the day that never ends... (but eventually did)

When M was little he loved to watch "Lambchop" with Shari Lewis. I have no idea why he loved that show so much. I remember it being around when I was a kid, and it seemed really dated by the time M was watching... but he loved and and wanted to watch it every day.

I didn't.

I especially disliked the song they ended the show with... "The Song That Doesn't End" Each and every time I heard that song it got stuck in my head. That insipid song tortured me...

Just in case you aren't familiar with it, here's a clip... (misery loves company you know..)

Yesterday was the real life version of the song that doesn't end... only it was the day that didn't end... it "just goes on and on my friend". Yesterday just went on and on and on and on and on. I'd decided to schedule a bunch of doctor's appointments on one day, rather than spreading them out over several days... I thought it made sense to get them over with all at once.

It probably did make sense... they're done and out of the way now... but it was a looooooooong day... it just went on and on.

The day started with M's steroid injection. It was done at a surgical center, and was as quick and easy as something like that can be. (We're still waiting to see how much it's going to help, he should be getting good pain relief by the end of the week.) We celebrated it being OVER with Krispy Kreme donuts.... Mmmm. Then back to Parker, where I had an appointment to get a couple of old silver fillings replaced, and a months overdue mammogram. Along the way we stopped at the bank, then picked up M's new (to him) computer... (his old one, a freeby from the thrift store, finally gave up the ghost) shopped at Costco, made an emergency run to Petsmart for hamster medicine for my youngest grandson's pet, and finally made it home, for good, around 5:00... just in time to cook dinner and collapse.

R went to bed last night praying for an ice storm.

I was praying for a blizzard.

Either of which would have kept us home today.

We did wake up to a light dust of snow in the air, barely sticking to the ground, and no ice at all...





Despite the lack of major weather events, it looks like today will be a much easier day... a uke lesson for R this morning, and her new karate class this afternoon. I think I can manage that...

Life is never boring (an update on M's back)

M had his long awaited appointment at the Colorado Comprehensive Spine Institute on Monday and it was not exactly what I was expecting... (or even close!)

I've already written a letter to the CCSI about our experiences, so rather than write about it again I'll just cut and paste the letter (yes, I am that lazy!).

It's a long letter so (just in case you don't want to read the whole thing) the condensed version is the appointment was a waste of time, we'll won't be going back there, and I have an overwhelming urge to send a thank you note to Dr L, M's regular spine doc at UCSHC.

Get comfortable... here's the letter:

January 8, 2015

To: Colorado Comprehensive Spine Institute Administration

Re: January 5, 2015 appointment with Dr Kuklo


This is to follow up my phone call to CCSI on 1-8-15 regarding my concerns about my son, M K’s,  1-5-15 appointment with Dr Kuklo. 

Due to my son’s disabilities I am his legal guardian. When I called to make his appointment I explained that my son is both developmentally delayed and has schizophrenia, and needs to see a physician who would be sensitive to his unique needs…he is not a typical 22 year old. I was assured that Dr Kuklo saw many of the CCSI pediatric patients, and was very good with individuals with special needs. Unfortunately, that turned out not to be the case. By the end of my his appointment with Dr Kuklo M felt hopeless about his back problems (an L5 pars fracture), confused and upset… Dr Kuklo told him several times that his back would never heal, giving the explanation that it would not heal because the fracture was on the “compression side”… M was not able to understand the explanation, he understood only the message that his back would “never heal“ (in M's mind, “never get better, pain forever“). 

Dr Kuklo gave the impression that M’s back problem is so common as to be unimportant, saying that 5% of the population has pars fractures… He seemed to have no interest in the impact this injury and the associated pain has had on M’s life. I understand that, as back problems go, a pars fracture is a common issue and not an emergency… However, the fracture has impacted M’s life significantly for over a year and is not a common issue for us. It would have been nice if Dr Kuklo had treated M’s experience with a bit more sensitivity and respect…

Dr Kuklo spoke disparagingly about other treatment options that have been suggested by other spine physicians M has seen and was so outspoken about his poor opinion of surgery for M’s problem, and it’s slight chance for success, that if M does need that type of surgery in the future, it’s likely to be very difficult to get him past the anxiety triggered by Dr Kuklo’s overzealous and overbearing sharing of his negative opinions. 

As the parent of two children (now young adults) with special needs it’s easy for me to recognize people who are sensitive to, and understanding of, those with disabilities. Dr Kuklo was neither… I have no idea why M was scheduled with him. Dr Kuklo’s words and the attitude in which he said them were confusing and hurtful to my son… 

During the appointment Dr Kuklo came across as arrogant and patronizing towards me as well, at one point telling me that M has a pars fracture, then asking “Do you know what that means?” in a tone of voice that left no doubt in my mind that he believed I was an uneducated, clueless, parent and could not possibly understand the big words he was using. Had he taken the time to read through the medical records I provided, he would have seen that M has been in treatment for the pars fracture for almost a year… Does he really think I would not know what the doctors have been treating all this time?  M has been seeing highly educated and experienced physicians for his entire life, I have gotten used to being treated with respect and as a partner in his care by the many specialists he sees (orthopedists, gastroenterologists, cardiologists, psychiatrists, neurologists, just to name a few…) Does Dr Kuklo really have such a low opinion of parents who take on the job of caring for their seriously disabled adult children? 

Our appointment ended up taking almost two hours… only about 15 minutes of that time was actually spent with Dr Kuklo. Part of those two hours was spent on an x-ray, but most of that time was spent sitting in the waiting room while Michael’s anxiety went up, he wandered restlessly, and those who came in after us were called back. That kind of a wait is extremely difficult for someone who is developmentally delayed, mentally ill, and anxious about the appointment before we even walked in the door… 

We waited two months for our appointment with Dr Kuklo… two months during which M’s back treatment was on hold and he struggled with the pain and all it brings with it (pain causes stress, stress causes an increase in psychiatric symptoms, including psychosis). We made the decision to do this because I’d heard good things about the CCSI, and I hoped the orthopedist we saw would help us clarify the next step in M’s treatment. Instead we ended up with an unnecessary x-ray and 15 minutes with an arrogant, opinionated, and insensitive, doctor. The appointment was a complete waste of our time. 

Imagine my surprise the next day when I decided to leave feedback about our appointment online, googled Dr Kuklo’s name and found his past checkered with various professional/ethical issues. Why would you schedule my son… who is so vulnerable and nothing but complicated medically, developmentally, and psychiatrically with a physician with Dr Kuklo’s very poor bedside manner, and questionable history? 

I am extremely thankful that we do not have to see Dr Kuklo again, and that M still has good treatment options available to him (not through CCSI, obviously)…  but angry about the lack of caring about the patient we experienced. I had much higher hopes for your clinic and your doctors… 

(I'll let you know what kind of response I get, if any....)

Happy Monday

What makes me happy?

A little serendipity... and options.

After hounding M's spine doc for two weeks for the results of the spinal injection he did last month, and finally getting nothing more than a referral to a spine surgeon (does he not understand that spine surgery is the absolute LAST resort?!), I noticed a book E got me for Christmas last year sitting on the shelf.

I think she got it for me because it's a nice, feel-good, dog story.



She had no way of knowing that the author suffered through years of back pain (chronicled in the book) and gave the name of the spine clinic, and specific doctor who helped him when no one else could... a spine clinic that just happens to be in Denver.



Yes, serendipity is good....

I spent this morning filling out the intake form for the clinic, hoping to get M in for a second opinion. I know they might not take our insurance, and might not want to get involved because M has such a complicated mix of physical and psychiatric needs... but it is very good to have options. 

cross that one off the list...

Well, M had his back injection and we can cross that off the list of procedures that might help everyone understand why his fractured back isn't healing, and how to help it along.

He did great through the procedure and his spine doc was very nice about letting me stay with him the whole time... something he says he almost never does.

M was awake through the procedure and was able to watch as his doc used a "real time" x-ray to guide the tiny needle to just the right spot.

M's doctor showed him the "scottie dog" in his back x-ray... (this isn't M's x-ray, but shows the dog well)




Can you see it?



We could see it right away, and it was so interesting to actually be able to visualize where the problem is.



M's break is across the pars... the neck of the scottie dog.

It looked to the doc as though the fracture that he's seen in past x-rays might have finally broken all the way through. Normally that would not be what we were hoping to see, but in this situation the doc is hoping that maybe by finally breaking through, it will be able to start to heal.

They injected a contrast solution, and then some lidocaine, and we kept a pain journal for the rest of the day. I've emailed the doc with the M's pain ratings and we'll see what he says. He seems to be leaning more and more towards surgery... either a pars repair or spinal fusion... but I think both M and I are going to need some serious convincing before agreeing to another major surgery. One step at a time though, we don't have to make that decision now... thank goodness.

step on a crack...

I haven't posted about M's broken vertebra for awhile because there really hasn't been much of anything going on.... but I thought maybe it was time for an update anyway. (And since a blog post isn't complete without a few photos, I've included some I took this morning while out doing the barn work.)



M's back is still broken, not healing, and extremely painful. It hurts when he breathes now (at times, not all the time thank goodness!) and enough people have made comments connecting a broken back with being paralyzed that, when the pain is bad, M starts to believe he's becoming paralyzed and his anxiety shoots through the roof. :(

Needless to say the whole experience has not been good for his schizophrenia... his psychiatric symptoms have increased as the back pain has gone on... and on... and on.



What's next?

A band-aid.

After his spine doctor admitted to being stumped in terms of what to do next, and took M's case to the weekly spine clinic conference of the medical school spine docs to gather opinions, we decided to start with the least invasive, safest recommendation; inject pain killer into the back to just make sure the pain is coming from the joint itself and not surrounding muscles. Depending on what kind of pain relief M gets, and for how long, the next step will probably be a steroid injection into his vertebra.



Neither of these will fix the break, they are mostly just a band-aid, but might settle things down enough in there for the bone to heal naturally.

If the injections don't help enough, the bone isn't healing and M's in a lot of pain, the next recommendation is surgery... possibly spinal fusion. I'm definitely not sold on that plan, but we'll cross that bridge when we come to it.



So... my boy's still hurting and if I seem distracted at times, it's because he's unstable and hurting which makes for some long days.

The car is packed, filled up, and ready to go.

The cooler is packed with snacks and drinks.

We're on our way to Nebraska to do a little family visiting...

We were going to be on our way to Nebraska bright and early this morning... but M was up sick all night (gastroparesis) and the trip has been delayed.

I'm hoping we can still see these buttes soon...



See you next week!

a newsy little update

So... no pictures of a finished barn quilt on the chicken coop today. We ended up running all over town on Tuesday, so I had very little time to paint... and yesterday an old friend spent the day, so no painting then either. It's supposed to rain today, and S is coming for a visit Friday-Saturday so Sunday might be my first chance to really spend time outside painting.

Since I have no "after" pictures, I thought I'd post a quick update instead...

M is one week away from his 22nd birthday... and is unsettled. He's always unsettled around his birthday, and unfortunately this year is no different. It doesn't help that his gastroparesis has been flaring up for the past few weeks, and he's thrown up more than a few of his bedtime medication doses. His schizophrenia meds are truly what keep him connected and reasonable... he can miss a dose here and there, but not many, without causing problems.

I do think the gastroparesis is finally calming down again, thank goodness, he's made it through two nights without vomiting. I think the cause of this recent flare up might might have been the Ensure I started giving him a month or so ago. A friend, who is a doctor, suggested it when I mentioned his weight loss to her... but I think it's just too rich for him. Unfortunately, he's down about 30 lbs over the past couple of years, and can't afford to keep losing like this. So, it's back to the drawing board... finding ways to get calories in, without triggering another flare up!

M's back is still an issue, and things seem to be at a standstill in terms of treatment. His spine doctor wanted him to stop wearing the brace (apparently, wearing it for too long starts to be counterproductive...) and ordered an MRI which was done several weeks ago. The doc said he'd call to let me know the results of the MRI... but despite multiple reminder calls on my part, I'm still waiting for the results. (grumble, grumble) The MRI will (probably) show either a fracture in his vertebrae or a malformed vertebrae... and which one it is should help steer the next direction we need to go for treatment.

R is spending the month running back and forth from Mr G's house, taking care of his horses. He's hired her to feed, groom, muck stalls, etc. It's only for this one month (neither of us thought it would be a good commitment to have during the winter) and she's already looking forward to the end of those early morning (and evening) bike rides down the road.

The chickens are great... none of them has been eaten yet... (thank you coyotes for small favors!)... and they are laying well. I do enjoy watching them pecking and scratching around in their run, and after a few treats of apple cores and salad scraps, they are SO happy to see me each day... They come running as soon as I show up at the gate, checking to see if I've brought anything more exciting than their regular chicken feed.

I'll close with this picture...



....one of the miniature pumpkins in the pumpkin patch. It's only about 2" tall right now, but perfectly formed. It will be fun to see how big it gets!

A two Dr Pepper sort of day...

I don't drink coffee, and have never built up much tolerance for caffeine. A little caffeine goes a long way with me, and just a little more can keep me awake half the night... body tired, but thoughts buzzing with grand projects and inspirations...

So I limit myself to one soda (Dr Pepper!) a day. I only drink more if I think it's the only way I'm going to have the energy to make it through the day.

Today is likely to be a two Dr Pepper day.

I should have saved myself the trouble of getting ready for bed last night... tracking down sleep ended up being mostly an exercise in frustration.

I had a hard time getting to sleep because I was thinking about the car we're buying today. I'm definitely taking the road less traveled in buying this car... Instead of buying the newest car we can afford (never a new car, always a cross-your-fingers-and-hope-for-the-best used one) I'm buying an older car. On purpose. And hope I'm not throwing money away or buying trouble...

So I had a hard time getting to sleep... wondering if I was making the right decision.

Shortly after I fell asleep... M woke me up, feeling sick. I got him a Tums, sent him back to bed and (using my used car buying strategy) crossed my fingers and hoped for the best.

An hour later he was up again, stomach unhappy... threatening to erupt.

False alarm... back to bed... sleep a little more.

An hour or so later... M is up again... truly sick this time. His stomach rejects every single thing he's put in it...

He's been up two of the last three night vomiting... his gastroparesis is seriously not happy right now. Today will be a challenge of convincing him to eat lightly, to not overload his angry stomach... even while he angrily insists he's fine now... and hungry.

His stomach finally starting to settle....M showers... better, but still calling out how bad he feels, needing reassurance that he's ok. Then, freshly clean and back to bed, M goes back to sleep while I scrub and sanitize the bathroom...

As I get in bed and try again to sleep I hear the first birds chirping outside the bedroom window and realize that morning is almost here.

It's the beginning of a two Dr Pepper sort of day...

a great appointment and some answers... finally

I recently wrote about the problems M's been having with his back, and the frustration I felt trying to get some answers as to what is the matter... Yesterday he was seen at the Spine Clinic at UCHSC and I finally feel like I'm understanding what is going on. Up until now I felt like I was being told different things by different people, and nothing made sense... nothing seemed to fit together.  After talking to the doctor M saw yesterday it feels like things are finally fitting together and making sense.. which feels really good.

It looks like M has a stress fracture (spondylolysis) in one of his vertebra. It sounds like it could be genetic, although I've wondered if his skeletal problems might also be connected to his FASD. (Since prenatal alcohol exposure can affect bones...)

From Wikepedia:

Spondylolysis (spon-dee-low-lye-sis) also runs in families and is more prevalent in some populations, suggesting a hereditary component such as a tendency toward thin vertebral bone.

Although this condition can be caused by repetitive trauma done to the lumbar spine or strenuous sports such as football or gymnastics, anatomy also plays a major role. According to research done in 2007, genetic make up of the lumbar spine has much to do with the occurrence of spondylolysis in certain individuals.^{[citation needed]} A study done on 115 male skeletons with L5 spondylolysis was proof that a slight tweek in the anatomy of the spine can increase the likelihood of spondylolysis. In those with spondylolysis, many times the inter-facet region of vertebra L4 is more trapezoidal in shape with a larger width than that of a normal vertebra. This also changes the iner-facet height, making them shorter and narrower. With this defect in the spine, a normal load applied to the spine will be greater compared to those without it. This is due to reduced surface area and torsional range of motion during twists and bends.

Apparently, the spondylolysis is probably the cause of the "focal sclerosis" that showed up on the CT scan. If there is a fracture, his body's response would be to lay down bone in the area of the injury. That abnormal bone growth is the focal sclerosis.

All this has to be confirmed with a bone scan that M will have done in the next couple of weeks. After the scan we'll follow up with the spine doctor. It looks like treatment is probably just enough time to let the bone heal, and possibly a brace if it doesn't seem to be healing well. The doctor did mention the possibility of surgery to screw the pieces of bone together, and M looked about ready to head out the door. After his hip surgeries, M is very afraid of surgery... especially anything involving screwing bones together. (M still has screws in one hip from his first hip surgery!) I told the doctor that surgery wasn't something we wanted to consider or talk about right now and he quickly backpedaled...

So... all in all a great appointment... we both like the new doctor and feel good about the direction things are going.

Enough about medical stuff... tomorrow this blog will be back to it's regularly scheduled programming!

a great appointment.... and some answers (finally)

I wrote here about the problems M's been having with his back, and the frustration I felt trying to get some answers as to what is the matter... Yesterday he was seen at the Spine Clinic at UCHSC and I finally feel like I'm understanding what is going on. Up until now I felt like I was being told different things by different people, and nothing made sense... nothing seemed to fit together.  After talking to the doctor M saw yesterday it feels like things are finally fitting together and making sense.. which feels really good.

It looks like M has a stress fracture (spondylolysis) in one of his vertebra. It sounds like it could be genetic, although I've wondered if his skeletal problems might also be connected to his FASD. (Since prenatal alcohol exposure can affect bones...)

From Wikepedia:

Spondylolysis (spon-dee-low-lye-sis) also runs in families and is more prevalent in some populations, suggesting a hereditary component such as a tendency toward thin vertebral bone.

Although this condition can be caused by repetitive trauma done to the lumbar spine or strenuous sports such as football or gymnastics, anatomy also plays a major role. According to research done in 2007, genetic make up of the lumbar spine has much to do with the occurrence of spondylolysis in certain individuals.^{[citation needed]} A study done on 115 male skeletons with L5 spondylolysis was proof that a slight tweek in the anatomy of the spine can increase the likelihood of spondylolysis. In those with spondylolysis, many times the inter-facet region of vertebra L4 is more trapezoidal in shape with a larger width than that of a normal vertebra. This also changes the iner-facet height, making them shorter and narrower. With this defect in the spine, a normal load applied to the spine will be greater compared to those without it. This is due to reduced surface area and torsional range of motion during twists and bends.

Apparently, the spondylolysis is probably the cause of the "focal sclerosis" that showed up on the CT scan. If there is a fracture, his body's response would be to lay down bone in the area of the injury. That abnormal bone growth is the focal sclerosis. 

All this has to be confirmed with a bone scan that M will have done in the next couple of weeks. After the scan we'll follow up with the spine doctor. It looks like treatment is probably just enough time to let the bone heal, and possibly a brace if it doesn't seem to be healing well. The doctor did mention the possibility of surgery to screw the pieces of bone together, and M looked about ready to head out the door. After his hip surgeries, M is very afraid of surgery... especially anything involving screwing bones together. (M still has screws in one hip from his first hip surgery!) I told the doctor that surgery wasn't something we wanted to consider or talk about right now and he quickly backpedaled... 

So... all in all a great appointment... we both like the new doctor and feel good about the direction things are going. 

Enough about medical stuff... tomorrow this blog will be back to it's regularly scheduled programming! 

~garden notes~

At our elevation (about 6,300') it's a little early to do much gardening... we still have at least a little more snow to look forward to and the possibility of freezing temperatures. Since we've lived here we've seen snow every month except July and August... 

The average date of the last freeze for this area is about May 20th... so I don't set my tomatoes out, or plant my other warm weather seeds, before then. 

But there is still plenty I can be doing... 

We're moving ahead with the plans for the new pumpkin patch fence, and have the area all laid out and staked... Unfortunately we've had to postpone having the post holes drilled twice because of the weather. Now it looks like they will be drilled Monday and we can start setting the posts. I'm so excited to get that project moving!

I did enlarge the pumpkin patch a little, leaving enough room between the new fence and the pasture fence to drive our little lawn tractor through, but no more... so if we have to drive a car or truck around to the back of the property, we'll have to go through the pasture now. 


I enlarged it because, by the end of the summer, the pumpkins always take up that much space anyway. I usually end up patching together some combination of cattle panels and field fencing to temporarily fence off (from the deer) the pumpkin "overflow". With the garden itself being larger the pumpkins should have enough room now. I also squared it up with the little bit of fencing the runs along the front of the house, which should look a lot better... 

(the string line in this picture doesn't look straight... once we put in the stakes it wasn't needed, and it's been loosened by all the wet and snow the past couple of weeks)


Making way for the pumpkin patch fence, meant moving the iris' Joe's mom gave me a few years ago, and a peony bush that grew in what had been the outside border of the pumpkin patch, but would now be in the patch or under the fence...

I separated the iris' and moved them under the maple tree out front (still plenty of south sun)... and around the little bird feeder.



You can see the first of the sweet williams coming up too...



(Yes, I've got old sprinklers and things stored under those steps... I guess I should have moved them before I took the picture!)



The peony I moved around back into the "remembrance garden" with the other peonys...



I've been working in the kitchen garden too... 

I spread a good layer of alpaca manure on the entire garden and got it turned into the soil which was a big, stinky job! (I'm glad it's over...) The rhubarb is growing, and huge... but still a little droopy from our last snow storm.




 The chives are growing like weeds...



 ...the strawberries (in the big trough planters) are looking good...



 ...and the mint is up. (I use mint like ground cover... letting it grow around the flagstones in the remembrance garden and cutting it with the lawnmower each time I mow. I let it grow long around the edges for tea, etc.)




I've got the carrots, lettuce and some butterfly flower seeds planted, although most of the garden is still "resting"...



And finally... I've planted pansies in the trough/planter out front, and in the back window boxes. I'll fill in the window boxes with more flowers later, it's just too early in the year for anything but pansies (but I did have a yearning for a bit of color..).



The pansies in front are "caged" because the deer LOVE them so much... it's either make a cage over them or move into the front yard to keep the deer away!




Anybody else doing any early spring gardening? 

Quick update on M: We saw the orthopedist yesterday (who specializes in hips) and were referred to the UCHSC Spine Clinic... So we really don't know much more than we did last week.

our not quite spring weather (and an update)

Yesterday's snow is almost gone already... We went from having an icy wonderland outside the window in the morning, to sticky mud everywhere by afternoon, to, in the evening, the ground already starting to dry out.  We lost no branches during the storm, but the fruit trees were just starting to bud and I'm hoping the hard freeze didn't finish off my harvest (again!) this year. (We didn't get a single apple off the trees last year thanks to a late freeze...)

The pastures are greening up, Murphy and Tucker are losing their winter coats, and I've planted pansies in the little trough/planter out front...but I'm pretty sure winter isn't quite done with us yet. 

It didn't look too spring-y the other day when I took this picture of R, in snowshoes a neighbor lent her, making her way across the front yard.

I didn't intend to be cryptic when I wrote in last week's daybook about the results of M's CT scan. Unfortunately, the results of the scan are confusing to me... I can't seem to track down enough information (that I can understand!) to feel like I have a good picture of what's going on.  So I didn't post anything about the results, hoping to have a better understanding first.

They only scanned his lower back, so the CT didn't give any new information about the mild scoliosis in his upper back found on the x-ray. The results of the CT scan show something called "focal sclerosis" at his L3 and L4 vertebrae (this is instead of the spondylolysis, not in addition to it). This type of sclerosis apparently causes an abnormal hardening of the bone. I don't know what impact that hardening has on his spine, the long term prognosis, etc.. I haven't been able to find much of anything about this problem, especially in a young man, online.

I emailed his PCP on Friday asking her to clarify the results... but haven't heard back. M has an appointment Thursday with the orthopedist who did his second hip operation... hopefully I'll get more information then (and probably a referral to the UCHSC Spine Clinic). 

So that's the latest... hopefully I'll know more by the end of the week.

never a dull moment...

I had plans to work outside yesterday... the weather was perfect and I've been so ready to clear the last of winter out of the garden to make way for spring growth. 

I did work outside in the morning, and got soil in the kitchen garden turned, and cleaned up a bit in our little "remembrance" garden. But then my outside plans were derailed with a trip to the ER for M. 

He's ok... His foot slipped going down a step yesterday and he came down hard (on his feet) and his back pain went way up. He could hardly move for awhile, it hurt to sit, or stand... he couldn't bend over... and he was panicky from the pain. (He said later he was worried he'd broken his back!) I called his doc's office and they were less than helpful... She (M's doc) was off yesterday and the people I talked to didn't know him at all. Since he already has a CT scan of his back scheduled for today, they said if he was just having an increase in his "normal" back pain to wait for the CT scan, but if it's new back pain, take him to the ER. 

I wondered why they just couldn't see him in the office (there are a whole bunch of docs in the practice, surely someone else could have seen him?), but finally decided... after M was still in a lot of pain several hours after slipping... to take him to the ER. 

 Unfortunately it was a busy day in the Children's Hospital satellite we go to and we were there for hours...

 

The good news is, after another x-ray we know he doesn't have a stress fracture in his back (a concern when we first went in), the bad news is he might have herniated a disk. We won't know though until after today's CT scan. 

So we'll be spending this morning at yet another Children's Hospital satellite site, getting the CT scan done... 

And this afternoon I'm working outside. I'm planting carrots and lettuce in the newly turned kitchen garden and I'm going to start measuring and marking for the pumpkin patch fence. It will be my reward for all the medical stuff I've been doing lately... ;)

(the kitchen garden... almost ready for some early spring seeds)

~Happy Monday~ (and thanks)

Thanks everyone for the kind comments about M's most recent medical problems... I'm SO glad he doesn't have diabetes, I can't imagine trying to manage both it and gastroparesis! Unfortunately, he's having a lot of back pain... which is such a difficult kind of pain to manage... I hope we can get in for the CT scan soon. And Angela, thank you so much for the info. about the book. I don't have it... but I will as soon as Amazon gets it here!   

What makes me happy?

The first robin of spring!

(this picture was taken a few days ago... all the snow we got in last week's storm has melted)

waiting for the phone to ring...

M saw the doctor yesterday... He's been such a complicated kid medically, and unfortunately he doesn't seem to changing as he reaches adulthood.

The biggest concern I had, and the reason I made the appointment, was more weight loss. From what I understand weight loss isn't uncommon with gastroparesis (which he has had since about 2009)... M has a good healthy diet, but it must be low fat, and he has to avoid foods that slow digestion. Increasing portion sizes or fat will trigger the severe vomiting spells he gets... which can cause tears in his esophagus and weight loss instead of gain. So it's become a sort of a catch 22. To gain weight he should eat more, or richer foods... both of which trigger the vomiting spells. The last time we were in to the see his PCP... when he'd lost 10 lbs over the previous year, she was concerned and wanted me to let her know if the weight loss continued.

I thought he might have lost a little... but as K (dd#3) was getting ready to head back to Ghana, and was weighing her bags M got on the scale... and I was shocked to see he'd lost almost 10 lbs more. So he's down more than 20 lbs in less than two years.

It might be the gastroparesis... but it might also be diabetes. Diabetes is always tough, but on top of what M already has going on... it sounds impossibly difficult. The doctor ordered a bunch of labs yesterday, hopefully we'll get most of the results back today.

I startled awake last night from a sound sleep... heart pounding from a bad dream. The dream? The doctor calling to say that M has diabetes.

M's also been having back pain. I hadn't worried too much about it at first, he tends to get aches and pains... possibly because he's always kind of off-balance since his right side is so much weaker than his left side. (Something that's become more pronounced as he's gotten older.) But he's been complaining more about his back lately rather than less so I asked his doc about it too.

She examined him and says it seems to be skeletal... not muscular (alarm bells started going off at this point, after all his hips problems the LAST thing he needs are more orthopedic issues!) and she's concerned his vertebrae might be somehow compressing together. She ordered a bunch of x-rays and depending on what they show he might need an MRI too. Again, we'll know more later today after she's had a chance to see the films.

So today will be spent waiting for the doctor to call.

Poor M... he's such a trooper, he has so much going on and yet he's always sunny and happy. He never complains about all that he has to deal with... he never asks "why me".

I'll be saying lots of prayers today that the results from both the blood work and the x-rays is good... best case, rather than worse case, scenario.

Edited to add:

I heard back from the doctor... all the labs are good, no diabetes! She wants us to look into a stomach "pacer" (like a pacemaker for his stomach) because she thinks the weight loss is all from his gastroparesis. The pacer seems to be something that is brand new, and so we'll have to think about for awhile. The news about his back isn't as good.. he has a slight curve in his spine fairly high on his back (scoliosis), which can cause pain, but he also has something called spondyloysis (a defect in the connection between the bones that make up the spinal column) at his L5 vertebrae... a CT scan is next to see the extent of what's going on and figure out what to do next.

swallow study

M had his swallow study yesterday and it was, I'm sad to say, a disappointing waste of time. His PCP ordered the study (where he eats food coated with barium, and they x-ray his throat as he swallows, looking for problems) because he's been choking more often lately.  He's had a tendancy to choke on food, to feel like his throat is closing, for a long time... years... but it seems to be getting worse lately.  (Lately, he's even choked on rice, and bananas!) So I took him to the doctor (pediatrician) to get her take on things... I'd been thinking it might be his tardive dyskinesia getting worse (moving down from mouth to throat muscles) and she thought it might be the gastroparesis... moving up to effect his throat.  So this study was a first step in trying to figure out which of these ideas (maybe neither!) might be what's going on.

We got to the hospital way early... in part because traffic was light and in part because they sent me paperwork saying his appointment was at 1:30 and had it in their computer as a 2:00 appointment. So we hung around Children's Hospital for awhile... just killing time. When it was finally time for the pre-study interview they said they thought we were probably scheduled for the wrong kind of swallow study. That the study the doc ordered is too limited, it probably woudn't give us the information we were looking for but, after a call to the PCP's office, said they would do it anyway.

The study itself went well... M ate the things they asked him to eat and they had a clear view of him swallowing. They did see that his throat tends to hold onto a bit of "residue" when he eats... not enough to choke on... just enough for him to feel like he needs to clear his throat. (This tendancy was also found during the first swallow study back in 2008 and seems not to have changed... it's very unlikely that it's connected to M's choking and feeling like his throat is closing up.)

Unfortunately, as they had anticipated, the study wasn't comprephensive enough to really answer the "why" of M's troubles with choking. After the study, we talked to the  OT's who did the test, and got their recommendations. They were overly simplistic... have M swallow hard and take a drink of water.  Helpful if the problem was the funny feeling in his throat from a little food residue sitting in there... but no help at all when faced with an adult sized person seriously choking on food.

So basically the three hours we spent at TCH was wasted time... They are recommending another type of swallowing study and possibly some other testing as well.  Luckily ;) M's pediatrician is out of town for the entire month of October... so we won't have to start scheduling the extra testing for a couple of weeks.

Today starts a marathon of busy-ness... a neighbor get-together today, followed by M's blood draw (dropped off at the hospital), his shift at his worksite and a trip to the doc's for flu shots. Tomorrow we'll be getting ready for the homecoming dance in the evening...(R has her dress, but M has nothing but a tie! He's lost enough weight that I will probably have to buy him all new clothes for the dance). Saturday is bowling in the morning, then driving north to pick up S, R's big family birthday lunch, and St Joe's Coffee House in the evening. Sunday is the "Celebration of Life" for R's friend who passed away earlier this week. Monday we collapse... (I'm looking forward to Monday! :) )

OMGoodness (gorgeous sunrise) and an update from yesterday

I don't take a lot of sunrise and sunset pictures anymore.  When we first moved here I did... after decades of only seeing glimpses of the sunrise and sunset peaking through the rows of roof tops that surrounded us in the city, it was AMAZING to see the sun rising majestically over the horizon, glowing in it's intensity... or watch it slowly sinking behind the mountains in the evening, the colors starting as brilliant oranges, blues and purples, then fading softly to lightly tinted gray as the sun finally dipped behind the tallest peaks. I love watching sunrises and sunsets... I would love to document them the way Debbie Wagner does, painting each sunrise....If I was an artist like my brother, I might try. But somewhere along the line I'd stopped taking constant pictures of the sky... I guess I'd started taking those beautiful sunrises for granted. :(

Yesterday morning was different though... I could see the glow of the sunrise right through the closed bathroom blinds... and couldn't help but grab the camera and head outside.

What an incredible sunrise... The whole horizon glowed red to orange to yellow... the colors so brilliant they didn't seem real. It backlit the trees creating dark silhouettes  to contrast with the riot of color behind them.



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What a gift to be able to look out my backdoor and see this:



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How could I ever take this for granted?!



It was a beautiful start to a good day. M had his steroid injection yesterday and he was so scared. He remembered when he'd had to have the  MRI with contrast of his hip and they had to inject dye into the joint. He was afraid it was going to be the same... (That had been a very painful experience!) Thankfully the steroid injection went well and wasn't painful, the doc who did it did a great job and had the hip completely numb before entering the joint. Afterwards, while the joint was still numb, M was ecstatic...it was the first time in years that his hip didn't hurt! The marcaine had worn off by bedtime and it was sore again... but hopefully the steroid will help it not be as painful as it has been lately. We celebrated the procedure being over and a pain-free hip with ice cream and a trip to the thrift store. (Of course, it's one of M's favorite things to do!)

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This is my favorite of yesterday's sunrise pictures. This is a portion of the original property fencing that's still standing... the old lodgepole pine fence post, the fencing, sagging from the weight of many years... and the brand new sunrise lighting up the sky behind.

And so it goes...

It's been a long week... There has been altogether too much going on around here for me. A big part of that "too much" is that M's having a lot of medical issues again... and so the doctor visits, testing and procedures have begun again too.

M suddenly started having more pain in his hips about a month ago (he has a congenital hip malformation, and has had both hips "rebuilt" over the past 3 years... one in 2010, one in 2011). He always has hip pain but it's gotten significantly worse lately... so back to the orthopedist we went. I was happy to learn that M's regular ortho, who used to practice out of Children's Hospital, has switched over to University Hospital and sees adults now. Perfect... since M is 21 and really should start transitioning over to adult care.

The appointment was about the same as all his other ortho appointments, starting with an x-ray of his hips... but because University Hospital is a teaching hospital a resident came in first to go over the x-rays with us. He examined M's hips (such a painful exam... hard to watch) then showed us the x-rays saying he didn't see anything there, and he thought the pain was coming from tendinitis.  This might have sounded more reasonable to me had it not been for the fact that M's hip problems had been misdiagnosed as tendinitis for months before a super sharp x-ray technician saw the real problem and made note of it for his PCP.

Does this sound convoluted? I'm tired and probably not explaining things well.

So when the resident said it was probably just tendinitis, I strongly questioned his diagnosis... telling him that we'd already had that misdiagnosis, and I wanted to be sure there was nothing (mechanical) going on in those joints. Thankfully, about that time Dr V, M's regular ortho came in... he looked at the x-rays, we looked at them together and he found new problems with the hip that was fixed in 2010. (I guess tendinitis is the fall back diagnosis for joint pain when you can't see anything going on!) Apparently some of the bone that was removed from the femur during the first surgery (so the joint could move without impingement) has grown back. AND there is a little spur of bone on the edge of the hip socket that is hitting that new bone. It's been hitting it enough that it's worn a small hole in the bone. :( Poor M... no wonder he's been in so much pain!

Unfortunately we're looking at another surgery at some point to fix the problem... but we are all in agreement that it's not going to be now... or soon... if we can avoid it. We're going to start with a steroid injection into the hip(s) and see if that gives him enough pain relief to put off the surgery.

Dr V put it well during M's appointment when he said to the resident.. "There is no low-risk intervention with this patient." Yup... that about sums up M!

M's also been having more problems with his throat lately... choking on food he would normally be able to swallow. A visit to the PCP ended with an appointment for another swallow study and referrals to an ENT and neurologist. I had been thinking the choking was probably connected to M's tardive dyskinesia... but she (the PCP) thinks it might be the gastroparesis moving further up M's GI system. I hadn't thought in those terms and it's scary to think about the gastroparesis affecting first his gut and bowel, then moving up and affecting his stomach, and now moving up and affecting his throat and ability to swallow.  Scary stuff... stuff it's best not to think about too much.

Ever read Gone With The Wind? Remember Scarlett O'Hara? I'm good at pulling a Scarlett and saying "I won't think about it now. I'll think about it tomorrow"... that philosophy served her fairly well... Except when it came to Rhett of course.



The swallow study is next week, and we'll know more once it's done...

So it kind of looks like we are, once again, jumping on the medical merry-go-round... I'm hoping this time around it's a relatively quick trip and we can jump off again and leave the docs, procedures, appointments, and all that goes with them behind again soon.

too tired to think.... (a cut and paste kind of post)

"Gastroparesis

Gastroparesis is a condition that reduces the ability of the stomach to empty its contents. It does not involve a blockage (obstruction)."

....M's gastroparesis kept him... and me... up almost all night.





"Gastroparesis, also called delayed gastric emptying, is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for a longer time than normal. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract."





I hope he's better today.... he was really sick last night.






"Gastroparesis is a condition in which the muscles in your stomach don't function normally."





Because of interactions with his psych meds, he isn't able to take any of the (few) medications that are known to stimulate digestion. We've tried countless herbal and nutritional supplements/treatments and nothing we do makes much difference.





"There is no cure for gastroparesis. Making changes to your diet may help you cope with gastroparesis signs and symptoms, but that's not always enough. Gastroparesis medications may offer some relief, but some can cause serious side effects."





It's going to take a lot of caffeine to make it through today...

Farm girl hours, blogging, new babies, nasty viruses, and other seemingly unrelated things

During the week I keep "farm girl" hours... I go to bed early and get up around 5:00, when Joe gets up to get ready for work. I get his coffee made and breakfast started, then I get out of the way while he makes his lunch and gets ready to leave. I need to be out to the barn by around 6:30, so I can get my breakfast etc. before the kids (mainly M) get up and I'm "on duty" again. That early morning time, between getting up with Joe up and heading to the barn to feed is my blogging time...  The rest of the day is usually filled with outside and inside work, keeping M settled and out of trouble, working on schoolwork and/or worksites with the kids, and the multitude of other little jobs that make up my day... But the very early morning is mine (mine, all mine, you hear... insert evil cackle here).

But yesterday followed a little different schedule... I was up at 5:00, and E (dd#1) called at 5:15 from the ER. (!!) There is NOTHING like an early morning call from an ER, from one of my children, to get my blood pumping! She had been fighting a nasty stomach virus that had been running rampant through her family and it finally got the best of her and she, her dh, and all four kids were at the ER. I quickly jumped into the car to meet our SIL at their house and take  the kids so he could stay with E at the hospital. I was on pins and needles until I heard back later in the morning that all was well... because of an sweet little complication: E is expecting again. It's early in the pregnancy, and I just so wanted everything to be alright with the pregnancy... and it is! :)

So, I got home around 8:30, quickly did the barn work (poor, spoiled, Murphy and Tucker were sure they were starving!), grabbed a little breakfast (the two cookies I ate at E's just didn't count as a meal...) and by then M was up and I sadly said good-bye to my shower for the day. :(

They didn't keep E at the hospital, she's home and (hopefully) sleeping in right now... I stayed with the grandkids yesterday afternoon and had so much fun with them. They are such amazing little (and not so little) people...

So... all is well here, but I did miss blogging yesterday morning. I've been working to keep a pretty good blogging schedule... in part for certain people (who know who they are) who like to read my blog and keep up with us this way, but also for myself... to have a record of our days. (I've been blogging off and on since shortly after we moved here in 2005!)

Oh well... the sun is up, the grass needs to be cut, and M is still sleeping... so I need to get moving and make hay (or grass clippings) while the sun shines!