Hello Friends and Family,
This is going to be a newsy, long post! So go grab your coffee and get a blanket - make yourself comfy before you nestle in to start reading. First of all before I get to the update on Josiah's doctor's appointments from the last two weeks, I wish to express from Dana and I, our sincere gratitude for all of your prayers - they have made a difference in the times we have spent with our doctors. Let me share a few examples how they have specifically helped...
Last week Josiah had his MRI at OHSU and our consult with his neurosurgeon. When we arrived for the MRI, two pediatric sedations for spinal MRI's had been scheduled at the same time. Normally when this happens, they almost always have to reschedule one of the appointments as it is difficult to pull together a sedation team at the last minute. This was answer to prayer #1. Within 15 minutes, they had pulled together a team for Josiah's sedation (also due to the fact that he had to have a specific anesthesia medicine and needed to be monitored more closely) and we were able to proceed with the MRI - praise the Lord! The MRI went well and we had Dara with us for the day, it was a neat opportunity for her to see what her little brother was going through.
When Josiah woke up from his MRI, Dana was brought in to be with him. He was laying in bed, eyes half open, totally groggy. Dana leaned over to greet him, "Hi Josiah- Hi little man... Mommy loves you." Josiah cracked his eyes open just a bit and looked at Dana and said, "Gump Truck!" For those of you who do not know, Josiah is obsessed with all things automotive, and in particular, dump trucks! It was just what Mommy needed to hear from her little guy. Josiah recovered quickly from the sedation, much more quickly than normal and we left OHSU Hospital to go meet with the neurosurgeon.
Our neurosurgeon reviewed the MRI with us and there was some positive things and some things which were of concern. 5 months ago, they were concerned that there was also a narrowing of the spine at the base of Josiah's head. Based on the most recent MRI, this is no longer a concern, it looks completely normal- Yeah God! The cyst in his spine had also not gotten worse and was generally the same. The concerning part of the MRI was that the base of Josiah's spine had gotten slightly narrower which increased the neurosurgeon's concern for pinching of the nerve roots as they move into the sacrum. The nerve roots he was referring to control Josiah's feet sensation, feet function (ability to walk), and bladder & bowel control. He expressed a desire to consult with our spinal specialist at Shriners to determine the best course of action at this point because any surgery to protect Josiah's spinal cord could endanger his spinal stability and lead to the development of neurological problems that don't currently exist. We had about 10 days to wait until our appointment at Shriners for the two of them to discuss the results of the MRI.
Answer to prayer#2. During the time between appointments, we discovered that both doctors had planned some time off, and it was going to be nearly impossible to get them together. With lots of prayer and phone coordination with our nurse care coordinator at Shriners, Dana worked diligently to make sure no balls were dropped trying to get the two physicians together. On Wednesday of last week, to our great relief, our care coordinator called us while the two physicians just "happened" (we know it was the hand of God) to be in the same place at the same time discussing another patient. She encouraged them to take the opportunity and make time to review Josiah's MRI and discuss his care- which they did. We found out today that even the best laid plans for things like this rarely, if ever happen and how miraculous it was for the two of them to have spent the time they did reviewing Josiah's file together. God was so faithful to make sure this piece fell into place prior to our consult at Shriners today.
This morning we roused the family early to get Dara to school on time (Thanks to our carpool for doing both shifts today-- (bless you! bless you). Traffic was no problem and we were 30 minutes early to our appointment. After checking in, we waited, and waited, and waited. Finally, Dana checked in with the registration staff to discover that our file had been sent to the wrong nursing unit and our "buzzer" which they use to keep patients in cue wasn't working properly. Now, if you know anything about spinal clinic at Shriners - you can be completely on time and still wait for 3 hours to see the doctor, so we were beginning to think this could be more than a three hour tour. Upon learning about the mistake, Dana began praying, and she just felt like the Lord told her there was a reason for the delay and not to worry.
It wasn't long before they called us back for the x-ray and, 15 minutes after that for our appointment with our doctor. We began settling in to the exam room, where on our previous appointments we had waited for 2+ hours to see the doctor. So, Dana began to feed Josiah lunch when in walks our doctor! We were shocked and surprised and delighted at the same time for this change in events. Now, as I dive into describing what we learned, there were two distinct parts to the appointment.
Part 1: The doctor explained that Josiah's MRI had, in general, had not changed much regarding the bone structure. He examined Josiah physically and watched him as he walked around. He was very pleased to see that developmentally, the deformity in his spine wasn't having a dramatic impact on his walking and mobility. He did bring up the concern with the nerve roots at the base of Josiah's spine and the potential for injury to them should his spine narrow any further at that junction. However, intervening on a 2 year old is quite risky because their bones aren't fully developed - they are still quite soft. Not until closer to the age of 4-5 is it much safer to consider intervention as the bones are stronger.
He stated that his desire was to continue to monitor Josiah every few months over the next couple of years and keep close watch on this with the goal being to buy as much time as possible for Josiah's bone development before an intervention was required. He seemed to be in agreement with the neurosurgeon that in fact, Josiah does have a tethered spinal cord, which normally there would be very little concern with addressing, however the structure of Josiah's spine would complicate such a procedure, putting at risk his stability unless the "snipping" of the phylum (the tendon like material which supports the cord) could be done higher up on the spine to release the tension in his spinal cord. In order for us to assess how significantly this tethering is impacting Josiah, the neurosurgeon and our spinal specialist agreed it would be necessary to have a pediatric urology test for them to evaluate what level of bladder control Josiah currently has since we cannot evaluate that since he is so young and not potty trained. At this point, he asked us if we had x-rays taken as apart of our appointment today, which we did. And this leads us to part two of our appointment...
Part 2: Our doctor left the exam room to go review the x-rays. He ended up being gone about 10 minutes. On one hand, it seemed long considering the x-rays probably weren't vastly different than last time, but I figured it was a busy clinic day and he had likely gotten interrupted. Unbeknownst to Dana and I, he spontaneously decided to ask his partnering physician for some input on Josiah's case, which became the focus of the latter part of our appointment. When the doctor came back in, he prefaced what he was about to tell us with the fact that what he was about to share with us was not to scare us in any way, but to help us gain perspective of Josiah's situation and understand some precautions we needed to consider for Josiah.
Before the story came, he made several admissions, all of which were new to us. First, he said that deformities like what Josiah has are extremely rare, a physician like him may see only one to two cases like this in his entire medical career. Which is why it makes Josiah's case so complicated to deal with. His second admission was that prior to today he had not considered Josiah's bone structure to be fragile he was not very concerned about the likelihood of his spinal column failing in any way structurally - but now he was thinking differently. With these admissions he shared with us a story from his partner's patient that had a similar style defect in his spine, although it was higher up on the spine. One day while this child's mother was at home with him, she got frustrated with him and set him down in a chair roughly to get his attention and verbally reprimand him for getting into something. When she set him down in to the chair, his spine collapsed due to the impact to his nerve cord & deformity and resulted in a permanent paralysis. After sharing this he said that Josiah's spinal deformity is lower in the spine which makes his back more stable, however, that being said he wanted to raise our level of precaution regarding normal everyday activities that could potentially have an impact to his back unnecessarily (i.e. roughhousing with dad or big sister, etc...). He asked us to specifically watch out and protect Josiah from any impact (bouncing on our knees, etc.) or falling on his back. This was and is a big change in our minds as well.
Additionally, following his conversation with his partner, he decided that waiting and observation wasn't enough when it came to watching for indications of pinching to the nerve cord. He immediately ordered a CT scan for Josiah which would provide a 3-D image of all of the bones in Josiah's spinal cord where they can visually see how much margin exists in the area where his spinal cord narrows at the base of his lumbar and beginning of his sacrum. From the urology test and the CT scan, they hope to establish a firm plan for whether or not there is any need to intervene at this point with a surgical procedure. The doctor today said, "It's a tough call - do we wait and then kick ourselves later because we didn't intervene soon enough and there was a neurological catastrophe? Or do we intervene now but then kick ourselves because it was too early and we should have waited? This is such a tough case and we need as much info as possible to make the right decisions." We will be having both of these tests scheduled in the next 2-3 weeks and then give the doctors a couple weeks to meet & talk about Josiah's results. Then we will meet back with them - probably about 5-6 weeks from now.
We are grateful for the precautions that our doctors are taking on behalf of Josiah's safety. You can imagine we are having some mixed responses at this time. It seems as if, as one of our friends so well stated, "a fuse has been lit, we just don't know how long the fuse is." We definitely see the hand of the Lord involved in our circumstances which is giving us encouragement. Please continue to pray with us for the following:
1) Supernatural healing in Josiah's body. We continue to encourage ourselves with the scripture in the gospels that states "With God all things are possible". We value and honor the wisdom and care of our physicians. We have however, not ceased to contend for God to do a miracle in Josiah's body.
2) Strength for Dana who feels the burden of being more cautious with Josiah as he plays each day and the need to watch him also for any symptoms of nerve complications.
3) That once the urology test and the CT scan have been completed that our neurosurgeon and spine doctor from Shriner's will be able to make the time to connect and review the results of the tests. We need another "meeting miracle" in this area!
Thank you again for all of your prayers and support - it means the world to us. Dana told me that when they were potentially going to have to reschedule Josiah's MRI last week unless they could find a 2nd sedation team for Josiah - she literally thought of all the people praying and knew in that moment that EVERY prayer matters and is effective. You may not know how God uses your prayers but they are ALL needed and put to good use. So thank you for your prayers and please continue to stand with us in prayer for Josiah & his healing. We'll continue to post updates as we have them.
Shawn & Dana
P.S. - Thank you to our friend, Jenifer for these amazing pictures of our boy. We LOVE them!!! Check out her website here - she's an amazing photographer!
Posted by Shawn Klinkner on Thursday, January 21