A Good Thursday!

Elijah's catheter was removed today! It was supposed to be removed for five hours and then replaced. However, Elijah surprised us all by urinating normally while it was out. When they did the bladder scan, he had only a small amount of residual. The doctor said he fully expects to see us return in less than a week and need to replace it, but I'll take a reprieve for now.

In two weeks, we have an appointment for another scan and a catheter clean out at a minimum.

We are also ordering a watch for a Elijah that will remind him to use the potty on a strict schedule. If he begins to retain again, we are to take him immediately back in.

Despite my pushing, the urologist was not willing to order the MRI. But I was pleased with his reasoning. He said that if he ordered the MRI and it did not show a tethered cord, we might not get a real evaluation from the nuerosurgeon. He feels strongly that it is nuerologically based and would like to pursue that further. At the very least it is the left over side effect of the original tethered cord.

Thank you for your prayers, we'll rest well enjoying this short break!

(In the picture you can see the cath bag tied to his ankle-this was so my mom could see how big it was.)

Day One Down

The testing today went pretty smoothly. I'm anxious to get the results tomorrow. When we first arrived, Elijah's catheter bag started leaking, so I had to make an unexpected stop at the urologist's office to get it changed. Then, we went back down to the diagnostic center for the ultrasound.

Elijah was wonderful and laid very still on first his tummy, then his back as they took lots of pictures of his kidneys. The tech could not give me any information, of course, so I don't know what it means, but it looked like the right kidney measured a good bit larger than the left. She also kept measuring a bunch of smaller things, I asked what they were, she didn't really answer - just said there was fluid there and it needed to be measured. Then she left to "go talk with the doctor" and came back and said they wouldn't be running the other tests today; but she did say that Dr. O'Halleran would have the results before our first appointment tomorrow, which is at 8:30.

Thanks for your prayers and a special thank you to Cathie Reyes who has been helping more than you can imagine by having Grace and Micah on both Monday and today. You're the bestest, Cathie!

Wednesday

So today is supposed to be a day of testing for Elijah. Mainly an ultrasound. They'll try to get a good look inside and see what is going on. They'll also try using the catheter to fill and empty his bladder I believe this is to see if it stimulates any spontaneous contractions. The urologist didn't hold out high hopes for this, but it's a step he has to try in order to keep moving forward.

I slept fitfully last night, kept spinning my brain trying to figure out how to get him in front of the nuerologist. Praying that a door will open. Anyone have intimate connections with a pediatric nuerosurgeon? I'm not certain that it is nuerosurgical - but I'd like an MRI scheduled to rule it out. So at least we know. The first time we went through this, no one thought it was a tethered cord, it was discovered by accident. But that accident (miracle) saved Elijah's life.

On Monday, Dr. Wehby's (neurosurgeon that performed original tethered cord surgery) office started the day saying she couldn't fit me in for six months, then later in the day decided to work us in on August 19th, but said they didn't think it was nuerosurgical - that the type of tethered cord that Elijah had Never Re-tethers. This is confusing, since right after his first surgery, they told us that we would need to do an MRI every 12 months to watch for re-tethering. And it is these inconsistencies that have me wondering if we are missing something that could give us the answers.

Thanks for your prayers - they are appreciated.

Oh and I want to be sure to give credit to Visual Empathy for the bottom photo above - thanks Kristina!

Fighting for Elijah

For those of you that have known us for a while, you know that Elijah is a miracle. Just before his one year birthday, his bladder and bowel stopped working and it took three days in the hospital, before doctors could tell us what was wrong. In the meantime, he lost use of his arms and legs, and his bloodwork showed signs of his liver and kidneys shutting down. Then they found the problem - a tethered spinal cord. Apparently, Elijah has spina bifida, but since it was a closed defect, we didn't know until the cord worked its way in a knot around his spine, and as it pulled tighter, the nerves were prevented from doing their job. However, in Portland, Dr. Wehby was nearby and able to perform surgery to sever his spinal cord and set it free. We had about a 30% chance of him gaining back the control he had lost. But he did - everywhere except his bladder. His bladder worked on an overflow basis, when full, the extra would just flow out. He couldn't potty train, but it was do-able.

Until Sunday.

On Sunday afternoon, Elijah began screaming and didn't stop for three hours. I took him to the Emergency Room because I didn't know what else to do. They thought his appendix or maybe something else had burst and "fast-tracked" him straight back and he was seen in a matter of minutes. And within five minutes they were doing an ultrasound, which quickly showed the problem. His bladder was full - like so full it was holding 2-1/2 times what an adult bladder should hold when it's super full. His bladder had stopped working all together.

After consulting with Elijah's urologist, the E.R. doc put in an indwelling (long-term) catheter. Unfortunately, these things aren't made for children and the bag goes from his ankle to his thigh! He will be wearing it permanently for now. Except I'm not okay with that. Mainly because it's a neurogenic bladder - meaning something neruoligically is not telling the bladder to work - so I want him to be evaluated by a neurologist, but the nerouolgist who did his original surgery is on vacation, so we have to wait, but if we wait and he gets worse, it can be too late and the damage can't be reversed.

So pray for us as we fight for him - to find answers and keep this from being permanent. and pray for Elijah that he can understand and enjoy every day despite all the changes he is having to endure.