***UPDATE***
It's 9pm and Dylan's temp has been 40.1 for 2 hours now. His Blood pressure is stable but he remains on dopamine, they have not attempted to turn the dopamine down since the last attempt earlier today. Dylan is surrounded by ice packs and Tylenol is doing nothing to reduce his fever. He is very miserable, has the shakes and blurred vision, but is still managing to protest about the ice packs. The cause of this septic shock remains unknown. This is very scary and I am getting more and more concerned.
What a night! I have not slept, so I hope this entry makes sense. Yesterday Dylan had his day 4 of chemo followed by vomiting, diarrhea and a blood transfusion. Dylan’s blood counts showed that he is not neutropenic. After 5 hours in clinic, Dylan spent a few hours downstairs in the playroom at Ronald McDonald House and at about 4pm he jumped into bed and fell asleep. Dylan woke at about 8pm, and happily played the laptop computer games while I watched television, but complained of minor leg/knee and left hand pain. By midnight I told Dylan to turn off the computer as it was time for us to get some sleep. Dylan turned off the computer and said he was cold, the next thing I knew he was shaking, so I took his temperature and it was 39.4 I rang Urgent Care at MSKCC and then we headed over at about 12:45am. When we arrived the nurse said that we may be lucky and get to go home after a dose of antibiotics. After the pediatric fellow on call arrived, and examined Dylan, the nurse said that chances were we would be admitted. After Tylenol, Dylan’s temperature did not cease. Blood cultures were taken and antibiotics ordered. Then Dylan’s blood pressure dropped dramatically. The doctor explained that he would be admitted to the POU (Pediatric Observation Unit) at MSKCC, which is sort of in-between ICU and a normal ward. By about 2:30am, I heard the doctor ring the pharmacy requesting the antibiotics a.s.a.p as Dylan was septic. Dr Kramer was paged as concerns for Dylan’s dropping blood pressure and constant high temperature grew. By 3am an ambulance was called and the doctor explained that Dylan was going across the road to the ICU at New York Presbyterian Hospital. Dylan’s TPN was ceased and he was given lots of fluid to try and raise his Blood pressure, but to no avail. The doctor was worried about a possible cardiac arrest due to the blood pressure and septic shock and wanted drug levels monitored closely to raise his blood pressure again. Once we arrived at the PICU, Dylan freaked out as they attached him to all the wires and machines, it was awful. The doctor explained that Dylan’s source of infection may be in his hickman line and that they were going to insert a temporary line into his groin extending up to his chest, he also explained that a catheter would be put into his wrist (A line) to monitor the blood pressure issue more accurately. Dylan was given a sedation as they put the lines in place and stitched them in. After that was over the nurse attempted to place a urinary catheter in but Dylan was waking and kept pushing it back out. He screamed and I started to cry. He kept saying, “my doodle hurts, leave me alone” so in the end they decided to not place it in, thank god! Dopamine was given and the thankfully Dylan’s blood pressure started to rise, but it still remains on the low side and Dopamine continues to keep it stable. Attempts to lower the dopamine levels have failed and as soon as they lower it, so does his blood pressure. Two x-rays were taken to check his new temporary line was in place and more Tylenol was administered as his fever continues. Dylan had another blood transfusion and is on 3 different antibiotics. So far blood cultures have come back negative and the source of infection remains a mystery. I then watched as the sun came up at 5:30am and I sat in the chair beside Dylan, looking at him as he slept off the sedation. I realized that this is the place that Amanda died and so did Justin over the weekend, it was a sudden hit of reality again. I can’t believe that Dylan was doing so exceptionally well and within such a short time span, ended up in ICU. It is now a reminder that we must live everyday as if it were our last. Dylan's last day of chemo was cancelled as he is not stable enough, and his current state is top priority.
I spoke with Dr Modak on Wednesday in regards to the FDA and MIBG treatment. Dr Modak told me that paper work had been given to the FDA after a very long meeting. The FDA have told MSKCC that they will reply in 4 weeks time and Dr Modak told me that he thinks there is a 90hance that MIBG treatment will resume by mid July. He also explained that children who had already entered the study were allowed to continue, which indicates to me that the FDA are not concerned about that actual treatment, it must be a minor paperwork issue. Dr Modak told me that Dylan is first on the list to start MIBG treatment as soon as it becomes available again at MSKCC.
Many people have told me that Dr LaQuaglia (Dylan’s surgeon) has his hands blessed before each surgery. Yesterday I went out to grab some lunch and I saw Dr LaQuaglia leave from MSKCC and go into the church across the street. I assume he was on his way for his ritual hand blessing. It must be such a hard job doing what he does, this way he is putting the many children’s lives he operates on, in God’s hands and not his. Now I understand why when I thanked him for Dylan’s successful surgery, he replied “don’t thank me, thank God” He is such a talented surgeon, in fact as far as I am aware and from what I have read, he has never lost a Neuroblastoma patient due to surgical complications.
I am so tired, I must finish up this entry. I cannot sleep, but I will rest my eyes a little before Dylan wakes up screaming when he realizes what’s in his groin, poor baby, he doesn’t deserve to go through all this. If I could change places with him, I would do it in a heartbeat. They were my first words to Tim when he told me last July, that the doctors had found a lump in his stomach, my reply was “No, why couldn’t it be me?” then I just crumbled in Tim’s arms.
