regress report

Thanks for all the emailed and commented support, hugs, thoughts and prayers for my dad and our family. The bad news is that Dad's health has continued to decline over the past week, with a rapid progression of the Guillain-Barr黠the good news is that, so far, his new kidney, at least, has been relatively unaffected.

As I reported earlier, last Monday Dad was taken to his local hospital where over the course of the day the diagnosis of Guillain-Barr頷as made. Tuesday morning his medical team in Richmond from the Transplant Center ordered him transferred to the hospital there by helicopter and on Tuesday they began the first of five plasmapheresis therapies recommended for treatment of some autoimmune disorders, including Guillain-Barr鮦lt;/p>

I left Arlington for Richmond early Wednesday morning and, fortunately, was able to spend some time with Dad that day while he was still conscious and breathing on his own. By Wednesday evening the paralysis already had reached his arms, over which he had only gross motor control (e.g., he could flail his arms but not grasp things with his fingers). His breathing wasn't visibly labored, but the diagnostics showed that his oxygen intake continued to lessen.

On Thursday morning he was visibly gasping for breath and, within twenty minutes after Mom and I had left the hospital after morning visiting hours, the hospital called to ask for permission to put Dad on a ventilator. When we returned, he was still conscious and very distressed, grabbing at me and mouthing that he couldn't breathe. The nurse acknowledged that it would feel to him as though he weren't able to breathe--she said "It feels like you're breathing through a straw"--but assured him and us (and the monitors confirmed) that he was actually taking in more oxygen than he had been managing on his own. It was nonetheless a very frightening and disturbing experience to have someone you love pleading with you to help him, when you're helpless to do anything other than try to be comforting and assuring. For my mother's sake, too, I have to be the strong one.

Fortunately, the order soon came for sufficient sedation to calm Dad. He remained able to communicate roughly with us through head shakes and nods and eye movements only briefly; as the sedation deepened that afternoon he has appeared almost comatose since. The medical team tell us that he can hear us, but he has no way of communicating back and we have no way to know how much he hears or how much he understands.

Thursday evening we learned that he'd also developed a pneumonia, and they added antibiotics to the mix of anti-rejection drugs, blood pressure medications and insulin passing through a maze of IV lines. On Friday--the day that Dad turned 65, asleep and sedated in a hospital bed halfway across the state from his home--they inserted a feeding tube via his nose, and on Saturday began giving him nutrients through it.

Saturday we also met with the pulmonologist who recommended that a (temporary and reversible) tracheostomy be performed so that a trach tube can be used in place of the ventilator, given the sense that Dad is going to require mechanical breathing support for several weeks to months; that a PEG be inserted into his abdomen so that the esophageal feeding tube can be removed (thus reducing the risk of sinusitis, which frequently occurs with the use of feeding tubes and to which my dad, immunocomprised as he is, would be particularly susceptible); and that an arterial PIC line be inserted. These procedures are to be scheduled for the next day or so beginning tomorrow.

For our part, all we can do is sit and wait. The implication from our conversations with the doctors, our research into this syndrome, and Dad's presentation is that this is going to be a long illness and recovery, certainly on the order of weeks and very possibly months.

I stayed in Richmond with Mom through the rest of the week and into yesterday morning. Mom notes that this is the longest since before she and Dad married that they've gone without talking to one another. My sister will drive to Richmond tomorrow for the day, and I'm planning to spend my weekends down there, but I hate that Mom is alone there otherwise--while Dad is in the CCU, we're only permitted to spend three two-hour periods with him, two of us at a time; the rest of the time is exhausting and frustrating, especially for my mother there alone, in an unfamiliar and relatively quite large city, when she is accustomed to being almost continually surrounded by her husband, parents, daughter, grandsons, sister and in-laws.