The nurse came out of Allistaire’s room yesterday saying she was awake from her nap and that she had played with all the buttons on the IV pole and then somehow partially disconnected her tubing so that blood had begun to leak out. Thankfully it was only a very small amount compared to the pool of blood from months ago. She said that the blood had backed up in the line but that fortunately it hadn’t clotted off. At midnight Allistaire called out to me from her crib. I went to check and saw that the IV pump said “emergency stop.” I called the nurse who came in to discover that Allistaire had attempted to pull the tubing cartridges out of the IV pump and turned on the other unused med pump. At 5am this morning she called out to me again. This time her line had completely disconnected, though probably on accident from all of her turning in her sleep. The bag of TPN had to be discarded because of potential contamination. They only make TPN once a day so for now she is on saline and will be getting electrolytes until this evening when she can have a new bag of TPN. Several other times the IV pump alarmed in the night because of “distal occlusion, ” my most hated of all the alarm sounds as it gets louder and more obnoxious if you don’t attend to it soon. This just means there’s a kink in the line somewhere, but it wakes you up regardless even if the solution takes 10 seconds. Can I just say I am SO ready to have Allistaire disconnected from these tubes forever!
On Friday Allistaire and I were escorted off of the Unit to go to the Cardiology Unit for her to have the Echocardiogram and EKG. We were also escorted back and when the nurse badged in through the double doors, Allistaire began to scream and refuse to walk any further. When I picked her up, she flailed her hands, hitting me in the face and screaming all the more. She was apparently extremely unhappy about having to go back in. I had no idea she was even aware of what going in those doors means for her. It hurt my heart and I tried to reassure her that it wouldn’t be too much longer before we can go. Last night as we were waiting for new tubing to be hooked up, I urged Allistaire to drink her milk. She had no interest. I told her that she had to drink her milk so that we could go Bye Bye home and be all done with her tubies. She looked at me imploringly and asked, “Bye bye soon?” “Home?” “Yes, sweet girl, bye bye home soon,” I responded with aching heart. She raised the sippy cup to her mouth and downed the whole thing in a few short minutes. Then she began to push back the blankets and sit up, thinking now was the time to go.
This morning Allistaire’s ANC is 222, just above the hallowed number of 200. While she was completely taken off her morphine yesterday, she is still supposed to be on 16 hours of TPN as of today. I’m hoping in rounds today to find out how many more days to ween off of TPN. I don’t know what their expectations are for her eating. She still isn’t eating a lot but she had several jars of baby food yesterday and actually joyfully fed herself one in the evening after a bit of prompting. Also, now that her ANC is over 200, I anticipate they will take her off the antibiotics. Yesterday evening was really joy upon joy. Once the nurse had Allistaire all cleaned up from her nap she released her down the hall to me where I was talking with some folks by the front desk. Because she was off morphine and only had 20 hours of TPN, it meant that she had 4 sweet hours of complete freedom. Allistaire ran to me, unfettered, down the hall and I nearly burst into tears as I swept her up, seeing that my little beloved, gleeful Allistaire was returning to me. She played nonstop from 5:30 to 7:50 when I decided I had to have her stop to try and get some food in her before bed. She had an absolutely delightful time playing with crazy cat Piper and Chris’s little sister Alexa who was especially sweet with her. Chris is a 22 year old hokey player who was told he couldn’t go back on the ice until he went to the doctor. He didn’t even think he was sick but it turned out that he too has AML. We visited with Ruby who is nearly 18 and discussed the possibility of putting on some sort of prom on the Unit since she will be missing hers at school. It was a lovely evening and fun to be out of the room and hanging out with so many people we love. Our little posse that was cruising the halls actually got shooshed a few times by a bit of a sensative nurse. I felt like saying back that shouldn’t we instead be all the louder for were we not declaring the victory of life over that which has sought to drag us all down. Truly, had there been a grassy field, I might have started skipping and scattering flowers.
Father God, Master of the heavens and the earth, you have been SO good to us. You have provided abundantly for us at so very many points. I sit here on a stormy spring morning, the gray clouds rushing by and the sweet brilliant green of new life clinging to trees and bushes everywhere contrasted against the dark sky. I wish I could boast that we are done with this forever and ever, but this is not promised me. But the life of my child has been extended and I have been transformed. New life has sprung up in me. Father, you brutal God who is willing to count high costs for life, true life, abundant life, eternal life. You who sacrificed the life of your own son, knowing it would bring about not only His resurrection from the dead but hope for all of us that we too might not be defeated by death but rise up and taste the sweet richness of a life lived with you both here and now and forevermore.