Wednesday, May 8, 2013

Changing Changing Changing....

*disclaimer... as I am still processing the day yesterday and all we learned, the easy stuff is first and the harder stuff is later... sorry! You are gonna have to read it all to get the whole picture. I don't know that I can be short today!*
The winds of change are blowing... or something!
As I said in the last post, Nathaniel had some follow up tests yesterday. We went up north again, did the walk of the tests and it was an adventurous day!
First up on the agenda (besides getting up at 3 am to leave by 4 am, droving for HOURS only to get stuck in the parking lots that northern California calls freeways and the little man who did not go back to sleep AT ALL) was a urodynamics study at UCSF.
Historically the urodynamics has been one of my least favorite deals with SB. The test usually shows that Nathaniel had a low to moderate capacity, no kidney reflux (praise the Lord!), moderate spasms, and very poor sphincter control. But then the practioners usually push surgery as a means to get dry and gain bowel control. I am have always had this bad gut feeling about that surgery for Nathaniel, and in recent years God has given me the mind set that Nat needs to make those choices for his own body. Yet Nathaniel hasn't had interest in making those choices, so I keep delaying. If there were medical necessity you KNOW we would be right in there, but if it is only social reasons, I just didn't feel it was right to undergo that major of surgery. As with many things on this SB journey, I think this is a personal and family preference and should be considered case by case. I would NEVER judge anyone for having the procedures done, and I know many who have had it that I call good friends. Please understand this is my feelings for my son.
Yesterday's test was pretty status quo. His capacity was a little down, but he was also backed up too. Which confused me a bit since we just did a clean out, so it is time to switch up his routine. He had no reflux, again Praise the Lord! And everything else looked pretty much the same as it did last time he had this test in 2010! The miraculous stuff happened after the test...
When the nurse comes in to talk is usually my least favorite time. I always feel like I am having to justify my beliefs. But yesterday was different. We talked clean out, normal. Then we talked routine. I started my usual "I am not a fan of Miralax and don't want to go there" speil and she stopped me. She said, "I know you can't stand the stuff, and I have been looking at it since you and a few others are so adamant. I am not sure I like it anymore either. I don't fully recommend it." I was floored. So we talked about natural avenues to look into, and she asked me to journal our journey so she can study it and hopefully be more informed to talk to other people about natural avenues! We have worked with this nurse for YEARS and this is the first time she has ever embraced anything I said about natural stuff! I was ready to throw a party! And then......
And then she REALLY floored me. She brought up the Ace/Malone procedure that they have been talking to me about for years. But her lead in was different.... "I am so glad you didn't have that procedure done yet. I don't think you should." WHAT???? I probably had my mouth hanging open!!! She went on to tell me that the guy who invented the surgery has invented a NEW option, and he hasn't done the surgery in a few years! (leave it to the good old USA to be behind the 8 ball...) So, SB mommas and folks, I encourage you to look up the Peristeen System! I saw one yesterday and am dancing with joy! My new prayer walking out of that appointment is for the company to get the billing code issues worked out so that families can start using this in the USA. Families like MINE! We are totally on the waiting list to get this. Hands down, the best, most thought out, user friendly system I have ever seen.
If you are interested, here is a link form the UK product page about the system:
So all in all, I left that appointment very upbeat and happy with the direction of his care in that department. So thankful and praising the Lord for YEARS of prayers being answered and doors being opened. Next up, getting to Oakland.
My map Natzi in the car didn't like HOW I got to Oakland, but I count it as a success because we got there, and we had time to eat lunch before the next appointment! This was my Facebook status about that time: "Have I ever mentioned that I HATE bridges???? Well, I REALLY SUPER HATE bridges.... I think my son just learned some new words... but we made it from San Francisco to Oakland in one piece!" And that about sums it up! Fudgle Dudgle Super Duper Evil Bridges, boats are made for water not cars!!
 So we explored Children's Hospital Oakland, and found the radiology department. Nathaniel usually ROCKS MRIs without any sedation or problems. He does really well, so this was a no brainer for me. Take a quick nap, have some pictures (MRI), grab some hot chocolate as a reward and hit the road back home. That was the plan. And it went fairly well at first. Nat did fall asleep during the MRI, so they got great images. We went to get his hot chocolate, and then I remembered I needed a note signed from the doctor's office from last week. So I popped upstairs to see if they were still there.
The practice had closed for the day, but the nurses were still there so they did the signature for me. Then one of the nurses asked if we had got the MRI yet, so I told her we had just finished. (how did she even remember me?? They have to see hundreds of families there ever week!) She told me to sit down and wait a minute. Dr. Sun came out a few minutes later and asked me to go look at the images with him. When he pulled it up, he showed me the tethered cord and the main cyst by it. We talked about that for a minute, but then he said he found something else that concerned him.
On the MRI, right next to Nathaniel's spinal cord was a row of grey round spots going from top to bottom of the MRI image. Dr. Sun pointed to them and I asked what they were. When he turned and looked at me that is the moment that my heart dropped and my world stopped turning for a few minutes. The look on his face and the words coming out of his mouth broke my heart. He doesn't know what the spots are, they could be some sort of debris, they could be more cysts of some kind, they could be something he doesn't know but whatever they are, they have to come out. But there are TONS of them. He told me that the tether release was complicated enough, but this puts a whole new spin on things. He doesn't know how long to clean all of that up, or if it is even possible in one operation. He did promise me that he would see us through this journey though. His concern and compassion give me the GREATEST sense of peace that God took us JUST where we need to be with this new doctor. As spinning as my mind was, the two things I didn't question were God's hand in all of this, and the new doctor.
Nathaniel and Faline went back to the radiology where they took a bunch more pictures in new MRIs. I spoke to the Doctor for a bit, then I went to the car and feel apart. Seriously had to have my 10 minutes of tears and fear. Then I sucked it up, hit my knees in the parking lot, called my church family for prayer then pulled my big girl panties up and headed over to be brave with the little man.
When I got to radiology, Nathaniel had opted to go in for round 2 of MRIs alone! What a brave rock star I have there. He did great again and finished all of the images without any problems. The techs told me they have seen many adults that don't do as well as Nathaniel did! When we finished there we all just wanted our OWN beds. So we got in the car, 13 hours after we had first got in it that day, and headed home. We even forgot the hot chocolate treat, as we were so focused on getting HOME. Guess I still owe my boy hot chocolate!
I KNOW without a shred of doubt that many who love us were holding us in prayer last night. I felt the love and peace all around us. We were in the midst of rush hour traffic and even though I HATE driving in city traffic, we had easy, safe travels with peace. My brain was spinning and trying to accept all I learned, but Nathaniel was at peace and fun and joking on the way home. I had an important board meeting that I was missing, but I was able to conference call into the meeting (with Faline's hand's free set so the whole car didn't have to listen to the meeting!) and get done what needed done there. I even got to laugh with my PSC family for a minute, and that is priceless. We made good time, had safe conditions and got home to our own beds. And most of all, even in the darkest moments I never lost my sense of peace. At times it was deep down there, but it never left me. Those things were all only possible because of God's grace and love, and because others were lifting us up when I couldn't. In my flesh I would have been a bawling disaster worthy of commitment!
I have NO IDEA where this journey is heading. I have NO IDEA yet what the plan is, still waiting with baited breath for the phone to ring. But I do know a few things.
First,  I know we will NOT be telling Nathaniel anything new. The answer to him is still "We figured out why you hurt and we are working on a plan to make you better." One worrier in the house is enough.
Second, I know that God will work ALL THINGS to His glory and His good. Even this. No matter how hard it is to wrap my brain around WHY a little boy has to deal with this, even this will be to God's glory and purpose.
Third, God is going to do BIG things with this little guy. After all he is Nathaniel, and that means he is a "Gift of God"!
Forth, we need ALL of you for this journey. There is NO WAY we can do this alone. Prayers, love, HUGS, friendship, acts of service, kindness and grace to understand when I just can't talk about it, we need you all.
Fifth... and the HARDEST to accept as a mommy... Nathaniel is GOD'S child, he is only on loan to us here on this earth. He was God's before he was mine, and he will be God's after he is mine too, but I get eternity with him in God's house when life is said and done here! I trust God to do great works in Nathaniel, and use him to His glory, but ultimately Nathaniel is God's to use. His life is a testimony to all who care to look deep into him.
Last night someone I don't even know asked me what 5 things I couldn't live without. It was one of those questions that made me stop and think deep about, it really hit me hard last night. But after thinking about it, I came up with my list and then I promised myself that my life would reflect that list! After all, why are we here if our life doesn't reflect the deepest parts of our heart? So my list is:
5 Things I Can NOT live without:
*God's love
*The promise of eternity with Taylor, Nathaniel and Audrey (because my children have all already accepted Christ as THEIR Lord and savior)
*And love (the ability and calling to love a biblical love - love thy neighbors, but also love thy enemies! We are called to LOVE them all.)
Thank you for taking the time to read this, and even more for praying for our family. You are all so dear to my heart.


Cindy said...

Wow, first off, your strength amazes me. You are a great example of one of my favorite scriptures:

"Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus." Philippian 4:6-7

I pray that both you and Nathaniel can keep His peace in your hearts.

Dr. Sun just sounds awesome, I think Nathaniel will be in great hands. He is indeed a very brave young man.

Guess what, we are also on the waiting list for the Peristeen system. Like you, we decided this needed to be Evan's decision to have surgery and he didn't really care. So, this system will be great.

Take care and big hugs. Maybe we can get together next week. Hugs!!

Cassie said...

It's funny that you mentioned the Peristeen system. I had not heard of it until recently. Caleb is going to the colorectal center in Ohio this summer for the bowel management program and they are suggesting this system for Caleb. It sounds really promising.