Emma has had a stressful morning. When they tried to give her a nipple feeding two nights ago, her blood oxygen levels dropped and so they stopped the trial feedings. Today there was an informal team conference where the plan of action was discussed and argued over until we came up with one that everyone could live with. It was emotionally draining. I don't think that the medical staff is used to family that respectfully disagrees with them on any points, major or minor. It is a fine line to draw between respecting the professional's specialized knowledge and skill, and requiring that the patient be treated as an individual. It is very easy to get put on the medical roller coaster of standardized care - and while standards are very important, there is an art as well as a science involved.
Hospital personnel (and I include myself here, as I have seen myself fall into the same pattern) become so accustomed to the technology and the pathology in their environment that they can fail to recognize just how scary it call all be to the unititiated. Take that staple screening tool of the inpatient - the chest x-ray(CXR). If you see a radiology tech pushing the portable x-ray through the halls of just about anyplace, it is a fair bet that he is either coming from or heading to doing a CXR. Elevated temp? Elevated white count? Unexplained just about anything, the diagnostic workup is likely to include a CXR. If you add in those done to confirm the proper placement of a tube, you can see that lots of them could be done on one very small child. How much is too much? and when does one truly need to be done?
When you have a baby like Emma who is a 1 in 25,000 cases scenario, with 2 major congenital anomalies but normal chromosomal exam, it gets even more complicated to know what the best practice and care should be. I worry that her neuro docs and her GI docs/surgeons are not always talking to eah other. Further complicating the care is that she is assigned a neonatologist as her primary care physician. This guy is supposed to co-ordinate her care but I am not sure that this has been happening.
Anyhow, we are working on it all. Specific prayer request for all of you. Emma is getting tube feedings starting today, and on Monday 7/9 they will try to nipple feed her again. If she tolerates that well, they will continue. But if not, they will have to do an x-ray procedure to see if she has issues with swallowing that might be an ongoing problem. Please pray that the tube feeding will go well and that the nipple feeding will as well. Thanks.