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Showing posts from April, 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 …

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

Memory Lane

Here we 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 ge…

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 kid…

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.   Sometime…


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 tr…

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…


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 fi…

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…

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 in…

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…


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 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 Anesthesio…