October 2010 London
BLOG 41: The Miracle Man
After the excitement of finally seeing some progress for the better, reality (King-of-the-Jungle-style) sets in.
It will be a long, slow haul. OH is now out of the ITU and is finally in the general surgical ward in this specialist hospital. The NHS is never perfect but nevertheless is a wonderful institution, no doubt about it. He is receiving excellent care – but he is unbelievably weak. He’s off the oxygen, no longer needs a breathing tube or dialysis, and his kidneys, though weakened have not been permanently damaged. As to brain damage, if any, too early to tell as he is too weak to speak more than a word or two. He still has a number of tubes coming out of various part of his body and due to the numerous operational procedures (opening and reopening and closing the abdomen) he has been left with a large incisional hernia i.e. there is no longer a functioning muscular wall to the abdomen to hold the organs in that region in place, so when he is eventually able to stand up, he’ll look like a pregnant man in the final months! His previous surgery (before this massive operation) had left him with a relatively small incisional hernia due to the decision to use a mesh rather than stitches – which was a new procedure at the time. Unfortunately, the mesh broke before leaving hospital and another operation to fix that small hernia was unwarranted. Before this op, we had hoped that , as an incidental part of the surgery, the hernia bulge caused earlier could be eliminated. Now, that hope has been dashed and he has been left with a much bigger hernia! He is unaware of this, of course, but it is a tiny price to pay for being alive.
Daughter is still with me. She has put her family and work life on hold in the US and comes with me every day to the hospital. Sons and other family come in the evenings and weekends whenever they can. Our lives have narrowed down to the routine of hospital/home/hospital/home.
I’m in the ward. Daughter has gone to get us some coffee. The prof sweeps in with junior doctors and medical students in tow, like royalty accompanied by his courtiers. He pulls the curtain around the bed and I offer to go but he waves this aside. He addresses his courtiers: “and now I’d like to introduce you to the Miracle Man!” He then goes on to tell them of all the difficulties, trials and tribulations he had in OH’s operation and I can tell from the admiring looks on their faces, that they think that he, not OH is really the miracle man. There’s no mention of the Aussie doctor or other members of the team at all.
The nurses are trying to get OH to sit up but this is both too painful and exhausting, even though he is supplied with a special battery device with an inflatable cushion under his bottom to make it easier. The latest medical research, it seems, shows that no matter how major the operation, patients must get out of bed soon after the op, even if that is just sitting on a chair next to the bed. Easier said than done. OH is so weak that even when he is heaved out of bed, with all his tubes and drains and special seat, he just flops sideways over onto the adjacent bed. As to standing, never mind walking or talking, that seems a distant goal. The physios, a cheery team of two, a man and a woman, visit the ward every morning and afternoon. They valiantly try to get OH to sit and give him encouraging words, but to no avail. He flops back down again, sideways onto the bed. When they go, we carry on, urging him to try to sit up for a few minutes. He murmurs “tired – bed” and flops right back down.
“Come on, Dad. You can do it. Just sit up straight while I count to three” says Daughter and begins to count “One . . . two. . .” Flop. We straighten him up, he’s like a rag doll, a pregnant rag doll (with his new incisional hernia). “One . . . two. . .” Flop. “Tired – bed”. So, after about 10 more minutes looking at him flopped sideways onto the bed, we call for the nurses to help him back. He is fast asleep within a minute.
Food is an even bigger problem. He’s too exhausted to eat, so he’s mainly being given special fortified milk based drinks to drink through a straw. Ha! Not so straight forward either. 1) he needs to sit up a bit to drink 2) he’ll only bother when the drink is lifted to his lips and strongly urged to drink and 3) he only tolerates two of the six varieties available: banana and strawberry. Doesn’t like vanilla, chocolate or worst of all, the apple flavor. Luckily, this ward lets relatives in throughout the day, though there is a sign on the door saying that there is no visiting allowed during the two hours when lunch is taken round to patients. That is just the time when relatives are most needed! If we weren’t there, OH would neither eat nor drink. Evidently, others feel the same, as during the lunch period, many patients have relatives at their bedside – with a number consuming home-brought meals. There’s a strong smell of curry and I don’t believe that the catering team serve curry at every meal! Anyway, this rule is obviously relaxed due to the benefits that relatives obviously bring to the hard-working nurses and auxiliaries, particularly at meal times. It doesn’t bear thinking of as to the fate of some other patients who don’t have the benefit of relatives at their bedsides during meal times.
OH is losing weight. The nutritionist comes to the bedside during one lunch period. She looks sternly at OH, lying comatose in bed after the effort of trying to sit up. We, Daughter and I, have been trying to get him to drink his ‘lunch’. “Not good enough!” says the nutritionist, turning to OH. “You need CALORIES. CALORIES! CALORIES – to heal the surgery”. She adds an item to his daily diet sheet: the list of drinks and soft food that he doesn’t much touch. The item is a small carton of double cream to be had with every meal. OH finds eating solids too tiring but he used to like the occasional jelly. Maybe if I bring that, we can add the double cream to it as an easy-to-eat dessert. The other thing he likes is my sister-in-law’s homemade chicken soup so when she comes she’s always armed with plenty which we label with his name and keep in the hospital ward fridge. I doubt it has too many calories though, even if it is nutritious.
If he doesn’t begin to gain weight soon, we’ve been warned that they’ll have to feed him by tube, another onslaught which we feel will be a retrograde step.
Come on, OH! Eat! Drink! Sit up! You can do it!
Oh, yes, and while we’re about it – you have to stand up and walk, too!
. . . to be continued . . .usually posted on Thursday
