Saturday, April 28, 2012

Dead Ends in Crazy Town

Where to start?   Let's start with Shelbie and our latest hospital shenanigans.  The actual transfusion on Tuesday went okay other than dealing with some low blood pressure, really low, and a small bout of nausea, she slept through it.  We came home, she slept.  She kept sleeping for 23 hours!  Yes, 23 straight hours of sleep.  I thought, Finally, a transfusion without side effects!  I guess I spoke too soon because by 10 Wednesday night, the headache started.  It was bad right from the start.

We did our usual routine, wrapped her head in ice packs and loaded her up with pain meds.  I had so much hope that she would get through it without a hospital trip.  Not in the cards!  She was up all night and I only slept about 2 hours.  Finally, she could take it no more and I took her in to the ER about 6am.  Again, I hoped that the meds from the ER and fluids would give her the bounce she needed to turn the corner but things were bad all day.  We have got to figure out how to make these transfusions easier on us all!

Now Sam!  Shocking news!  All the biopsies came back negative!  I was floored, shocked and amazed. The pictures taken in the procedure show all sorts of ulcers and inflammation yet there is currently no explanation for the problems.  No sooner did we get home from the doctors on Wednesday and Sam gets slammed with pain, and the other weird symptoms.  I don't get it.  Clinically, he has all the symptoms of Colitis and visually, his Duodenum looks abnormal like someone with Celiac's disease.  So, back to square one and I have no idea what the next step will be. 

The nurses at the hospital always joke with me that we need a gold plaque on our 'room' up there since we practically live there. (Seriously, my neighbor told me that when she wasn't getting anywhere last week trying to track me down up there, she finally told them my name and she felt like I was a movie star and people started helping her out!  Funny)  Well, this week, we came close to our own room...they asked me if I would help them decorate the new Infusion Therapy wing! They had a big open house tonight so we had 24 hours to pull it altogether for the big event.  Nurses were bringing in accessories and art from home and I went around placing the stuff and trying to make a hodge podge mess look nice.  I also followed the maintenance guy around and helped him hang pictures, wreaths and other items.  I am meeting with them tomorrow to propose a new plan since everyone will be taking their belongings home. 

Since my own home sucks as far as decorating goes because I don't have money to spend on it, our home away from home will soon be classy and comfortable!  Ahhh....
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Thursday, April 26, 2012

Maybes and What Ifs

I don't usually compare my life to other's life.  I don't usually think about just how extraordinary we are but lately, those seem to be the thoughts that consume my mind.  I'm not sure it's a good place for me to hang out. 

On Sunday, as I looked around the congregation, I became slightly jealous of all the healthy, happy kids I saw.  A little jealous of the new babies, a picture of health.  A tad envious as I heard the girls talking about their college plans, footloose and free, nothing holding them back, good health and grades that will get them into any college they want.  Families with a mom and a dad at home, stable finances, support,  dancing classes and t-ball along with packed calendars of all the other possible activities most kids participate in.  They send them off and never worry about things like, I wonder how long it will take for him to recover from this exertion, how many germs will they pick up, or I wonder if his heart will give him pain tonight and a million other questions pertaining to their poor health. 

Don't get me wrong, I wasn't resentful or even angry and I am usually happy and excited to see the accomplishments of other kids, my friends, whatever, which is why the jealousy and sadness I felt really caught me off guard. 

Monday night was High School registration.  We were having a disasterous time trying to do the online registration, mostly because I missed the meeting, the memos, everything because I was taking care of Sam last week and was consumed with that.  In a fit, I called the school at 7pm and a counselor answered which was a total fluke!  She told me to come down and they would help me, for which I was so grateful.  It was hard to have the Vice Principle go through Spencer's grades and classes as he helped us get the classes Spencer wanted. I'm sure he was thinking what a poor excuse for a mom I was.  It was hard to read the new guidelines for course selection so that they can get the most out of their education before starting College.  I guess I've been too busy studying other things, not college entry requirements.

As we sat, staring at all the C's and D's on Spencer's transcript, I felt bad for him.  I feel like I've let him down.  Maybe if I could have been there more for him, supported him more, prodded more, he would have better grades.  Maybe if he didn't miss half a trimester due to illness, he would have better grades.  Maybe's and What if's will kill you, if you aren't careful.  I feel badly that the life we have is such a bully.  It sucks out our energy, our hopes, our dreams and makes us all tired, too tired to even think beyond tomorrow let alone the future.  I see that in Spencer.  I see that he has been worn out for so long with health problems that school hardly matters anymore but at the same time, I see him daring to dream.

He's been looking at University of Washington as a place to go to school.  He has already researched about tuition, grades, etc all on his own.  After Monday night, he said, "Mom, with these stupid grades, I'm not going to get in anywhere! Why bother at this point?"

So, he's feeling a little beat up these days.  Aren't we all, but in our usual fashion, we will pull up our boot straps, find our happy face and keep on truckin.  There's always something to bother with even when we think there isn't.  If Spencer were to get a grade on the way he lives his life, I would give him an 'A'.  A solid 'A' with a plus for being kind, graceful in his trials, helpful and willing to take on any hardship that comes his way.  All my kids do!  I guess we need to stop thinking in terms of school being the end all and be all of our existence and not every grade matters and we will never be like everyone else.


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Tuesday, April 24, 2012

Memory Lane

Here we are...at the hospital...again!  Shelbie is having her transfusion today.  They got a late start, IV was hard to get in, nausea, pain, the same old song, just a different verse on a different day.

They moved short stay therapy up to the second floor which I thought would be a nice move, and I guess it is.  The rooms are more spacious and a little brighter though I'm not sure why because there aren't any windows up here either.  There is one strange thing about being in this new space, it's the old ER. 

As we walked down the hall this morning, past all the old ER rooms, both of us started to feel sick as sad memories filled our minds.  We passed the room where Shelbie had stopped breathing when she was just two weeks old; I will never forget that day! Ironically, it was also the room the Ambulance rushed Shelbie to when she was 2, seizing, unconscious.  We passed the room Spencer was in when he got bit by a snake on his 8th birthday, the room where he laid after getting beat up and left in a gutter.  Then, the room I carried him into when he was 8, his body seizing, unconscious.  Encephalitis.   Shelbie remembered how I left her beside the parked car, expecting her to follow me in as I screamed for help to save my little boy. A man took her hand and calmed her fear as he found me down the hall. I remember none of that.

Gosh, these walls, these rooms, how can these memories still be here?  It's as if I just walked away from them, leaving them unattended for these walls to take care of.  Here they are, safe, untouched, as if it was happening again in this moment, nothing has changed.

 These memories should be safe in my heart somewhere.  Each moment I have watched my kids struggle to stay in this life are moments that tore through my heart, ripping and tearing.  I wanted no part of it yet that was never a choice for me to make so I compartmentalized each event.   Creating a place for them to stay so I would not have to remember them, the heartbreak. 

Now today, like a wall of water, my personal tsunami, they appear; ghosts from the past.  It's been a tough week emotionally, I didn't need this.  First Sam, now Shelbie.  Her blood pressure has dropped to dangerously low levels, I should be worried, maybe panicked but I'm not. What more can I do?  Wait it out, wait for the plasma to fill up her veins, wait for her body to welcome it.

Life can be so rude. 




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Saturday, April 21, 2012

Holding On

Well, I've been trying to compose a post now for about an hour but I can't seem to keep my train of thought.  It's been an exhausting day trying to get caught up from this past week and get ahead for the coming week.  It's shaping up to be another big one. 

I am anxious about getting Sam's results and the genetic results as well.  The doctor wants to scope Spencer because he too has so many GI problems but I'm not sure when we will tackle that.  Spencer has been doing pretty good, better than he has been.  I am hoping that the Chrohns meds have been successful at stamping out the inflammation. 

As soon as I get the genetic tests back then we schedule the next round of testing.  If genetics comes back positive for POLG then we start the lame treatment for that.  I say lame because there is no cure, just a few medications that will help support them.  If the test comes back negative then we have to make another trip back to Seattle for muscle biopsies.  The kids are also way past due on bone marrow biopsies so we have that coming up soon.  I will wait until school gets out just because they have already missed so much school. 

Ohh....sometimes, this feels really close to crazy and unbelievable.  It just never seems to end but I am holding on to hope that things are going to get better soon.    
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Friday, April 20, 2012

Relief, sorta

Sam survived the upper and lower endoscopies yesterday.  The poor guy had to wait until the very last case of the day so it made for one long day.  He was able to sleep the entire morning away but the afternoon he was very anxious and I could not get a smile out of him to save my soul. 

At the hospital, he laid in his bed with his head bowed and his eyes closed.  He was taking deep breaths.  I said, "Sam, you are meditating?"  He shook his head no.  "Are you praying?"  He shook his head no.  "Are you sleeping?"  He shook his head no, "What are you doing?"  He wouldn't answer me. 

It was the strangest thing I have ever seen him do.  When the nurse came in to ask him questions, his response was barely audible and he never lifted his head or opened his eyes.  She was really nice, tried to involve him in starting the IV, wrap the coban and all sorts of things but Sam would have nothing of it.  He just laid there with his head bowed.   Sometimes, a tear would escape his eye but he never really broke down in tears.  It was almost worse to see than a big old tantrum of fear which I probably would have rather had since at least it would have been an expression of something rather than this flat, dead look.  I fought the tears the whole time because it was the saddest sight.

Everything went well, except I was a bit miffed with the Anesthesiologist at first.  He was a new guy and when I asked him if he had spoken with the docs at Seattle Children's he said, "Well, I saw the note but I think we can handle it so I didn't bother to call."  I wanted to tackle him to the floor but remained calm instead.  The nurse actually handled it quite well instead.  She said, "Sam has some complicated health problems and might have been really important to hear what they had to say."  He came back a while later and said he tried to call but could not reach anyone, just a bunch of voice messages but reassured me that he would not use Propofol.  I am glad he swallowed his pride and tried but it was a little late in the game.

Dr. Hansen was of course the best part of the day.  I knew Sam was in good hands and even though Dr. H had had a huge day of other surgeries, he was energetic and happy.  Sam finally smiled when they gave him the Versed, he laughed even.  The OR nurse came in to take him and said, "Can you tell me your name?"  Sam looked at me, then looked at his hospital band," I know my name but I can't pronounce it." then he started laughing and made a feeble attempt to say his name. 

Anyways, the bottom line is, Sam has about an 8" length of bowel that is inflammed and a good portion of it covered in ulcers.  He either has infectious colitis (C-Diff) or Inflammatory Bowel Disease.  One takes months to treat, the other a lifetime and is an auto-immune disease.  He also showed abnormalities in his duodenum which is located in the small bowel, closer to his stomach.  That could be indicitive of Celiac's Disease but it could be a manifestation of mitochondrial disease or Shwachman Diamond Syndrome.  Spencer has the very same abnormality and he had a negative Celiacs test. 

I am very grateful that we have been able to catch this 'early' before his bowel was perforated or blocked.  It is causing some spasms which can act like a blockage but that can be treated with medication.  It's so crazy because in Seattle, I told the doc that Sam was my 'easy', healthy child.  I truly did not see this coming.  Just shows how unpredictable these diseases are. 

Last night, we were home about 40 min. and Spencer was flat out in excruciating pain coming from the center of his chest.  I tried everything from essential oils to acid blockers and reducers but none gave him relief. This morning he is feeling better. 

Monday, Shelbie will be in the hospital for her transfusion which I am dreading since the past three times have been horrendous.  Currently, there is a small boy in the UK clinging to life because of the same virus that Shelbie has had for almost year, Adenovirus.  It has attacked his lungs.  Shelbie's is working on her eyes and sinuses.  I had no idea it could get so ugly and it scares me, so, we will gladly endure these transfusions if it keeps the viruses under control. 

Thank you to those who have offered such kindness and warm thoughts.  I will end on a funny note...My neighbor took a Jimmy Johns sandwich and Pepsi up to the hospital on her lunch break for me but she didn't know we hadn't checked in yet so she asked the admission clerks if they could keep it in their fridge until I arrived.  At first, (the admission clerk told me) they said they were going to flat out tell her that they don't hold food for people but then when she said it was for me, they said, "Oh Kathy, ya, no problem."  So funny but sad at the same time that we are there so much, they know us on a first name basis. 




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Wednesday, April 18, 2012

Clarity

Well, it's been one interesting day.  Samuel has to go in tomorrow for a Colonoscopy and an Endoscopy.  I'm not surprised at all and ironically, neither is Sam.  When I picked him up from school I had to tell him the bad news.  He said, "I knew it.  I've had a feeling this was going to happen."  Thankfully, I've been picking up his good friend from school this week so it was nice to have him with us to keep the tension down.  From school we headed to the doctor's office to pick up the medicine for the bowel cleanse then on to the hospital to get registered and meet with the nurses and Anesthesiologist. 

I feel like we are in good hands.  Our surgeon, (not many people can say they have a surgeon.  Most people have bookeepers, accountants or hairdressers, we have a surgeon...the best there is too!) is so good and is the only one I will let cut my kids open or scope or do whatever needs to be done. 

I think I see a little more clearly how beneficial our trip to Seattle was and the information I received there was so valuable to what we are going through this minute.  All the medicines Dr. Saneto told me the kids could no longer have are the standard meds Sam would have been prescribed for this procedure.  He told me that anytime the kids have surgery anywhere other than Seattle, we are to call the Anesthesiologist at Seattle Children's who specialize in Mito kids and they will give instructions for putting the kids to sleep.  I am so grateful that I had that number so hopefully, things will go well in that department. 

One thing he cautioned us about was Flagyl; a strong antibiotic used to treat C-Diff.  Interestingly enough, it was an afterthought to him and I hand wrote it in on the list the nurse gave me.  Sam had C-Diff three years ago when he had bowel surgery and I think I've mentioned how horrible it was.  I am thinking maybe part of that nightmare was the fact that the medicine he was taking was doing more harm than good and I think this may be something that we will have to deal with in the not too distant future- like maybe tomorrow.  Depending on his blood counts going into the procedure, he may need a whopping dose of antibiotics to protect his weak immune system.  That would likely wipe out the good bacteria in his bowel and the C-Diff bacteria will take over.  Nothing to do but wait and see.

There are so many other little coincidences that help me to understand that God is watching out for us and helping us through yet another trial or maybe it's that same old trial that never ends....It just goes on and on.   One thing about trials that I find fascinating is to look back and see how each step we take contains important tools like new information, reminders,  knowledge and growth that we will need at some point in the future.  I love to put all the pieces together and feel that 'Aha' moment.  It makes it a little easier to accept the plan when things make sense and have a purpose that you can see.  

Tonight will surely be a long night.  I am sure Sam has an obstruction or narrowing at least because after 6 hours on the bowel cleanse, still no action.  I'm guessing it will kick in in a couple of hours so we have lots of movies planned to get us through this long night.   Hopefully, I will get all my work caught up so I can spend the next few days concentrating on Sam.  Poor kid!  This is rough on him but it's cool to see Shelbie and Spencer rally around him and cheer him up.   
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Pins and Needles

After a couple of decent days for Sam, all of his symptoms of Ulcerative Colitis have returned with a vengence.  He has been three days now, suffering and I fear he is headed for trouble. 

I called the doctor yesterday and twice this morning.  He said if things didn't improve after a week on medication then we were suppose to call and he would schedule a CT scan and Colonoscopy.  My gut tells me that we are going to be in surgery before the week's up.  There is something bigger going on than just ulcerative colitis, at least that's what my mom senses are telling me.  I really hope I'm wrong. 

I know that if he ends up in surgery, he will spend the remainder of the school year being home schooled and I'm not sure how that is going to happen successfully.  I guess I need to stop projecting the future and sit tight and wait for further instructions.  Hopefully he calls me soon!  I hate to keep bugging people.

This is the week we get genetic results back on the kids as well so that has me a bit wound up.  I think all this underlying activity of anxiety and worry is making me crazy.  I can't remember things, stay focused or even plan the next hour.  I flit from one thing to the next and right now, I am swamped with 'work' so I really need to find my groove and get it on!  Ugh....

I heard Kim B. Clark say something incredibly interesting yesterday.  He is the President of BYUI.  Last fall he had a kidney transplant.  He said that when he found out that his kidney was failing, he determined that he would enjoy every moment of whatever he had to face.  Not just endure but be cheerful and happy, never doubting God's plan for his life.  He said that at the end of the first day in the hospital, transplant day, he had never felt happier know that he was on board with the Plan despite the fact that he had tubes coming from his body and felt excruciating pain. 

Really?  I would love to have an hour to talk to him about this experience.  I always start out with the resolve to 'endure it well' but then my mortal, weakling takes over and then the happiness comes in fits and spurts.  Here's to a new resolve- the next few days could be bumpy.
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Friday, April 13, 2012

'WHEN!'

When I was in high school, there was a popular, somewhat derogatory phrase going around that has taken on new meaning to me now.  "Look at her," kids would say, "It looks like she was poured into those pants and forgot to say 'When'."  I'm sure you can visualize the kind of girl they were referring to, super tight jeans that seemed to be a better fit for a 2nd grader than a mature 12th grader, a big ol' muffin top spilling over the waistband paired with a shirt that was 3 sizes too small. 

Lately, this is how I feel; too big for this world, too big for life; like I was poured into these chronic health problems and forgot to say 'when'.  I kind have a lot more than I need or want or have any idea what to do with.  I have been less than prepared to feel these emotions of being too big, my life too unbelievable. 

Part of the growing pains we are feeling right now, aside from trying to establish some new patterns of living is just trying to find a place to fit emotionally.  We are really good at rallying around the acute problems, problems that have a clear and defining end with at least one doable solution.  We aren't very good at the long haul.  I'm not very good at the long haul.  I think I am slowly reaching that point where I have to  assess how I look at life, my friends, my habits, my patterns of thinking and try to live this chronic life better than I have been.  The only problem is, I have no idea how to do that. 

I have no idea how to keep three sick and tired kids from getting too depressed and discouraged as well as myself and all the responsibility that falls on my shoulders.  I don't know anymore how to balance the bad times with good times, this moment with the next let alone the future moments I worry so much about.  I'm not loving the dynamics of this place.  It takes alot to find the joy in the journey and the further I get down this road of sickness, the bigger I feel and the smaller the pants of my life seem to get. It's uncomfortable!

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Wednesday, April 11, 2012

And Again....

The verdict is in on Sam, at least for now...Sam has Ulcerative Colitis.  Blech!!  Does that mean he doesn't have an intesseception?  NO!  Right now, the fact that he is having the mucus bowel movements, just mucus, is a strong indication for Colitis.  That's what the bowel does when it is inflammed and angry.  More than likely, the lymph nodes are also large and angry which puts him at risk for the intesseception.  For now, we are going to just do the Colitis medication and try to get things settled down.  If the symptoms persist, then we will do a Colonoscopy and/or CT Scan to make sure we don't have bigger problems.  He was also very concerned that Sam is going to have problems with C-Diff, a horrid, awful bowel infection. 

Sam had C Diff three years ago, he had it for over 6 months!  It is horrible to get rid of and highly contagious.  He had to sleep on a plastic air mattress so I could bleach it down, he had to have his own bedding, towels, blankets etc. and all had to be bleached when I washed them.  His clothes had to be washed separately, he had to have his own bathroom and anything he touched had to be bleached like the TV remote, doorknobs etc.  It was such a hard time. 

The only medication available in this country to treat C-Diff is Flagyl.  Well, just two weeks ago, the Neurologist in Seattle warned me against letting the kids take Flagyl.  If this develops into C-Diff, I will have to special order medication from Canada like I did last time and it costs a small fortune, not kidding! 

I am feeling both relieved and anxious.  I hate for him to struggle with Colitis on top of everything else but I am glad that for now, it doesn't look like an intesseception and maybe if we keep our fingers crossed really tight, we won't have to face C-Diff again.  I will just have to keep a close watch on him and hope for the best. 

The medication adds 6 more pills a day and he will be on it indefinitely.  Sam is not happy and is already putting up a huge fight about more pills.  That brings Sam's total of pills per day to 19!!  At the rate we are going, I won't have to buy groceries anymore just lots of beverages for swallowing all these pills!  Ugh....the never ending story....
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Monday, April 9, 2012

Sam's update

Sam got to see our family doc today.  As soon as I told the doc what Sam's symptoms were, he said, "Wow, this sounds all too familiar!"  Yes it does!  He remembered how it took almost three months to diagnose him because he didn't present in the usual way with an intessuception. 

His xrays and abdominal exam came back normal which are good signs.  When he had surgery three years ago, rather than remove the part of his small intestine that had telescoped back in itself, the surgeon was able to pull it out and straighten it back but it left a crease.  The surgeon felt that his body would naturally 'smooth' the crease out over time.  Since the surgery, various colonoscopies have shown that Sam has enlarged lymph nodes throughout his intestine indicating some inflammation. 

There's a chance that the crease is getting caught up on some lingering lymph nodes that are larger than they should be for whatever reason and at times, narrowing the diameter of his intestine causing all the problems.  The other theory is that he has inflammatory bowel disease which we have battled before. 

Our doc is sending us back to the surgeon for his opinion and sometimes, they can do a test similar to a colonoscopy but they shoot air into the intestine and 'pop' the creased part out kind of like you would a dent in a something.  It will be interesting to hear what the surgeon has to say and that will take place on Wednesday.  I'm glad I didn't take the wait and see approach.  We have more options now to turn things around before it gets too bad. 

On a side note, can I just say that Spencer is beat!  He has been working 10 hours days since last Wednesday and tonight when he got home from work, he had no feeling in his legs.  They weren't just asleep, he couldn't feel them at all!  Saturday night, he slept over 12 hours, went to church then slept for three hours, stayed up for a couple and went to bed and slept through the night.  I am really worried but at the same time, this experience of working and being responsible is a great life lesson.  It's tough to watch. 
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Sunday, April 8, 2012

Don't Apologize

People ask me all the time what they can do to help.  I usually respond, "Nothing. We're fine."  We aren't always fine.  I know there are some who ask because they really want to help but there are also some who are only asking to be cordial and socially endearing. 

A few weeks ago, someone asked and I actually needed a little help so I went ahead and asked for their help.  Well, unfortunately, they didn't really mean it and they spent a good 10 minutes trying to back out of their offer to help.  So, that's fine.  I get it.  It was just so awkward. To spare further embarrassment for both of us, I made up some story about why my 'plea for help' was actually a dumb idea...they agreed. 

Anyways, as the last week or two has unfolded, it's been very interesting and I see the dynamics of my little world I am surrounded by changing.  I have thought of something helpful if you really want to help.  Quit apologizing for your 'trivial' problems in life.  Quit assuming that I don't want to hear about your struggles and frustrations.  Quit thinking that I look at you from some pedestal as someone who is far greater because my trials are better than yours!

My trials are mine because that's the plan. They aren't bigger or better than yours and I'm not some Saint because I appear to be all pulled together and happy.  Your trials are yours and just as important, big and stressful because they match your plan.  It really doesn't matter how big or small you perceive our individual problems to be, that's the not the point.  The point is that we are all trying to learn the very same lesson, that lesson just comes packaged differently for each person. We all need to learn to rely on our Greater Power, God, the Universe, what ever you feel comfortable calling it.  I call Him God. These trials allow me to better understand the Nature of God and trust him. 

So, just don't apologize.  If you want to tell me how much the laundry is driving you crazy to the point you are so depressed you can't get out of bed, I want to hear.  Let me help you.   I will never think you are lame, or lazy or dumb for letting something like that get you down.  I get it.  Sometimes, it's the little things that drive a person to the brink. 
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Saturday, April 7, 2012

Boo!

Do you remember the last time someone sneaked up behind to scare you?  Then you know that feeling of your body flushing with adrenaline, your heart racing, beating you into the next room!  My kids love to hide behind doors and around corners to quietly whisper 'BOO' and that scares me more than the loud booming kind of surprise.  I tend to walk cautiously around the corners for the rest of the day.

This scenario describes almost perfectly how I have felt the past few months, I live in a state of high alert.  Everyday, my heart gets away from me, everyday something pops up to scare the living daylights out of me and everyday, I just pretend it didn't really scare me at all but inside, I'm shaking.  I'm not sure if it's because of the stress we have been experiencing this past year with multiple problems that seem to have no end in sight or if it's just due to the genetic wasteland we now find ourselves in.  Whatever it is, I hate living this way.

This week, the spotlight is on Sam.  I know, right, my healthy kid!  Didn't I just mention how healthy Sam is?  Wasn't he the kid that had the least concerns to bring up last week in Seattle? That's how fast things change around here. 

The boys have had to be at their dad's house since Thursday (which I might add really bites- because he missed a couple days of visitation while we were in Seattle having so much fun and an awesome and exciting vacation- according to some-so he insisted on make up time to have his own 'fun' with the kids....hmmmm....ok...that's totally fair)  ANYWAYS, moving on, Sam's bowel movements have turned to straight mucus, no stool.  He has been really scared for the past few days since he's been gone and texting me a lot to tell me how scared he is. 

The bowel movements have now come back but to spare you the details, let's just say they are far from normal.  About 3 years ago, this very same thing happened.  For 2 months, the doctors couldn't figure out what the problem was until one day, just 3 hours after an MRI, he was in emergency surgery for an Intessuception.  His small intestine had started pulling back inside itself, turning inside out and creating a blockage.  He was really, really sick for 4 weeks, but was down for 4 months and missed a ton of school. 

I have been scared all week that we are headed there again.  I will take him in on Monday and hopefully get an MRI to rule out another Intessuception.  They are very rare and almost never happen to children.  I can't get that feeling of fear out of my head and heart.  When this happened before, I really thought I was going to lose him.  Ugh...so here we go on another high alert weekend, jumping every time the phone rings, hoping it's not Sam saying everything has turned to straight blood. 
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Tuesday, April 3, 2012

The More You Know

It's always good to gain new knowledge.  Shwachman Diamond Syndrome and Mitochondrial Disease are two diseases that leave nothing to the imagination.  While in Seattle, the Mito nurse gave me a list of medications that the kids are no longer allowed to take.  Never in my wildest imaginations could I have guessed the number one drug my kids can no longer take...Tylenol.

It would have been nice to know this sooner than now.  Tylenol is one of our first lines of defense against pain and discomfort along with Ibuprofen.  Tylenol stresses and even destroys the mitochondrial in  people who already have mito problems.  There are several other meds that we have used and now won't be able to.  I always wondered why the extreme side effects when the kids took the certain meds, even antibiotics.  They just didn't react like normal kids.  Now I know. 

From now on, surgery will even require a special regimen.  Anesthesiologists will have to contact the special mito team of Anesthesiologists in Seattle to obtain specific instructions on how to administer the meds during surgery.  I had no idea how careful we should be.  It presents a whole new learning curve to get use to. 
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