Things were really starting to look up. Every once of fluid that knowingly goes into Allistaire gets counted, which means that every once that comes out does as well. They refer to these as “I”s and “O”s in rounds. On Monday Allistaire’s output was 1800 (unknown unit), and on Tuesday it was 600. What joy it is to report that Allistaire’s last time throwing up was over two days ago and she has only had one poopy diaper yesterday and one today. Who can believe it?! Her little bunzers are really looking so much better. Granted I used an entire tube of EPC (Extra Protective Cream) in one and a half days and I’m using some sort of fancy expensive wipes that also leave a protective barrier. My heart was feeling lighter.
Then…one of the bone marrow doctors asked me about Allistaire’s little booster seat with tray combo that we use as her eating chair. He and his wife are expecting and he’s on the hunt for good baby gear. This little chair, while made of a hunk of plastic, is never the less one of the best 30 bucks I’ve ever spent. I then channeled Vanna White and showed off all the fabulous features of the chair including the handy way it all folds up and has a convenient strap to carry it over your shoulder. Dr. Brothers seemed duly impressed and the morning progressed nicely. It was time for Allistaire to eat and so I began to buckle her into the chair. In her two-year old insistence that “me do,” I allowed her to attempt the second buckle while I chatted with the nurse. In her frustration that she couldn’t get the two ends of the buckle to line up properly, she began to angrily cry out and wave her arms in the air. Before we knew it, Allistaire, locked into the booster seat by the one buckle, went careening forward straight onto the floor off of the big chair. In my zeal for demonstrating the fine features of the booster seat, I had forgotten/failed to reattach it with the straps to the chair. I swooped her up and took in the sight as I attempted to wipe away the blood. Busted front lip from where her top teeth punctured through, bloody nose, and a few impact bruises where her nose had been snubbed upwards. Immediately the resident doctor was called and planned to order platelets right away to help the blood clot (they expected she was a day or two away from needing them). Fortunately in a few minutes Allistaire stopped crying and the blood stopped dripping and she actually went on to eat a few jars of baby food just a short time later. Of course I hated seeing Allistaire hurt but to be honest I mostly hated that I was the source of her hurt. I had failed to secure the chair and now she had an open wound with no white blood cells to combat whatever might come in to harm her.
The doctors came a bit later and examined her. Dr.Fong kept looking up at the corner of the far wall with a flat expression. It seems he was pondering the possibilities of her fall. “She could have fractured her nose,” he said. I asked what we would do about a fracture and he said that there would be nothing we could do. I said that it seemed an unnecessary risk to have Allistaire sedated to have a CT scan just to know something we couldn’t do anything about. Then he suggested that a fracture higher up in her nose could have punctured something-a-rather and brain juice might start leaking out. Okay, so he actually said something about a CSF leak which I had clarified is a leaking of the cerebrospinal fluid that surrounds the brain. All I could hear is that in my stupidity my child’s brain goo could leak out of her nose. Suddenly the tables had turned and instead of being the mom caring for my sick child, I was the mom that had potentially severely harmed my child. I felt wretched. Dr. Fong felt up and down Allistaire’s nose and she indicated no pain which gave him confidence that her nose was probably intact. They said they would keep an eye on her and we would go from there. I was to keep a look out for clear fluid coming out of her nose.
The rest of the day was fine, other than the constant mental bashing I gave myself for being so careless. Child dies not from cancer but from dumb mom – that’s all I could think. By 9pm I had finally put Allistaire to bed and rushed home to complete last-minute cleaning and plant watering for our house to be put up for sale today. By 12:15am I was back at the hospital in time for Allistaire’s vitals which she was extremely fussy about. The nurse told me that Allistaire had felt warm but that so far she didn’t have a temperature. By almost 1 am I finally laid down to sleep. Then for the next five hours I awoke over and over and over. Allistaire was crying so I would get up to check on her but she was still completely asleep. I wandered around outside her room looking for the nurse to discuss what might be going on. Her temperature had started to climb and so it had to be checked every 30 minutes. Then it went down but she still cried in her sleep. We discussed pain meds and how to deal with possible nausea and thus likely throwing up. Then her temperature started to climb again. Just as the benedryl/Reglan infusion was getting underway, Allistaire spiked a fever. Blood was taken for labs so that they can see what will grow in the blood cultures. A general antibiotic, cephapine, began its infusion. Vitals were taken over and over and because Allistaire was so upset and fussy, I had to help with blood pressures and getting her to take the Tylenol. She finally fell asleep in my arms as I held her in the crib. The light was creeping in under and around the blackout blinds and the clock read 6 am.
I decided to forgo my usual routine of getting up at 6:45 to shower and thought sleep was more important. At 8:30 I awoke to the loud metal bang of the crib rail crashing down. Another float nurse I thought. Someone who isn’t familiar with taking care of kids on this unit. The was confirmed moments later when I left the room to check in with the nurse before I got ready for the day. Allistaire cried out in her room and I rushed to find her and the bed soaking wet. The nurse was not familiar with sippy cups either and had not inserted the stopper so that milk simply dumped out. I got Allistaire situated and back to sleep and I went upstairs to the fifth floor to shower in one of the four showers shared by all the in-patient parents. When I returned to get Allistaire up for the morning she was receiving an infusion of the antibiotic, vancomycin. The rest of her morning consisted of me holding her in my arms while we spent an hour and a half of me slowly giving her one bite after another of two jars of baby food. 150 calories. The doctors rounded. The blood cultures were negative (showing nothing growing) so far but they decided to change the second antibiotic to clindamycin because it would both fight the bacteria she had fought previously in her second chemo round and the bacteria that could be found in her mouth that could get in through her lip. I expressed my fear that the fever was caused by bacteria from her lip which I was responsible for. Dr. Fong reminded me that he told me a few days ago that he wouldn’t be surprised if she got a fever in the next couple of days. I said that I wasn’t happy when he told me this originally but now I would hope to allow it to ease my conscience a bit. At 2pm she went down for a nap but by 4 she was already up and spiking a fever again. She wouldn’t let the nurse give her the Tylenol so I rushed back from having lunch to assist. We once more had her settled and this time it was the two of us laying face to face with our heads on the pillow of my pulled out bed, me rubbing her back. An hour later her fever was down to a normal temperature and she was suddenly eager to ride the bikes. For about 45 minutes she rode a few of the bikes around the unit, timidly at first but then with much vigor as she would push herself with great speed and then glide. At 6:30 was bath time and so we paused to cover the end of her tubes with parafilm and cover her lines with three precisely placed pieces of Reynolds Press’n’Seal. About midway into her bath, she became very quiet and mostly still. Her energies must have waned. By 7pm all she desperately wanted was to go to sleep but we had two jars of babyhood to plow through. By 8:45 she was in bed, vitals done, meds administered, and back rubbed. I met my friend, Cambria, who had come to visit and we enjoyed catching up while I ate an extraordinarily tasty salad with grilled salmon my friend, Katy, brought. We topped off the evening with some ice cream and brownies that Cambria brought. Stephen, a sweet Starbucks employee, brought over a cup with chocolate syrup and a cup with whip cream to add to our dessert.
That was tedious wasn’t it. Probably got sick of reading the details. I know, I got tired writing them. But you know what? Our hardest days have been the norm for many, many people here that I live with. This is their constant reality. This is there baseline. The realm of possibilities stretch out far and wide. We just heard a few days ago that there was another death on the unit. This time a five-year old girl. I learned this news while the staff rushed around caring for a Code Blue, two doors, 10 feet, from our room. This is a battle; a wearying battle. The points of vulnerability are abundant. I overheard, Sonia, one of the sweet, cheerful ladies who cleans our rooms for us, telling my mom that she prays especially for the parents. “The kids get medicine for what’s ailing them,” she said, “there is no medicine for the parents.” There are layers and layers and great depths of battle in this place. In this building, there are housed the stories of so many beings, so many spirits. In this place, confined by walls, constant beeping and contraptions and vials and bags and syringes of medicine, there is wrestling that does not stop. The ventilation system in the building is a constant quiet roar that is silent until you stop to hear it’s whirring. The tumultuous battles of the heart roar silently and relentlessly behind the IV poles, and in darkened patient rooms, in the pacing phone calls, and the constant numbers that tell of so many parts of our flesh we can’t see with our eyes. I fight in the battle. I pray and pray and pray. I hear story upon story upon story. I review the names in my mind as I walk the halls, as I shower, as I drive, as I lay down to sleep and as I wake up. There are the faces in my mind. Sometimes I can only do as much as conjure them up before the Lord. I cry out and ask that He help them. Lord, be merciful. Father, be with them. Most high God, look down and act. Make your presence known. Show yourself. And He is and He does and it often looks like a wreck, like devastation. The cells of my flesh press and strain against my skin, demanding that the brokenness be done, that everything would be mended and made right.
I met a woman this week who is here with her 2 1/2-year-old granddaughter. Her granddaughter has a twin. This woman is responsible for both of them because their mom/her daughter died this past November. Their father is not in the picture. This woman’s fiancé died six days after her daughter did. She has an adult developmentally disabled daughter living with her at home for which she is also responsible. “If it weren’t for my faith,” she said, “I’d be a wreck.” Looks like a wreck and it is wreckage and brokenness and wretchedness – and somehow in the very midst of this the Lord is at work in her heart, sustaining her, breathing life into her. The Lords ways cannot be reviewed every morning in rounds by numbers and measurements and tests. But He is evidenced here none-the-less in countless stories, by so many voices.
It is 12:20am and I am worn out. I am frustrated once agin with failing to put finite words to the infinite, tangibles to something bigger than tangible. I met Jason and Rhonda two mornings ago. They were upstairs having breakfast in the Family Lounge, their Bible open on the table. Their six-day old daughter, Esther, almost didn’t make it the short couple mile drive from UW hospital where she was born to Children’s where she is being cared for. They spoke of knowing the extraordinary closeness of the Lord; His presence in a way they had never known before this past week. Their’s is yet another story of wreckage beautiful.
I’m so sorry Jai:(. You are a GREAT mom. I will be praying for Allistaire… And for you. I went to my Bbible to try and find a verse for you and came across 1 Peter 5:10-11. “And the God of all grace, who called you to His eternal glory in Christ, after you have suffered a little while, will Himself restore you and make you strong, firm and steadfast. To Him be the power forever and ever. Amen.”.
Oh Jai we are never tired of hearing the details. You are a great mom. I loved hearing your sweet girl telling you not to cry and she loves you. Love Auntie Lucy