So Heavy
On November 28, 2018 by Michelle LoveI’ve been feeling very weighed down lately… just feels like I’m carrying the weight of a thousand worlds sometimes. Then I read something I wrote, like this from three years ago and, I feel a wave of panic wash over me. I’m right back there by his side, watching him suffer, holding his hand, mustering up every bit of courage and faith I have to smile.
I love you BJ and I’ll never stop being your voice.
Post from November 27, 2015….
Friday (Day 22 from CART cell infusion) … Two weeks inpatient at Duke. BJ was started on a small dose Risperdal to bring him out of the delirium, calm his breathing down from a respiratory rate of upper 50s, and slow his heart rate down from reaching 200 bpm. His oxygen saturation started dropping. He had been doing fine for over 24 hours without any additional oxygen. He was put back on a nasal cannula, and to get him back into the 90s, the oxygen was incrementally increased to 6 liters. A chest x-ray and ECG was ordered. The ECG was normal, and the chest x-ray showed some fluid in his lungs again. He continued to need 6 liters of oxygen until the dose of Lasix started working. During the day today, he was weaned down to 4 liters currently. They will continue to wean him down as long as his sats stay above 92. He was put on a cooling blanket this morning, to help lower his temperature, since the IV Tylenol takes a while to make a difference. That has helped him throughout the day, and he did not get up to 106.
This evening, he has been uttering words, and more of it was making sense. He’s still not speaking clearly, but I can discern a few of the things he says. His room here is a very light blue, and at one point today, he was trying to raise up off the bed. He thought that he was in Carly’s room, and his intention was to go to his room. (He isn’t allowed to get up by himself, for risk of falling.) A few minutes later, he knew he was in the hospital. Later on, he said ‘cracker’ so we got him a cracker. He tried to eat it, but then didn’t want it. His taste buds are damaged right now, as his mouth got in really bad shape with dryness over the past week. He has had dried blood for several days in the crevasses in his teeth, and clots all inside his mouth from either it cracking open or him biting his tongue or cheek. His platelet count has stayed very low, even with transfusions, so he is at risk for bleeding. I asked him if he wanted some ice cream. He shook his head yes, so I went to the cafeteria and got some. He ate three small spoonfuls. This is progress. He hasn’t eaten anything in 2 weeks.
He had another port issue today. Somehow, the cap came off of his IV line, disconnecting the platelet infusion. There is a high risk of infection with central lines so there are lots of precautions taken. Once again, he had to be de-accessed, site cleaned, and accessed with a new .75″ port access needle. The picture below is a section of the September CT scan of his lungs done while his port was accessed. He thought it was cool the way you can see the port and the needle in his chest wall.
The research lab results from Days 12-14 came back today. BJ’s doctor finally got his tangible proof that the CART cells were working. He did acknowledge several days ago, with BJ’s extreme drop of white blood cell counts, that the treatment was working. His WBC count today is 0.1. We have so much to be thankful for!
Praying for continued mental clarity, lower temperatures, vitals in normal range. Thank you all for your prayers!!
#CureForBJRound2 #BJStrong#Fighter#FutureNavySEAL
#CART19#BuhByeLeukemia — at Duke University Hospital.
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