voice when she does from the vent being in her throat for so long.
Our oncologist said that her breathing pattern is back to normal, it’s just labored and is most likely a result of her swollen tummy (yes, still dealing with that tummy) and her congestion. We have been concerned about her stomach issues from the get-go because Phoebe’s main complaint in the weeks before she was diagnosed with the tumor was her tummy pain. About a week after her brain surgery, her abdomen started bloating and it has continued to do so off and on, causing her to take shallow breaths which in turn caused a partial lung collapse. Now we are still dealing with this stubborn issue and are hoping to get some answers.
We will have a meeting on Thursday with the ICU team and Phoebe’s Oncology team to discuss her transition back to the Oncology floor. Her doctor has mentioned that we will be able to take Phoebe home for a bit after she gets more stable and I get giddy just imagining her here in our home! Today in the car Deacon said “Why do I always have to sit back here alone?”. His older brothers were paired up in the front seat and it’s not always that way, but it reminded me how much Deacon’s life has changed in the past 2 months. He and Phoebe were the dynamic duo and I know he misses his playmate.
Tonight at dinner Deacon offered the prayer; “Dear God, please help Phoebe have a good day and be good and please touch her.” It was so sweet. Nathan said he thinks Deacon’s prayer life is almost entirely devoted to Phoebe. He misses her so, and I miss her for him. I know when she comes home the boys are going to be climbing over each other to play with her and show her her room and all the beautiful blankets and toys that people have sent to her.
I can’t even imagine bringing her home! I hate seeing her unused car seat in the garage every time we pull up to the house, and the empty seat in our van. What an incredible feeling it will be to have all four of my babies in the car at one time! I have so much expectation it makes me nervous to hope she can come home because I don’t want to feel let down again. BUT, I will not fear bad news! God has taken good care of her and I am so grateful that I am writing about Phoebe coming home, instead of sepsis on this blog tonight!
We have MUCH to be thankful for! Thank you for your prayers and posts these past few days, sometimes they reduce me to tears the words hit home so well.