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Archive for the ‘Updates’ Category

And Slow It Goes

I appreciate all my follower’s thoughts and prayers. I have been very busy with my son, and not very active on Twitter the past several days. He continues to improve….slowly. He has started to sit up on his own, which is a positive. He has also stood up a few times only to quickly realize that wasn’t such a great idea. He attempted to walk for the first time yesterday and he did not do so well. The term “drunken sailor” comes to mind. He at least laughed instead of crying which he has done some out of frustration. He will get there again, he just needs time. The FA doctors want another set of blood counts at the end of this week. We are praying for a continued upward trend. We have high hopes just based on his energy increase over the past few days.

Today for some reason it was really noticeable the weight he lost during all this. The lack of “pudge” on his thighs and arms was very obvious and stood out today for some reason. He is taking it well, being weak that is, but you can sense he is missing doing the things he remembers doing before this. We are hoping that it is merely weakness and fatigue rather than developmental set backs. Still, we know he will re-learn and conquer those challenges, mainly the walking. He had become so well adjusted to walking, even in his little shoes. We can not wait for that again. Despite the slow go, we a grateful for him and his amazing attitude. It has been a very rough and emotional few weeks. The likes we have not experienced in awhile. We did not miss it, and while we know there are more of these moments ahead of us, we will simply cherish the thriving ones more fervently.

Thanks for reading my point of view, http://www.twitter.com/fatherpov

Posted with WordPress for BlackBerry.

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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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Well it has been several weeks since I have had the opportunity to post anything. Things have been, how shall I say this, hectic sounds appropriate. This week alone the basement in our house has flooded twice, once being at 2 am, the washing machine has become possessed and the dishwasher flooding my kitchen – unrelated to the basement floodings – and of course our day-shift nurse missing 4 of the last 7 scheduled shifts has left little time for blogging or anything else.

I am not certain that I have anything of substance to write about today except to tell you that I am alive. I should update everyone on the 12 year old boy I had written about in my last post passed away two weekends ago. This disease, is horrible. Then news came that a second patient passed away the following day. Too many precious lives taken and sadly it will continue to do so until a cure can be found. As fate would have it, five days later the Fanconi Anemia Scientific Symposium began for researchers from around the world. What a timely, yet tragic reminder for this gathering of scientist and doctors to discuss treatment, research, and the path to a cure. Anyone that is connected to this disease in any way will tell you how precious the angels of FA are towards finding a cure.

Thanks for reading my point of view, http://www.twitter.com/fatherpov

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A new article entitled No Experience Necessary is posted in Our Home Health Section. It discusses a newly graduated nurse that has been assigned to my son’s case. With no experience of any kind is she really the right choice for the assignment?

read it here

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

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We updated the Staffing – Home Nursing page today. Take a moment to read about just how bare bones our nursing coverage has been, the shocking number of days one nurse has missed in 8 months, and more. You will be truly amazed at what you read.

Thanks for reading my point of view,

http://www.twitter.com/fatherpov

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