Day 283

“Mucosal desquamation.” That’s the name for what is happening inside Benjamin’s body due to Methotrexate-induced Stevens Johnson Syndrome. His lips, mouth, tongue, throat and belly are all sloughing internally and he is working hard to rid his body of its former lining. It’s making him very uncomfortable, but we are using his outer skin as a motivator. It is almost finished with its exfoliation. Soon, all of this internal shedding will be finished as well.

Last night was a rather sleepless one. The blood in Benji’s vomit prompted us to move forward with a platelet transfusion at 2am. Neither of us slept until that was over. The nurses on the floor seemed tired too. At one point the nurse brought in a medicine to hang on Benji’s IV pole, and I noticed the name of the girl next door on the syringe. I know she would have realized her mistake when she went to scan Benji’s bracelet, but I was still thankful to have been awake to keep vigil.

Our nurse also forgot to prepare fresh saline ¬†for Benji’s morning blood draw, and the taste of the predrawn stuff woke him up quite unpleasantly. His tongue was burning also. It was hard to get back to sleep.

Good reports came during the nurses’ shift change: all of yesterday’s blood and stool cultures were negative. Benji’s platelet transfusion was quite effective, giving him a level of 49,000 prior to today’s dressing change. His creatinine level is finally below one at 0.89, which means his kidneys are functioning at 66% capacity. This is excellent news.

Benji’s resurgent tummy pain prompted a visit from the GI team today. They suggested a fourth medicine to coat his stomach. I am hesitant. I want him to be comfortable, but I don’t know that these medicines are helping. I don’t know that anything will help until this horrible “desquamation” process is over, and I’m ready to start seeing bags be removed from the pole, not added to it.

Benji was due to have his port deaccessed and reaccessed today. I was concerned about the tender skin under his dressing, but it looked great and had healed nicely. Michael and Banyan arrived just as Benji was being deaccessed. He was free of tubes and medicines for a full hour, and he spent the first half of it in an oatmeal bath, cleaning his tender chest and enjoying the buoyant water.

Kathy and Gana brought us a home cooked lunch. They prepared several bland complex carbohydrates, per our doctor’s suggestion for first foods; rice, pasta, mashed potatoes, sweet potatoes, all with little to no salt or butter. Michael had the same idea and made his boy some grits as well. We put a little bite of everything on a plate for Benji. He wanted it to work, I could tell; but his burning tongue prevented it. The failed attempt made him sad. This kid is trying so damn hard to do everything right.

The nurses came in to reaccess Benji after his hour of freedom. His numbing cream had shifted a little, and as a result the needle piercing his skin caused more pain than usual. Still, his attitude was amazing, and the nurses were quite impressed. I’m glad that some of his family was here to bear witness to his bravery.

Benji was very tired after such a busy morning. Kathy and Gana said goodbye, and Michael insisted I take a nap while Benji slept. I’m so glad I did. Benji’s fever had risen a little during his rest. I woke up, took a hot shower and recollected myself.

It was really nice to have Banyan here with us today, watching football, reading, being silly. We played cards while Benji finished his nap. Our game was interrupted when Benji woke up, and Banyan didn’t complain a bit. He kept thinking of little ways to try and make his brother happy, and persisted whether or not his efforts worked. I continue to be deeply thankful for the grace and understanding my big guy just seems to innately have about this crazy situation.

I have several questions for the Monday team tomorrow. The biggest one is about this new wet cough that has persisted the last two nights. There are mucosal linings in bronchial membranes; what if Benji’s are sloughing like the rest of his mucosa? What kind of tests could we do to find that out, considering his neutropenia? How can we keep his lungs safe? I will feel better after requesting a pulmonologist consult tomorrow.

I am grateful for Dr. Grana’s Friday optimism, but I see no exit for us from the seventh floor any time in the next few days, and that’s just fine with me. I want more than anything for us to be home, enjoying the glorious transition to fall, playing in the street with our neighbors at twilight. But there are questions unanswered and systems unrestored. We can be patient in the name of perfect healing. As sweet new baby soft skin starts to appear on the outside of Benji’s body, I envision it forming on the inside, creating a soft, healthy lining of perfect new cells.

2 thoughts on “Day 283

  1. I’m sorry that your home coming looks like it will be pushed back a bit. I know you are right in feeling that your best place right now is in the hospital but your home coming will be so wonderful when it takes place. Nothing feels as good as your own home.

  2. I always enjoy seeing Benji across the school yard or cafeteria with energy in his step. Missing these happy Benji sightings prompted me to check in here for an update. Words can’t express how very sad it is to read and see that he/you all are going through this extremely difficult time. His bravery is beyond amazing and his determination is absolutely incredible!! Your love, support and attention to all things that really matter is stunning — as is your ability to find and focus on the bright side while being the most wonderful, informed advocate and care giver for Benji. I will continue to check in and know that soon your entries will show that this difficult time has led to healing, progress and the comforts of home. Gosh–to balance the level of emotion with the understanding that the school’s habitat garden is being restored by your husband’s generosity when so much is going on, is surreal. There are no words suitable for the awe I have for each of you (including Banyan’s big brother/unconditional love!). Benji, hang in there sweetheart. You are very much in and will continue to be in our thoughts and prayers. Godspeed. Maria (Ryan’s mom)

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