Wednesday, May 15, 2013

Discouraged and Angry

I know it's been a while since I last updated.  As quickly as things were going good it seems they went bad.  What makes it most frustrating is that it is dejavu from two years ago.  Two years ago I saw a lot of symptoms that were unexplained.  When I went to the very people who were suppose to help us (doctors), to find a cause even if they couldn't fix it, we were ignored.  They did the patronizing appointments and gave us opinions that were as good as the average Joe who is NOT a doctor.  We finally found someone who was willing to help and found the cause.  A cause I might add I already knew it was but no one would believe me.  That is until she ran tests and came up with undeniable evidence.  But as always no one is cautious with my child.  And so here we are.  After Eli's surgery after Thanksgiving, no one ran tests to check the bloodflow in his arteries that go to his brain.  This should have been a given.  But no one did anything.  In March Eli could not straighten his neck.  It was stuck.  If I knew how, I would post the video of him complaining it was stuck (being technologically challenged stinks to say the least).  Anyway, a couple weeks later he started complaining of pain at the incision site where they did the surgery.  He wasn't just complaining a little, he was complaining a LOT.  So I thought it best to get him checked out.   The general surgeon who helped with his last surgery ordered it.  While the graft area looked great, his left vertebral artery is now missing.  The surgeons did NOT expect this.  The general surgeon then called the adult surgeon who did the surgery.  He gave an explanation of what he thought could have happened, which he said the steal was so great the artery clotted itself off.  Meaning he has a massive clot it his vertebral artery.  But then proceeded to tell me that it was okay.  Um NO!!  So we got another doctor to order a test to check the left vertebral artery.  As always that doctor had no idea what he was doing (or talking about) and told us he needed a different test and we should go back to neurology.  Our question is WHY IS NEUROLOGY NOT FOLLOWING MY CHILD ALL THE TIME!!!  While the symptoms directly relating to the Subclavian Steal truely are gone, he now (ever since the neck got stuck) has recurrent headaches (none resulting in vomiting, sensitivity to sound or light, etc.), sporatic slurred speech, dizziness, lack of focus, etc.  Every single person has a different answer for what it is.  Ninety percent attempt to give a simple answer. 

I am angry and completely discouraged.  I really could get to the place of acceptance with his medical situation if a doctor was following him (someone besides the pediatrician and cardiologist), being cautious, not blowing us off because of an inaccurate opinion.  I could get the place of acceptance even if it's something that cannot be fixed.  Even if the answer is "I don't know".  At least he would be followed.  And to be completely honest, I'm angry with God for not giving us the doctor who is going to follow him. 

I could type so much more, but no one really knows what it's like to be in the position of watching your child and have them be in some sort of pain nearly EVERY DAY of their life.  No explanations, no help, NOTHING.  Everyone says to just go to a different doctor.  I so wish the answer was that simple.  But we have reached out to dozens of doctors with NO HELP.  I'm angry.

Thursday, December 27, 2012

Merry Christmas

I am so sorry I have not updated sooner.  I'm not sure what I was waiting for.  After surgery I tend to come home and get very lazy and almost hermit like.  So that is what I'm going to blame it on. 

When it comes to heart surgeries most people think of going through the sternum.  However, there are several different ways to go about correcting whatever it is that needs correcting.  Some are much harder and are strickly reserved for certain cases so most are done one of three ways.  Besides going through the sternum you can go under your arm, through your back, the neck, or the cath lab.  And I even think I've heard of a very small number of people/kids who have gone through the tummy.  Eli has had most except the tummy and back.  Eli's surgery was through his neck this time.  However, they had to use one of his own arteries because the material they typically use in adults will not last.  Not just because of growth but because it just doesn't last in kids and usually fails almost immediately.  Going through the neck can be VERY difficult to say the least.  There are just too many things that can go wrong so they don't do it often.  In fact the doctors at our children's hospital don't and have never performed the surgery he had because it's just that rare.  So when it came to surgery day, the doctors were positive there would be complications (because that's just how Eli is).  However, much to EVERYONE'S surprise (including ours) Eli's surgery went better than perfect.  He didn't even need a blood transfusion and he was extubated in the OR.  Win-Win all the way around.  However, because of all the excitement of how wonderful things went he was given a drug he wasn't suppose to get.  It was only one dose but we were a little upset nonetheless.  The doctor came in later and explained what happened, how to fix it in the future and even gave us some helpful information to take to the allergist about his allergic reaction to the adhesives that are necessary to put on him during surgeries.  He was a great doctor inspite of the error.  Also after surgery it took them a VERY long time (like 3 1/2 hours) to get Eli to our room.  To say we were a little frustrated was an understatement.  Then after he got to the room his oxygen level was only 88.  Um not okay.  His normal is 99 to 100%.  I got the nurse and they put oxygen on him, but I'm not sure why I needed to be the one to say anything.  They have monitors at the nursing station and should have been watching since he just came over from PACU.  But because they didn't order it from there they didn't see a need to watch it.  Grrrrrrrr!!  Anyway, it was fixed.  Anyway, I have several more gripes I could complain about but I won't. 

What I REALLY want to tell you about is the positive changes we've seen.  And we are not the only ones that have seen it.  Friends and family alike have noticed too.  When you are deprived of oxygen you get "spacey" and have trouble focusing.  Your memory is affected too.  Almost immediately after we came home we noticed Eli didn't have nearly as many problems focusing.  Before he seemed to be almost lost and appeared as if he had ADD (Attention Deficit Disorder).  That seriously is almost gone.  And his memory?  While not perfect (kids who have been on the heart/lung machine often have memory problems), it has improved greatly.  Possibly because he can focus, but I'll take it.  Eli does a LOT of pretending.  He has a GREAT imagination.  It really is incredible.  But before surgery it was like the only thing he could do.  I think because it didn't require a lot of focus.  And because he couldn't really keep up with his brother, he tended to play with his sister and the girl stuff a LOT.  Now, he's playing superheros and dressing in the boy dress up stuff.  He's playing cars, and anything else a boy would love to play.  In years past when he would get his Christmas presents he would be excited for them, but he would almost immediately take over his sister stuff.  This year?  He's played with all his stuff almost non-stop.  A dear friend, whom my children now call grandma, gave Eli a castle for Christmas.  It included knights and everything.  He LOVES it.  He played with it almost all day with periodic breaks to play superheros. 

Seriously I could not have asked for a better Christmas present than that.  To have my child be able to play, remember, and focus.  I honestly was not sure if he was going to be able to go into a mainstream first grade class next year.  Those fears are gone.  He will most likely still need some extra help, as Eli marches to his own drummer, but I am much more confident that he can do it.

And one last thing before I go, my cousin started a prayer page for Eli on facebook.  Since I tend to be on facebook more often you can look for periodic updates there.  Yes there will still most likely be sporadic, but they may be more often and it's easier for me to respond with people there.  I did send out one email so I hope that person received it.  Anyway the page is!/pages/Prayers-for-ELI/483014765062169   Merry Christmas all!!!

Tuesday, November 6, 2012

It's A Date

We FINALLY have a surgery date.  November 27th.  We were very shocked because the surgeon called on Saturday to give us the date (I didn't think they worked on Saturday's, or at least didn't make phone calls to set up surgeries).  I did good all weekend not really worrying or thinking about it.  Until Monday.  I had some house cleaning to do.  I was sweeping the family room and the emotions started.  I got frustrated with the inability to get the dog hair off the floor or rugs (someone needs to come teach me because I'm failing miserably at cleaning the floors).  Basically I threw a big adult sized tantrum (okay it probably wasn't that bad).  I took a breather and realized it wasn't the dog hair making me emotional.  It was surgery looming.  Then I started to panic about Thanksgiving.  My in-laws are going out of town.  We typically spend holidays with them as traveling is too hard on Eli sometimes.  But with surgery days away from Thanksgiving this year traveling would be even more out of the question.  However, my in-laws will be going on a trip (they can't change the date) and I wasn't sure they would want to have it at their house either since they will be leaving 48 hours later.  And of course I don't want to worry about doing it at my house.  So another mini-panic ensued trying to figure out what we will do for the holidays.  Thankfully we got things figured out.  My mother-in-law agreed we should have it at their house and we will just take the leftovers home since they won't really be home to eat them.  Win Win!!! 

Then of course today I start looking at the calendar and realize that depending on if Eli has any (even minor) complications he could be out of school until after Christmas.  Everyone tells me not to worry or think about complications, but for us they are the rule and not the exception.  He has pretty much had a complication with every surgery.  Some minor.  Some major.  Because of that they become very difficult not the think about.  I mean seriously this surgery is actually partly because of a complication due to his very first surgery SIX YEARS AGO! 

Waiting is the hardest part in all this.  We are glad we have the month to prepare Eli, get hubby's work situated, get Eli's schooling taken care of, and of course all the other odds and ends of preparing so such a big event.  But it's still hard.

Today I am focusing on being thankful we have a date and that God knows the plan even though I don't.

Wednesday, October 3, 2012

Light At The End?

This "journey" within our journey has been long.  And at times it has felt tortuous.  I have always wanted to be able to walk into a doctor's office, trust what they are saying, and walk out with peace that I could trust their opinion.  Unfortunately, that has not been my experience.  It takes an enormous amount of prayer not only mine, but others praying with me as well before I walk into a doctor's office to discuss Eli and what is going on with him.  Sadly, my hubby and I have realized doctor's are a trigger for my PTSD.  Probably NOT a good thing when you have to take your child to the doctor's often.  Fortunately, God has given my hubby a job that allows for him to be off on Eli's "big" appointment days without affecting the rest of his leave so he can help me when it strikes.

I was actually trying to wait until we had an official date to "update" on what is happening, but God has led me to update now.  Eli will be having surgery.  He will be having a carotid-subclavian bypass using his internal iliac artery.  The doctor who will be performing the surgery is a geriatric doctor (meaning he treats older people).  I cannot explain to you the looks we get as we walk into the doctors offices or the questions my hubby gets as he calls.  It's one of those things that we look at through this and actually makes us laugh.  Anyway, this doctor has to get permission from our Children's Hospital to perform the surgery there.  Once that happens we will have one more conference with him in the office so we can ask him questions. 

It's one thing when your child is having a surgery lot's of other's parents have been through with their kids.  It's a COMPLETELY different when there is no one to ask questions.  Right now I can only imagine or guess some things and it can be overwhelming.  Luckily I have some amazing friends who have given me "pep talks" when I've needed them to help me regain my focus on Christ and allow Him to carry me through this.

Wednesday, July 18, 2012

Ignoring My Flesh

So Eli was brought up to the team on Monday.  EVERYONE is on the same page that something HAS to be done.  His symptoms are too bad at this point to ignore.  The problem is what do they do?  Subclavian Steal Syndrome is just EXTREMELY rare in kids.  I have met one other mom with CHD warrior with Subclavian Steal Syndrome.  However, the cause for her childs was similar to the cause in adults and that was a blocked artery.  So her child's was stented.  The same thing they would attempt in an adult.  Eli's artery doesn't exisist so that is not an option.  But I already explained that in my previous post.  This is about ignoring my flesh.

When it comes to the things Eli deals with medically I can stress out.  Anyone that knows me in person and TRULY knows me has seen it and it is NOT pretty.  When it comes to dealing with doctors?  It's even uglier.  In the last couple of months my hubby has taken the lead on talking to the doctor in between appointments.  This was completely planned by my loving Lord and Savior and I am so very grateful for it.  Since he has been the go between it has been so much easier to fight my flesh.  I'm the type of person that I need to understand things (at least when it comes to Eli's medical stuff, NOT about technology as that is another matter altogether).  If I was still the one calling I would be a basket case right now.  Don't get me wrong I still fight it (a LOT).  But right now when things come up I'm able to say to myself "Jesus has this".  There is a HUGE sense of peace that God is dealing with this.  It's all in HIS timing and NOT mine.

So I have to ignore my flesh and let God work out the calls. 

The dates. 

The decisions.

The outcome.

I think about it. 

I start to get lost in what "might" happen.

But then I remind myself God has this.  HE brought us to Swedish from our former cardiologist office.  HE has the doctor talking with not just the doctors who will do the surgery, but other doctors who work on adults (as this is an "adult thing").  My husband has so lovingly reminded me of the peace he feels that God is leading us in the direction that is best for Eli. 

In the meantime, I will continue to ignore my flesh and let HIM lead.

Monday, July 9, 2012

Call From Cardiology

So my husband came home from work and the first thing he said was "oh good at least your sitting down".  Those are NOT the first words you want to hear when your dear hubby gets home.  He went on to explain that the cardiologist called. 

On Monday July 16, 2012, Eli's cardiologist will take him before the surgery team to discuss his subclavian steal syndrome.  He apparently has been going back and forth with some other doctors and gathering data to present to the team.  There are several options and things to consider.  Of course they always go from the most invasive to the least invasive.  The most invasive is of course is full on heart surgery.  This would be very risky since what they would do is bypass surgery.  They would take an artery from somewhere else and put it in the spot where Eli's artery doesn't exsist.  This is where Eli's original heart problem is though so if his aorta recoarcs then the vessel could tear and kill him almost instantly.  This is EXTREMELY risky and most likely NOT the way they will proceed.  Another option is to tie off the left vertebral artery (the artery that goes to Eli's brain that now that is stealing the oxygenated blood from his brain).  This apparently is normally done during the original surgery, but for some reason they skipped this step (this has been said to us more than once now).  The problem with this is that Eli has to have enough "collateral" vessels in order to supply his arm with oxygen.  Otherwise he would end up loosing his arm.  And the last option is to go in and put basically the opposite of a stent.  Instead of opening it up it would reduce the amount of flow that could go that way. 

In the end the thing that worries me the most is what affect will whatever they choose to do have on his heart?  I honestly 100% believe when they change the pressures of how the blood flows to his brain and arm it WILL change the pressures in his heart and the word "stable" will be on hold for a while. 

I can tell you I'm REALLY glad it's VBS week at our church.  I truly am needing to be around my fellow brothers and sisters in Christ so I can be brought back to His feet through this.  Prayers would be appreciated.

Saturday, June 16, 2012

Auditory Processing Disorder

A while back during speech therapy for Eli, his therapist (an SLP) informed me she believed Eli should be tested for Auditory Processing Disorder (APD).  We had talked about this before, but she is not the type to just jump into these type of suggestions unless she is sure.  So we waited for quite a while.  The week prior to her making the suggestion she had gone to some updated training on the very subject.  While there her mind kept going back to Eli.  He displays all the symptoms.  Plus apparently kids who have injuries to their brain where they lack oxygen are at risk for this.  It can mimic ADHD, but is NOT the same.  The problem with getting tested is there really are not a lot of qualified people to conduct the testing (at least not local).  1) Only a qualified audiologist can perform the test.  2) They must be a certain age to test for it.  (Eli's not old enough yet since one place is 7 and another place is 8 and he will only be 6 in a month.)  3) There are only certain places technically qualified to test for it.  Surprisingly, the one place people would think is qualified, it was recommended NOT to go there by both the school district and his SLP.  4) The test cost over $1,000 just for the test and they do NOT bill the insurance.  I don't really want to go through that.  5) We wouldn't be able to do the therapies through them because they are too far away, plus again they do NOT bill the insurance.

Personally I don't need a diagnosis just to have a diagnosis.  I don't believe getting an "official diagnosis" will change our lives.  He will still be in speech.  He will still be on an IEP.  And this is NOT something that will require surgery like the subclavian steal syndrome.  One of the great things about his teachers is that they completely agree that he has this.  I actually asked the SLP and his teachers at school about one of the things that is suggested for kids with APD.  It's basically an amplification system (is that the technical name?) that the teacher basically speaks into one piece which goes into an earpiece the student wears.  You can have one student, multiple students at the same time, or an entire classroom set up.  And he can have this if we think he needs it.  His teachers (including his SLP at school) also mentioned that at some point we will need to focus on strategies to help Eli cope once he is not able to improve.  They aren't giving up, but it may be a possiblity down the road.  (Can I just tell you how AWESOME Eli's IEP team the last two years has been.  I'm seriously going to miss them.)  So really getting a diagnosis is not really necessary. 

After doing some researching on the subject of APD, I discovered that some people who have APD use a combination of ASL and verbal speaking to communicate.  Because people with APD struggle with verbal memory, the visual "stimulation" that ASL provides helps them remember what is said.  I started to try it with Eli.  And it works.  They actually use it in school with him as well.  So I can obviously see it's not in my head.  Luckily for me a very dear friend wants to eventually help families like me who really need to learn ASL.  She has been in school learning ASL for a while.  It also helps that her daughter is hearing impaired.  I am ever so grateful to my friend for helping me learn.  And am actually thankful I get to be her "guinea pig" as she goes on her path to realize her goal.