T+50: Raining Airbuses

There's not been much change in Kay's condition or situation in the last 24 hours. Her temperature is up and down, mostly down fortunately. Her need for oxygen is also up and down. Today she seems a bit more cheerful than yesterday. As yet the medics haven't come to any conclusions about the cause of the problem. A chest x-ray yesterday showed a fine shadow on her lungs, which could be caused by a virus. But it's not clear if it is a virus or which virus or what. Measuring the CMV virus, which we know that she has in her system, takes a couple of days so the results won't be known before Monday. Other tests have so far been negative, but asking for a load of lab tests on a Friday seems to be asking to wait until Monday for any results. So it remains a big puzzle.

However I'm sure that this situation has been, if not caused, certainly exacerbated by weeks of poor nutrition, this in itself caused by all the nausea that Kay has been suffering and the failure of the medics to switch Kay over to a more appropriate feed when she went home. This morning I did a google search on nutrition post bone marrow transplant and from all the medical articles on the subject that came up it does indeed seem to be a very important matter. I still have to finish reading the results of the search but my initial feeling is that, while it seems that poor nutrition does not affect the recovery of the bone marrow, it does have an effect on the patients resilience. Surprise, surprise.

Still, one article that I looked at indicates that the alternative, intravenous feeding, leads to no better results but costs 2.5 times more than NG feeding. So I don't suppose that it's the technique that is at fault but more a question of the execution. Certainly we heard last week that the feed that Kay had when she went home was actually only meant to be used in the weeks immediately after radiotherapy when the stomach & intestinal mucous membranes are damaged or weak. Once they had recovered she should have been switch over to a different and more "broad spectrum" feed. In fact, this only happened last week after Marion & I questioned the feed that she was getting. Since the change Kay has suffered much less nausea, so again a mistake/oversight by the medics has led to Kay unnecessarily suffering, in my opinion. And has contributed to us being here now.


I'm starting to think that maybe I/we should write a parent's guide to managing their child and dealing with the medics during a bone marrow transplant. It is increasingly clear to me that the parents role in all this is not purely pastoral. In fact the parents have an absolutely essential role in ensuring that the medical care of their child is executed diligently. The problem is, as in this case, that parents don't have the knowledge to question what is going on. In other words, Marion & I didn't know that the NG feed that Kay was getting post transplant was special and therefore we couldn't question its applicability. In the end we've ended up questioning it because Kay's condition continued to deteriorate and it suddenly occurred to us that the only common factor was possibly the NG feed. 

I also think that Marion & I are not typical parents in these matters. We're both bloody minded individuals who do not necessarily take anything we're told at face value and we both have the intellectual ability to reason things out for ourselves. I suppose that this might not apply to the majority of parents who find themselves in this situation and I then wonder how their children fare. So much of the medical care that Kay receives seems to be based on superficial observation and guess work. For example, the doctor who did Kay's check on Thursday morning pronounced her to be in fine condition, except her temp of 38.3C. Never mind that she'd been losing weight for weeks, was greatly weakened, suffering continued nausea, etc, etc. He said that unless her temperature climbed above 38.5 we shouldn't be concerned.

I didn't trust this doctor from the moment I set eyes on him, not least for the completely biased reason that I don't trust any doctor who smells of cigarette smoke, but also because he didn't know his way around the examination room, couldn't find the forms necessary to order new meds for Kay, need help from me to determine what Kay needed, couldn't find the forms to order blood and in effect was only able to operate because the nursing assistant with him could fill in all the blanks. But she was filling in so many blanks that I was left wondering what the added value of the doctor was. And, if it wasn't that Kay needed blood, this guy would have sent us home. This what I mean by superficial observation. I'm a software guy and although the software world is full of problems, if we operated with this level of care, diligence, observation and logical thinking, it would be raining Airbuses.

I'm now resolved in this case that I'm not going to accept that Kay is fit to go home until she's back above her minimum weight of 28.5kg and that her weight gain is stable. I think that this should have been a primary metric that she should have achieved before being released a few weeks ago. Sending home a child who is losing weight seems in retrospect to be a recipe for disaster. Let's hope that it hasn't come to that this time.