jewelz

Nov. 1st blog:
We have news!! We have awesome news!! Awesomely wonderful news for ya'll this fine day (BTW, Can you tell I finally got some sleep last night? )

The Children's Hospital in Seattle called Ryan back last night...he spoke with a Nurse Practitioner that is with the Chiari Clinic for quite some time. She let Ryan tell her everything that has happened to date with his symptoms, the results from the MRI and CT scan, his doctor and ER visits without trying to cut him off or hurry him in anyway... When he was finished the FNP explained to Ryan that with the amount of herniation of the cerebellum into his spinal canal he MORE than meets the standard used to determine if someone has Chiari that requires surgical intervention, like by half again as much! She also confirmed that at this point with the type and severity of his symptoms that without surgical intervention that he will continue to get worse. So...on Monday they will be contacting him again to begin making the arrangments to get him in to start this process. The Nurse Practitioner told Ryan that it wouldn't be this week most likely, but the week after that when they could get him in and that the first step will be a physical and an additional MRI of his spine to go along with the one of his head.

At this time I don't know if they intend to just get him there and get him into surgery right away, or if it will be additional time until they will actually do the surgery but should know more at the beginning of the week. Ryan and I have a list of questions for him to ask when they call him back...starting with whether they will be doing the surgery right away once they get him there, how long do they expect him to be in the hospital to recuperate, what type of post-surgical follow-up and recuperation time they generally see, etc. I will keep updating my blog as we find out more, but for now I am just happy to have some confirmation that they will be helping him at the Chiari Clinic.

It's funny, but everytime I seem to forget that things happen for a reason the universe sends me a whack upside the back of my head to remind me! I'm so grateful now that the Neurologist in Spokane sent him home without helping him on Thursday...we never would have found the Chiari Clinic at UW if it hadn't have happened. He will be in much better hands with these people, they have performed literally hundreds of these skull decompressions on patients from all over the western half of the country.

Flashmo will be home Tuesday for a week, and I'll get to see him again at Thanksgiving for a week or so as well...Then he's heading back to Van Nyes until Christmas time. I'm so excited that he will be home more this month, and am holding on by the skin of my teeth to get through until he finally gets home from California...the job will have run six months by the time he finally makes it home, and way back in the very beginning of all of this it was expected to be an 8-week job away from home. I was so relieved to hear Flashmo tell me the other night that he would be home at the 1st of the year whether his employer had local work for him to do or not that I literally broke down and cried on the spot! I was starting to get to the point where I had given up hope that he would ever come home and I just really needed to hear him say that. I hope they have something for him to do, it would be a shame to waste all of the effort he's put in over the last year in hopes of moving into the management aspect of his work but at the same time you have to draw the line somewhere... six months of only seeing each other a few days a month is a really, really, really long time. The good news is that local commercial construction is WAY busier than it was a year ago with a $400-600 million plant that is under construction in Pocatello, along with various other small to medium sized jobs and he can sign book #1 at the hall now after having finished his one year of work in the local area requirement.

Thanks to my dear friend Pisces101 for explaining how to find the Friends threads and new announcements area on SG...cuz I was just getting ready to throw my hands up in the air and walk the fuck away! GAAAAACKKK!! Also for everyone here that has stood by our side during all of this stuff going on with Ryan, I wanted to say this:


We love you!!!
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October 30th blog:

Most recent update...
The remainder of today was a freakin' rollercoaster ride...that's all I can say! Ryan's appointment this afternoon was a HUGE disappointment....I mean HUGE. The doctor spent less than three minutes with him after telling him that they wouldn't allow the Skype or the phone, and he wasn't nice to Ryan at all...The doctor put his MRI up on the viewer, told Ryan that there's no doubt that he's got Chiari...the cerebellum "tonsils" are clearly visible extending into the spinal canal, but that since he can still see spinal fluid getting past the cerebellum tonsils that Ryan's not a surgical candidate and that he just can't help him at all. Uh...can you say WTF?? This is the exact same doctor that had already seen those films and personally went out to the scheduler to have her work Ryan in within 48 hours...and told him that it was a bad situation but not to the point where it wasn't fixable. You know what I think happened?? Drumroll please.....All I can think of that would have so suddenly changed his mind about the urgency of Ryan's situation after already seeing his MRI is that he most likely just realized that Ryan is a Medicaid patient! It's the only thing that makes any sense...I just don't think he wanted to perform that type of surgery for what he probably considered to be a too much of a discounted fee. So...as you can imagine Ryan was pretty upset, as was I.

I spend the afternoon researching treatment options, and other surgical hospitals...called Medicaid to see who they might have that will accept their payment for Neurologists, etc. and finally happened to stumble upon the website for the Chiari Clinic at the University of Washington! The Clinic is affiliated with HarborView Medical and the Childrens Hospital in Seattle, and the Neurosurgeon there has performed hundreds and hundreds of these procedures. Ryan and I both called this afternoon...and they called Ryan back a couple hours ago and said that they would get him registered as a HarborView patient and gave him the information on what they wanted to see so that they could determine if they could help him. They told Ryan to send or have sent his CT scan, his MRI, and the radiologist's report, etc. to their team to review...Oh, and they already know he has Medicaid for his insurance and it didn't seem to bother anybody! WHOO-FREAKIN'-HOO!! I dunno...seems to me like it was almost a divine intervention of some sorts right about now. The Spokane doctor who's not likely to have EVER performed the surgery that Ryan needs all the sudden tells him that he won't help...on the very day we find a Chiari Clinic at one of the finest teaching Hospitals in the country So yeah...definately a rollercoaster today!

And...my honey is coming home on the 4th for a week! I'm so thrilled to see him This day didn't turn out as expected, but it turned out OK after all. Back to waiting for a little while...I just hope they won't take very long to make a decision!

Earlier on the 30th:
Chalk up another sleepless night for Jewelz

Today we should know, Ryan's appointment with the Neurologist is this afternoon. I'm so grateful for that, as he has become progressively worse since last Thursday or Friday, I don't know if he could have waited much longer to get in to see the specialist.

Ryan called the Neurologist's office yesterday to see if Sarah could bring her laptop in for the appointment, so that they could bring up Skype and allow me to "be there" with him. The nurse had to ask the doctor if it would be OK with him because it's such an unusual request....I am not sure if he got his answer yet or not but he told me that if they didn't want to allow the Skype, he was going to request that he be able to put the doctor on speaker phone so that I could be there that was instead. He really wants me to be able to be apart of this with him, and it would certainly make me feel better as well. I'm sure that there will be questions that he won't think to ask...and I've got a list started already with mine.

He's scared...as am I but being the Mom means that I can't let him see that I am frightened by all of this. In the last few days, he's been calling every couple hours for some reassurance that things are going to be OK and I will spend however long it takes to leave him feeling better and then the cycle starts all over again... It's one of the most difficult things that I've ever had to deal with but I've no option but to be strong right now because there's no one else to do it for me and I love him so much. The topic of how you find the strength as a parent to do things like this has come up a lot recently and all I can say is that you find it somewhere, because you have to. Simple as that...

Since last Friday, his headaches have become just relentless and his other neurological issues have become more frequent and difficult for him. He tried to explain it to me a few nights ago by saying that he felt like his senses were on fire...sights, sounds, movements and just general atmosphere of where he is makes a major difference for him. He's not been able to work at all this week after trying to go in on both Monday and Tuesday for his shifts. As soon as he hits the call floor it triggers his symptoms and he becomes dehabilitated by his headache pain. When I talked to him yesterday, he said that now when he closes his eyes he see white flashes of light and that it doesn't stop...he just has to knock himself out to get any rest. His work has been very cool about it considering that he just started the job about a month ago...they are giving him six weeks short-term disability leave for now so at least for a little while he doesn't have to worry about whether or not he will have a job when he gets better.

Once we see the Neurologist today we can start making some plans for how we'll have to deal with this...I am trying to get all of my ducks in a row so that I'd be ready to hop on a plane and be there next day if he needs me to be. Flashmo's boss was good about it, he said he could get Flashmo on a plane out of Van Nyes in about 48 hours and if I have to leave sooner then that our daughter can stay at the house with the dogs till he gets home. We're not sure if Ryan is going to need to move home, or if he can just be helped with support where he is for a little while until he can get back on his feet...right now Ryan keeps vascillating between thinking that he wants to come back to Pocatello and wanting to stay in Washington and I don't know if he should be making that decision just yet. I've promised him that we will be there help him through this because it's just the right thing to do and I don't want him to be wasting his energy worrying about how he is going to pay his bills right now when he needs it to be getting well. He had actually been doing a great job of being on his own until this happened especially considering that he was just 16 until a few days ago...he doesn't have much for bills anyways, maybe $300-$400 a month tops for his rent, utilities, phone and helping Sarah with her gas since she drives him everywhere and that's it. They are receiving food stamps for now, and he's on Medicaid for his insurance so if we can just help him to keep a roof over his head for a little while he should be OK. Honestly, I think helping him stay afloat there would be better and easier for several reasons...he's going to be able to receive better medical care in Spokane than in Pocatello, he's already got Medicaid in place in Washington, he wasn't happy in Pocatello to begin with and Sarah would not be able to come with him. I'm planning to speak with his two aunts in Spokane, and his Grandmother to see what type of assistance they would be able to give Ryan during his recuperation period and as long as I know he's going to have help there when he needs it I think that's going to be the best option. Spokane isn't that far away from us, we could be there if we needed to be within a day's drive.

Thank you everyone for your prayers, thoughts, hugz, well wishes and messages of hope and encouragement...they have really helped a great deal. With Flashmo so far away, my time on SG while I wake up and at the end of the day has really been instrumental in helping keep me sane this last week or two and I've been able to borrow some of that hope you all have been so kind as to leave for me here I know that some of you have been blogging about our situation as I've been having people that I do not know stopping by here as well....thank you for that too! We could use all of the positive vibes and prayers we can get right now. I've been trying to respond to as many messages as I can, but know that if I do not get to you that your message has been read and appreciated more than I can say.

Much love to you all

October 28th blog:
As a parent all you want to do is to keep your child safe, well and happy...and it appears that my worst nightmare has become a reality.
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Ryan had a long weekend this weekend, he blacked out Friday night (Saturday morning) and had to be taken to the Emergency room and had migraines most of the weekend as well. The headaches have gotten so bad that they completely dehabilitate him when they hit...even the slightest sound, light or movement is unbearable for him. He had gotten another headache at work yesterday, almost as soon as he stepped out on to the call floor and tried to call the doctor's office to let them know what had been going on with him since Friday...the nurse got on the line right away, and before he could say anything about his headache she said "Can you be here at 2:40pm?" He asked her if she could tell him anything about what was wrong, and she just repeated the statement that they needed to see him in the office right away.

Ryan called me about about 4:00pm my time, or about 30 minutes past when his appointment was scheduled for. The doctor told him that he has an extremely rare condition called a Chiari malformation; it is a malformation of his brain and skull that causes actual brain tissue to be pushed down into his spinal canal. As it would turn out, the radiologist had called on Friday as soon as she read the MRI because it showed that his tissue was past where it should be and she felt that the severity and emergent nature of the results warranted an immediate response but his doctor said it was too late in the day Friday to get him in. The condition is so rare that his doctor didn't really know anything about it as far as treatment options or prognosis are concerned...he told Ryan that they spent maybe two minutes covering Chiari malformations in medical school; he was way out of his league with them and is trying to get Ryan into see a neurologist ASAP. The doctor did say that the headaches Ryan has been having are the most common symptom of Chiari, and I was happy to hear that the doctor finally gave him Hydrocodone and Neurontin to take for them.

As soon as I got done talking to Ryan, I googled Chiari right away and found the Mayo Clinic web site's information on the topic. There are several types or classifications of Chiari, they are catagorized based upon the way in which the skull is malformed and the severity of your symptoms. Every single symptom Ryan has been having over the last few months was included...the headaches, dizziness, loss of vision or other vision disturbances, unsteady gait, loss of coordination with his fine motor skills and even the black-out episode from Friday was listed! The website said that it is a congenital disease that most people are just born with, that often Chiari does not manifest itself with symptoms until adulthood. It also said that there are some people who are able to live a "normal" life with just monitoring and medications, but that with more severe cases the most likely treatment is surgical intervention. I guess we will know more as soon as he can get in to see the Neurologist, but the one thing that we do know is that once it becomes symptomatic that Chiari will continue to progress if it is left untreated.

Flashmo and I are just stunned, and deeply saddened to hear this news. He is going to try to see what he can do to rearrange his schedule in Van Nyes so that he can get home and relieve me with the dogs and house stuff, and I will be making a trip to Spokane as soon as I can. Our daughter said she could stay with the dogs too if need be, and my boss was really awesome about it yesterday when I told her that I'd would be needing some time off soon to go. She was just like..."yeah, take whatever you need, no worries" about it. I wished so badly last night that Flashmo was home to hold me...I just sobbed and sobbed and sobbed uncontrollably when it finally hit me last night. I'd been in a state of shock for awhile after first receiving the news, almost numb. I was still at work, and just went on auto-pilot until I could get home and once I did that's when I fell apart. I just couldn't blog about it last night, I'm sorry. I know that Flashmo posted a blog a little later in the evening, with some incredibly powerful images of an amazing kid as he grew up...I couldn't sleep last night and after awhile of trying I got backup and logged on for awhile, when I saw Flashmo's blog I just lost it all over again. I ended up crying myself to sleep eventually and I'm actually grateful that I did because I'm sure I would have been up for most of the night if I hadn't.

The worst part of this for me is feeling so useless right now...Ryan is so far away and he was just unconsolable last night. I don't blame him; this is a lot for a 17 year old kid to deal with especially considering he already has type 1 diabetes. I was so fuckin' pissed when I found out that my mother-in-law felt the need to tell Ryan about a family friend who had Chiari that has had nine surgeries already and still feels like hell, she's never been able to hold a job since she started having symptoms, lost her kids because she couldn't care for them etc. and he was just a mess after he talked to her. If she was here, I'd punch her in the throat for being so stupid! I was able to calm him down after a little while...and was able to get him to see that just because Angie has those problems with her Chiari doesn't necessarily mean that his fate will be the same. He felt better knowing that his father and I were working on figuring out a way for me to get there to be with him, too.

Thank you everyone for your prayers, your positive thoughts, interwebz hugs and all of the other support and love you've given to our son and to us...I just can't say thank you enough!

Much loves to you all~
Julie