Not Great News

Today was "The Day of the Second Opinion". Overall, it went really well with the doctor. We like Dr. Hertslij very much. As expected, he will be running more tests.

First, while we on vacation for the next two weeks, things will stay the same. Elijah will have in a catheter with a leg bag. He will also begin a bowel regimen, which will require laxitives several times a day. Not fun when you are on vacation, but will allow everything to clean out and then start fresh.

Then, immediately after we return (the week of the 6th), an MRI will be scheduled. They will be looking at both his spine (finally checking for a retethered spinal cord) and his pelvis (checking for an unlikely mass). They will also be drawing a large amount of blood to run tests. He said he wanted to get a better picture of how well his kidneys are doing.

After the MRI, the catheter will come out and Scott and I will have to learn to do intermittent catheterization. This is what we feared. I'm not sure I am able, but they say we'll adjust. So this is not so great news.

I'm praying we can catch up on rest during this vacation so that when we come back, we are ready to tackle this huge challenge.

"So, did my bladder just break or what..."

This is an old picture of Elijah - when he was about 10 months old and weighed 12 lbs. (He was underweight by a lot - at one year, he was down to 9 lbs. 14 oz.)

We've really settled into a routine with Elijah. The catheter with the leg bag isn't too bad and Elijah kind of likes it. He definitely feels better and his personality is showing it! I remember when he was 10 or 11 months old, how he would always giggle and play games, I distinctly remember thinking how smart he was, because at such a young age, he could understand humor and tease us. He was always smiling and giggling.

I also remember the vast change after the surgery for the tethered cord, I remember how lethargic he was and how sad it was to watch him just lay there - how he would sleep for 20 -22 hours every day and would fall asleep even eating.

He'd gotten better since then. He'd been playful at moments and still had a legendary smile, But he also liked playing alone and often did, he'd always take a nap for several hours every afternoon and just didn't play as hard as the others.

Well, that has changed - he runs and jumps and causes trouble - he teases his brothers and sisters and wants to constantly laugh and make noise. He's so hyper, we have to work to get him to slow down and settle down a bit. Tonight he made up a song in the car: "I love you, because you love me, you a great mommy... " -roughly to the Barney tune (Repeat 6000 times) He giggled every time and gave us the classic grin I remember from the picture here. Scott and I both noticed - the old Elijah - the one we'd almost forgotten - is BACK! That feels good, even if the road to get here is rough.

Elijah is adjusting too. He was getting dressed this morning and asked: "So, did my bladder just break or what?" I said "Yeah, is it a big deal to have the catheter in?" and he said (as he was running away, "Nope, No big deal, Schmeal". And a moment later, he came back and said "Why did it break?" Not sure - so I just said: "We don't know, but it's no big deal, schmeal." He laughed hysterically and ran off to repeat the saying to his brother! I think this must be a four year old processing and understanding what's going on, but realizing that he does feel better.

Please continue to pray for him and us. This week we will meet the new urologist on Thursday and pick up our first order of catheter supplies tomorrow (hopefully enough for our vacation). And on Friday, we leave for a two week road trip through Yellowstone (visit old High School friend) and on to Minnesota to see Scott's parents, then to Michigan to see my folks, and down to Cincinnatti to see the Creation Museum and finally home through Denver, where we may get to see some other friends, although we haven't confirmed yet. It should be a good break.

Bath Day

So it's been four days since they changed the catheter and we are settling into somewhat of a routine with the foley catheter. It really isn't too bad, unless he needs a bath (and what four year old doesn't?)

We got to the point today where it was no longer a choice, it was a necessity. Well, he can't sit in the tub because of the risk of infection, and he hates the shower. So after ten minutes of scrubbing his leg with alcohol to remove the sticky pad that holds the clip that holds the catheter line, we put him in the tub with the water running and starting scrubbing. The bath itself went quick, then we had to re-assemble everything on the other leg, change the sticky pad, the clip, and reconnect it all. In total, it was a forty-five minute process to get a clean boy...who then ran immediately outside, while I was throwing away the trash from all the medical supplies. I'd say that he's a pretty normal little boy =) and overall he's been so happy.

That happiness is probably the biggest thing for us, it is such a marked change and so we can't deny that despite the fact we wish he didn't need it, it really is better for him.

Progress!

I spoke with a new urologist this morning (the one recommended by the nurse yesterday). He reviewed the notes I had sent over to his office and agrees with us that intermittent cath is NOT the way to go! He has advised us to cancel the appointment to begin training tomorrow and has an appointment for us next week (and is working to find something even sooner).

We are relieved to not need to do the training and that our instincts were right. He is also going to research other routes to help us determine the cause.

We are excited to have had a nurse that was willing to take a stand and let us know that she agreed with us and send us in a better direction. We are also thankful that the doctor was so willing to review his case and take Elijah with such short notice!

Busy Day at the Hospital

So today was Elijah's cystocopy. Unfortunately, there was no stricture. This is unfortunate because it was the last hope we had that this could be surgical. It was a long shot, but it was a chance nonetheless. On the flip side, it is good news because he doesn't need to worry about going through surgery.

They were able to change the catheter and didn't have any resistance while he was under anesthesia. They even used a larger size. All this means that when he is awake, he is clamping down so hard as to make it nearly impossible to cath him with ease. Which adds to my worries of being capable of doing this three times a day (minimum) at home starting Wednesday. I told the Dr. today that this wasn't going to work at all. He said all parents feel that way.

After he left, the nurse gave me a phone number of another urologist and recommended we go see him. She also after reading the notes and listening to the doctor agreed that this just isn't the best plan for him. I called the urologist she recommended and she is out until tomorrow. I will try again.

Over the weekend, Elijah has also developed what I think may be a neurogenic bowel. He is making messy diapers every 30 minutes. I called his pediatrician, who recommended that we go to the Emergency Room and insist on an MRI. The problem is we are simply exhausted. And the ER means a long wait with a new doctor, who doesn't want to do anything without consulting the other doctors already caring for him.

On the good news side, Elijah is so happy lately - happier than he has been since before the original tethered cord surgery. I think this is because he so much more comfortable than he was with a full bladder. The catheter has not slowed him down one bit.

Please pray that we can quickly find a neurologist to see Elijah, get an MRI ordered and find a urologist that is willing to look at the big picture and consider other options for Elijah's long term.

A "Normal" Day

We worked hard today to give Elijah a very normal day. We let him go to a friends house with Grace and Micah to play for several hours. He did well and they were gracious to allow him to stay. I gave her the five minute primer on how to empty the catheter and she assured me it wouldn't be a problem. He played well, and she was gracious enough to not panic when the catheter started leaking. It was excellent on a number of levels, mostly because it was fun for Elijah and secondly, because I got a much needed break.

When we got home, a friend from church stopped by bearing a number of frozen meals from several families. We barely know several of the folks who sent meals, but thank you all and thank you to James for coordinating and driving way out here to deliver them! I am certain they will be a blessing on the busy days ahead next week.

After dinner, we attempted to give Elijah a shower and get him cleaned up a bit. He hates being able to see the catheter - so he screamed the entire time. This was a reminder of how difficult it will be to insert a catheter three times each day beginning next week.

Tomorrow, we are going to head over to the fair (thanks to Michelle for the left over free tickets) and spend another day making things as normal as possible for Elijah and for us all.

Thank you to the many friends that have called or written, knowing that you are praying for us does help. Right now, things are very raw and new and we aren't processing it completely yet. Thank you for going through this with us.

A Long Day with Bad News

We saw the urologist today. He informed us that nothing could be done for Elijah's bladder. It will not function again, in his opinion. Although, we don't know precisely what caused this, there isn't anything that will "fix" it. So, this means that we will keep in the foley catheter between now and Monday, when they will be doing the cystoscopy. The purpose of which is to determine that the path is clear for cathertization. The doctor will change the cath while Elijah is knocked out.

Then, on Wednesday, Scott and I will begin training to cath him at home. Then, we will start intermittent cathertization three times a day. Yeah, we're not excited about this either. Although I'm not sure what bothers me more, the idea of doing it or the idea that in the not too distant future, this will all seem normal and okay. Because this isn't the normal we expected or hoped for. In fact it is very different from anything we anticipated just a couple of weeks ago.

And there are still a lot of questions, and unknowns and what ifs floating around, keeping me from sleeping.

Keep praying, besides the bladder spasms (which is what is causing Elijah to say "it hurts" about fifteen times a day), Elijah is actually happier with the catheter in, likely because it's a heck of a lot more comfortable than walking around with a full bladder. But on the other hand, he hates it when anyone asks about it.

We've had a disappointing and difficult day. We need rest, but it is hard when we have both Elijah and five month old (not to mention the other two) constantly demanding attention. And it's the busiest time of year for the business too - lots of long days and short nights.

A difficult phone call...

The nuerosurgeon called today. Her office needed to push back the appointment from August 19th until August 31st. This shouldn't have been a big deal, but it was. I told the receptionist that I was worried, because Elijah has in a catheter full-time now and we wanted to get in as soon as possible to hopefully find the problem and get it fixed. She asked me to hold. After fifteen minutes, she returned and informed me that she had spoken to the Dr. and to her assistant and they both agree that while this may be a nuerogenic bladder, it can not be "fixed". This is just something that we need to deal with on a symptomatic level. She also said that while the urologist likes to hold out hope for his younger patients, it really just would be easier if could accept this for what it is and spend the time looking for solutions rather than hoping it will all be reversed by a surgery.

Granted, this could be true. But I am not yet wanting to settle with this news. I would like to see if we can get him in somewhere else for another opinion. I want to go sit in the office of another neurosurgeon and see if they would say the same thing. I want to take Elijah to this neurosurgeon and show her his mischievous grin and ask her how long she could keep him still enough to not pull out the catheter.

But first, we have our appointment with the urologist tomorrow. I will tell him about this conversation, I will ask him point blank what the prognosis is. I will ask him to tell me just what he knows, not what he hopes.

Please keep praying for Elijah. I know that in the scope of things that people go through, this isn't the worst imaginable, not even close. I know Elijah has been through worse and scarier. I know that he's young and resilient. But I also know that "it hurts", because he tells me every day. And I know this isn't what we want for his "long-term." Thank you for your prayers.

The beginning of a plan...

So, today we didn't have any big changes, but do know what the next steps will be...

First, on Wednesday, we will check in with the urologist. He will just check for any signs of infection (the catheter can cause it) and will schedule a cystoscopy for as soon as possible. The cystoscopy is just a procedure done in the operating room under general anesthesia where they will insert a scope to see the entire urethra and bladder. They will look for anything that they can repair and try to make a plan for repairing as necessary. Some minor repairs can be made using the cystoscope; others would require a separate surgery. Elijah may stay overnight at the hospital, depending on the time of day it is scheduled.

This seems like the least invasive way to understand more of what is happening and make a solid plan. The catheter will stay in at least until the cystoscopy and at that time, while Elijah is sedated, they may attempt to change it.

For now, I have rigged the catheter bag to be shorter by finding a smaller bag and folding it in half and securing both the top and bottom with a single elastic band. Hopefully this will make it easier for him to sit on his knees and move around without it disconnecting. I also covered the clip that holds it in place on his leg with co-band, to both cover it and secure it. Elijah was happy with the results and was thrilled to find it in orange - one of his favorite colors.

Our biggest challenge is keeping him still. Until today, I thought it was okay to let him run and play like normal. However, the nurse informed me (several times for emphasis) that if it snags and is pulled out, it would be extremely harmful. There is a balloon that holds the catheter in place. If it is pulled, the balloon is designed to NOT pop, so it would come out and destroy whatever is in its path. I am hoping to find some ways to keep him playing inside and without a lot of movement - trains, legos, coloring, etc.

Thank you again for all those praying for us!

A Setback

We took Elijah back in to the ER yesterday (Saturday) evening because it had been at least 9 hours without making a wet diaper. I waited much longer than they asked me to, I really didn't want him to have the catheter again. I even made him drink a large glass of water hoping to get him out of it, but it didn't work. He let out a small amount, but not enough to avoid the inevitable. So we took him in after talking to his urologist on the phone, who insisted on us taking him in to be catheterized.

After waiting for four hours at the hospital while they searched for his size (5 french - the smallest size made) he suddenly doubled over and peed everywhere. However, they still insisted on putting it in or "we'd be back in tomorrow."

Because they couldn't locate the 5 french, they needed to use a 6 - not a big difference, but as they were putting it in, they encountered some significant resistance. This resistance is known as a urethra stricture, most likely as a result of scar tissue, perhaps from a previous surgery or cathertization. This made having the wrong size catheter a big deal, and in the end it took three nurses over 2 hours to get it in place. All the while, Elijah was in serious pain and screaming constantly.

Basically, this leaves us with the possibility of two problems. First, we still don't know what is causing the nuerogenic bladder and if/how it can be fixed. Second, we need to deal with the stricture. We'll be talking to the urologist tomorrow and throughout the week and formulating a plan for the short and long term.

This is really not where we expected to be. The decisions we'll be making will effect Elijah for the rest of his life. Please pray for wisdom and understanding and for healing.

Thank you to the Jones' for having us for dinner tonight and helping us relax a bit. We always enjoy your company. Thank you to all the friends at church who let us know that you'll be praying for us this week.