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Posts Tagged ‘colostomy’

One of the many anomalies my son was born with caused by his Fanconi Anemia was an imperforate anus. On November the 8th my son had surgery to reverse his colostomy. We were scheduled to be in the hospital four days. Well it is eleven days later and we have had many complications with this surgery.

The first stage was a PSARP or “Pull-thru” as it is called. This was done in June to create an opening and pull the rectum through (thus the surgery name). Dilations were the most difficult thing to do to our child to make the rectum muscles open and stregthen to create better continence chances. Once the healing process was complete a colostomy reversal could be done. My son has had this since he was less that 36 hours old. We were excited to do this as it was to create a better quality of life for him in the long run. That brings us to tonight.

His stomach has been very distended and he has had a mass around the surgical site. This was dismissed as an normal abnormality that resolves itself over time. They called it a saroma which is fluid build up around the tissue. It is typically reabsorbed by the body. In my son’s case it worsened. Then today high fevers began causing grave concern on my part. Cultures were done and we are awaiting preliminary results. The Bone Marrow Team is following this develop and reccommending the appropriate treatments. It is feared to be a central line infection. This evening the colorectal team assessed my son’s stomach and were concerned by the appearence of the mass they have so quickly dismissed through the past two weeks, despite our questions and voice of concern. It was so disturbing a CT scan was ordered immeadiately. They moved him straight from CT to the operating room at 11 pm on a Friday Night. Emergency surgery! The findings based on the CT scan is that the bowel is herniated and has pushed up so much that it was protruding outward and causing gas and fluid not to flow appropriately. The surgeons, the best in the world at this surgery in fact the creators and pioneers were uncertain, how long the surgery would take, what they would find and the final action until they opened him up. More than likely they would need to return the colostomy. The very thing we came here 11 days ago to get rid of and move forward. There are feelings of guilt that I know are unfounded. The waiting after such a long whirlwind day is intense. Especially anticipating the unknown outcome and not having any idea how long I must sit here and wait. I am blessed to have such great support from many people whom I have never met! Your support, thoughts, & prayers give me the strength to press on and feel strong! For that I thank you all.

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

Posted with WordPress for BlackBerry.

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Past Few Days

It has been a very exhausting and stressful few days. I have been battling my son’s colorectal doctors to take a look at some odd and concerning lumps on his colostomy stoma. We have been playing the photo email game for several days. Why i do not know, but they are simply refusing to bring him in to look at him despite his bone marrow doctor requesting fervently. Late yesterday we finally received an email simply stating that it was nothing to be concerned with and will be dealt with during the colostomy closure in the future. That is it, no mention of what they are or that there is nothing to watch out for in the mean time. Just live with them for the next several months. Seeing how this opinion was arrived via photos only the fact that the doctor will not commit to what they are is a little concerning and creates doubt. If you can not identify these by name how can you be so certain there is no cause for concern? Some of my son’s other physicians agree with us on that point.  We will just have to be vigilant and watch for changes. I believe I have commented to this effect before, I wonder if other parents have the same difficulties with advocating?

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

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Today was one of those days that are exhausting from start to finish. Speech theory, then occupational therapy, and a meeting with our medical supply company. This was intermingled with a slew of phone calls, both being made and received. All in the name of advocating and providing for my son’s needs, mostly medically. It began last night finding a very hard nodule on my son’s colostomy stoma. While it doesn’t seem to be causing him much issue, at least clinically it is bothersome that this suddenly appeared. There are a few indicators it is annoying him some. The big problem is whenever there seems to be anything to do with his colostomy it turns into a finger pointing, excuse making, pass the buck, frustrating time. (more…)

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