Thursday, 30 July 2015

Medical update number.. who knows what?

Once again this week has given us mixed reviews.  The last two dressing changes on his sternum have been very encouraging.  The top wound has basically completely healed, just slightly scabbed now.  The bottom wound, up until Saturday had progressed very little.  In fact, upon changing the dressing the CV surgeon decided to consult plastic surgery and discuss a muscle graft into the wound to help speed up the closing/healing of it.  During Monday and Wednesday's dressing changes, the hole is much smaller and less deep and it look like it will close up on its own in the not too distant future!

As far as eating goes, we are also making great progress.  Jadon has shown a strong appetite and interest in food.  He is still on IV nutrition as his primary means but is managing to eat enough that they have started weaning that down.  The medical team feels that this improvement is likely due to some increase in heart function as a result of the bypass done in early June.  We are praying (an welcome all others to join) particularly that he can get to the point of taking enough nutrition orally that he will not need a G-tube as was originally planned.
Jadon playing with water during a physiotherapy session up on the Starlight Lounge patio.
In typical Jadon fashion though, he has the doctors flumoxed on other fronts.  His kidney function numbers and electrolytes have been off and not following a predictable pattern.  As a result nephrology (kidney specialty) was consulted again and they also asked for a endocrinology (hormone specialty) consult.  The endocrine team is not sure what is going on but think he might have a rare complication due to his severe sternal wound and bone infection causing excess production of a form of vitamin D which in turn encourages calcium to be pulled from his bones increasing his calcium levels.  They will track this closely and if the levels do not drop they will give a drug used in osteoporosis patients.  This morning the calcium was trending in the right direction which is encouraging.  Jadon also had a kidney ultrasound and specialized urine tests which actually indicated an increase in function, which is once again encouraging.

One of our current biggest challenges is Jadon's sleep... or lack thereof.  He has typically been getting about 6 hours of sleep spread out throughout the night with waking periods ranging from 15 minutes to 2 hours.  He is not getting as much sleep as he should, and so neither are mom and dad!  We are all trying a variety of tricks but nothing has worked yet to get him to sleep more than 2 hours in a stretch.
Jadon sleeping on his stomach for the first time in 7 weeks.  He no longer has to wear his corset.  Didn't help with the sleep length of quality though :-(
So as progress is made on some fronts, the pathway is still not completely clear.  We go through a variety of emotions as issues arise, questions are posed, answers are found.  As one of the nurses once again reiterated, "With Jadon we are not following a textbook... he is writing his own!"

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