I apologize for it taking so long to write an update on Sam. If you read my last post (January 1st) then I’m sure you understand that we’ve been quite busy here. Before I go further I want to offer my sincere thanks to those folks who replied to my last post. I sat down this morning (Sunday morning) and started to reply to each one separately, but in the interest of time I thought I quick update might be a more efficient way to go—free time is at a real premium right now. Again, I thank each of you for showing me that you care with your sincere comments, and please know that I’ll get over to your blogs just as soon as I can!
Here’s where things are regarding Sam. I’ll talk about the good news first.
Mobility and energy-wise, he’s doing pretty darn well. Sam is moving about the house great and not complaining of any back pain at all—in fact, it’s been weeks since we’ve felt we should offer him pain medication. His energy level is about what you’d expect. Since leaving the hospital in late December he’s only been out of the house five times and each time he starts out with lots of energy then tires quickly after walking any distance at all—but again, no complaints of back pain in weeks. We expect his energy-level will increase with time and a return to normal day-to-day routine. Our hope was that he would return to school on February 11th (he’s attends an 18-21 year-old program through the local school district) but that plan may have to be altered. . . .
Now the bad news.
Although Sam’s back appears to be healing more-or-less on target, the bowel and bladder issues that were brought on by the disc problem are not. The catheter has been out for a while now and all concerned believed his ability to void was quickly returning to normal . . . but urology tests show it is not. Recent imaging shows that Sam is not emptying anywhere close to completely and at the same time it appears—sensation-wise—that he has zero feeling of being very, very full of urine. Yeah, a backup of urine is not a good thing and can’t be tolerated for very long at all. And although we’ve worked diligently over the past few weeks to help Sam relieve his serious bowel backup, a comparison of recent imaging to that of December’s x-rays show that precious little has been accomplished with “moving things along.”
Obviously we need to resolve the bowel and bladder issues as soon as possible: very bad things happen if you can’t dispose of waste. We also need to feel as confident as possible that Sam can handle restroom issues on his own before returning to school; we’re not very confident of this right now. We want the February 11th return to school to happen, but it may have to be postponed.
As of this moment all we can do is to observe Sam’s behavior, keep in close contact with his physicians (not the doctors he had prior to the correct diagnosis), cross our fingers and say a lot of prayers, and hope time and medication will do something positive.
. . . but wait, there’s more!
Based on what we heard during Sam’s stay in the hospital, Patty and I were under the impression that her employer would be supportive of the time she would need to take off work to care for Sam (the best estimate was approximately six weeks). To our very great surprise, Patty’s employer decided not to be supportive and told her to report to work by a specific date if she wished to keep her job. Patty, putting her child’s needs first, was unable to do that. Her employer of six years terminated her in mid-January. [Note: Patty did not qualify for FMLA because she was not a fulltime employee.]
Long story short, there’s been a lot going on in our household. I’ll post as time permits—please be patient with me if you reply I don’t get back with you quickly.