No Surgery, for now...

For now, surgery has been delayed indefinitely. We met with the surgeon today, who has decided that he wants to have more information about the root cause of Elijah's bowel issues before moving forward. Basically, not enough tests have been done. Also, Elijah's bowels are still completely full. I didn't fully understand how, after changing many, many diapers every day that this could be even remotely possible, but the scans don't lie. Apparently, there is blockage and the miralax is just pushing stuff around the blockage. Our orders for the weekend are twice a day ADULT sized enemas and twice a day ADULT dose of miralax.

So, on Monday, they will repeat the scan, if he is still full, then they will admit him for a bowel cleanout. Yeah, that doesn't sound fun. Then they will do an enema contrast to see the shape of his bowels. Finally, they will do a bowel biopsy to determine which part of the nerves are dead - and which are not. If there is enough functioning bowel, they may be able to do a "pull-through" procedure that will allow him to function fairly normally, but with a section of the bowel removed and the good stuff all connected together. This is only a possibility.

Another possibility is that by cleaning his system out - allowing him a clean start, it would allow his body to "learn" how to control his bowels. They aren't holding out a lot of hope for this, but think we should try.

Finally, we could still end up with a colostomy. Again, not what we want, but one way or another, we think that we have a good team of doctors that is committed to quickly running more tests and assuring us that it is the right move, right now.

I feel exhausted from the quick change of plans, but happy to have more answers before moving forward. I hate giving the enimas - it is torture for Elijah and the first one didn't produce a lot of results.

Pray that we'll get through the weekend first and have more answers on Monday. We go in for a scan first thing and then see the doctor again at 11.

Decision Made

We will not be taking Elijah to Cincinnati. After further discussion with the intake nurses there, it appeared as if their treatment is not what we feel would be best for Elijah. It was very clear after reading more on their website and the conversation this morning with the nurse, what our decision would be. We are very thankful for this clarity. The treatment they were recommending would include a daily routine that would really restrict Elijah *every*single*day*for*the*rest*of*his*life! They doubted how much success we would have based on his age and said that he would likely end up with a colostomy anyway. Furthermore, many children who have success with the program, feel so tied down by it, that they opt for a colostomy in their teenage years.

So it obviously isn't the breakthrough we thought it might be. However, some good news did come in today. The gastroenterologist, who had previously only reviewed Elijah's chart, but didn't have any openings to see him, has had a cancellation for tomorrow and Elijah got the appointment. I will feel much better having spoken to him in person and having the opportunity to ask a lot of questions. Also, Elijah is at Roxanne's today and at noon she said he had gone potty on the toilet, twice in the morning. This has never happened at home, so it gives me hope that he might have some urinary control, but loses it only as his bowels back up. Or maybe enough control to go on a timed voiding schedule?? What this means is that with a colostomy, he may not need catheters in any form?! Only time will tell, (and honestly, we'll know next week) but wouldn't that be wonderful? So tonight, we will rest much better, knowing that the Lord is guiding us on this journey. Day by Day!

Making Big Decisions Fast

So last week, the urologist, gastroenterologist and pediatrician all agreed to move forward with colostomy and placement of a supra pubic catheter. We've been giving Elijah a Miralax treatment to try and clean him out. Although its been working to the tune of many diapers a day, it hasn't been working to the end of cleaning him out. The x-ray today still showed a good amount of stool left. They also removed the catheter for a few days, because his urethra was irritated so they wanted to give it a rest.

Yesterday, the surgeon worked with Elijah's doctor and moved his schedule around to make an opening to see Elijah next Friday, the 11th, for a consult and if there was time, he might do the surgery then... (BIG IF, since the doctor is on call that day.)

Then, today, we saw the urologist again, and he had gotten information and is recommending that we stop moving forward with the colostomy and instead take him to Cincinnati Children's Hospital Colorectal Center which has treated a patient very similar to Elijah with success. This of course would be a big step and a big deal for Elijah, for our family life during his treatment, which could take a long time.

So now, we just don't know what to do... Pray for wisdom for us, and the doctors. Pray for Elijah to be comfortable and to empty his bowels.