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.

Not Sleeping

It's been a busy day and I can't sleep. Scott's mom had come to surprise us for a visit a few weeks ago on Micah's 6th birthday, stayed through Gideon's first birthday and just traveled home today. It was good to see her and we really appreciated all the help she gave us around the house and with the kids, but are ready to get back to our own routines too.

However, last night I woke up several times thinking of a new question for the doctors. I just can't help but feel for E and what he will go through over the next few months - even if ultimately it's for his own good - it's hard to reason that with a four year old. Now tonight I'm laying awake again thinking of the same things.

Pray for all of us. It's sure to be a stressful time. And pray for Elijah that he will stop hurting. We've started the bowel cleanout regimen and it's working, but he is still in pain - albeit less often. He tends to revert to babytalk and behavior when he is hurting, and we have to draw a hard line to not allow this.

A plan...

Today, Elijah saw Dr. O. For now the catheter stays put. Next week on Wednesday, we'll run a few tests and xrays and then schedule for a super-pubic catheter to be placed. We are also meeting with the gastroenterologist to talk about a colostomy. Not fun. Not fun. Not fun.

Yes, It's been a while...

A friend of mine reminded me how long it's been since I wrote anything here, simply by sharing her new blog. So I thought I'd pop back over and give everyone an update - it seemed like a good time to do so anyway.

So ...since September, not too much has happened. Elijah was able to remove the foley catheter and begin the road to daily self cath. He didn't get far before a nasty insurance hiccup brought everything to a screeching halt. So we made do. At four, he is still in diapers and we thought a good first step to independence would be to learn to change his own diaper, wet or icky. He learned this new trick in no time flat! I think it really helps him feel like a "big boy".

However, just this past week and half, he seemed to have problems again. First, he had a nasty bladder spasm, that caused quite a scene and sent Daddy up the play structure at Chuck E. Cheese to retrieve him. Then the next night, he said his belly hurt and he threw up a few times. Not sure if it was bladder related, but seems like it might have been. After a week of toughing it out, with long dry spells between wet diapers, some barely wet, we took him to the ER at the advice of the pediatrician.

There was blood and thick icky urine when they cathed him and an infection. So now he has the foley catheter back in and we are meeting with Dr. O again on Monday to continue the path toward either daily self cath or perhaps a super pubic catheter and a colostomy. This has been recommended in the past, but I've been reticent, holding out hope that he would figure it out and get better. But as time passes, that seems less likely and getting him used to something more permanent is the goal.

Please continue to pray for us as we make decisions for Elijah and for him as he learns to cope with so much change and pain.

Next Week

It's been a while since I posted. We had a busy vacation and came home exhausted. While on vacation, Elijah's catheter deflated and fell out - so we had a quick ER trip to get that fixed. Then last Friday, there was bleeding around the catheter, which ended up being an infection. Other than those two hiccups, Elijah is adjusting well. He has learned to empty the catheter on his own and it has become a normal part of life for him.

Next week, we have the MRI and the possibility of colostomy. And we have to learn how to cath him at home - something I have been dreading. So please pray for us next week as we take the next step on this journey.