Monday, July 18, 2011

An update.

So much has been happening these past few days. We started off the weekend with an electrical "emergency" in our home that required immediate attention and an electrician willing to work for 10 hours on a Saturday. After a long day and many dollars the issue at hand has been fixed, thankfully. While the electrically skilled professional set up shop in our basement the boy was feeling pretty poor. A week ago he started to become jaundice, he's now a very impressive shade of yellow. While his liver isn't too happy at the moment he was also having a considerable amount of pain. Throughout the day Saturday he was asking to go to the hospital, stating that he was feeling "really bad." We contacted the doctor for advice and began relaying what had been happening. We were teetering on that fine we take him to the hospital or do we try to wait for a clear sign of what exactly was causing him such discomfort. With the doctors advice that evening we eventually made our way into the Emergency Department (ED). After talking things through with Dr. R we were able to pinpoint a cause of concern and possibly a source for some of his pain....the bladder. Wyatt has had an ongoing issue with this area. For quite some time now we watched as his function began to deteriorate gradually and just the act of peeing became very difficult. When we arrived in the ED and told them why we were there, many of the staff was first concerned by his color, each asking inquisitively if his "coloring" was normal for him. I replied "well, noooo", but assured them that it's already being addressed, and not why we were there. They eventually cathed our boy to relieve his bladder of the pressure that was increasing. And with that the pain did decrease significantly. In fact, we have not seen him rate his pain a "2" on the pain scale in quite a long time...he was much more comfortable with the cath in. We eventually came home in the wee hours of the morning and crawled into bed. It was a long, long day. Yesterday was more of the same and today, as well. We have an idea of the upcoming plan, the doctor said he would be calling the Urology office this morning and that we need to see them ASAP. We're now just anxiously waiting to hear when. Hoping for sooner rather than later, as he's struggling to stay comfortable. In the mean time we've cut out the daily saline bolus that he gets, as it seems almost torturous to load him up on fluids when his body is already hoarding what it has.

We did have an actual appointment with Dr. R last week. I can't believe that was just last week. It seems long ago, already! Of course, number one point in our discussion was the boys overall color, yellow. He earned himself labs and an ultrasound after the appointment. We also discussed a few things that we've been thinking about, one in particular being a new study drug, EPI-743. The FDA just recently expanded the trial to include a larger spectrum of patients. We were aware that Dr. R may have to do some convincing and hurdle jumping to get the approval due to several issues of Wyatt's, but he did say that it may be possible to get under compassionate use. I'm not sure if this drug will do much for our boy...we won't know unless we try it. But I would love to think that it would and hope that it may. We originally approached the subject asking Dr. R if he felt this drug was "worth it." Clearly, Wyatt's worth it, but I do question if the drug will benefit him. For some reason I just don't have a feeling one way or the other with this one, which is unusual for me! For now I think I may need to take it for what it is....hope.

Last week we also had the chance to pick up the boy's new high/low activity chair, the x:panda. It's very nice, equipped with all the supports and has plenty of adjustability for his comfort. The tray is very big and will be really nice when working on school work....or playing with play doh. The pictures may not reflect his true feelings about the chair, he's been feeling pretty crummy. But I did get somewhat of a forced half grin, that's gotta count for something! So far, the x:panda gets two thumbs up from us!
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1 comment:

  1. It sounds like Wyatt is having bladder spasms. They are very painful! I suffer from them and know exactly how bad they make you feel. I'm sorry Wyatt is feeling so crummy. I have read about the new drug and the expansion of who is able to get the drug. I hope and pray that this drug is the miracle Wyatt needs.