slow and steady wins the race

I've been wanting to take a moment to update you on Shea's recovery lately.  We are still being patient and reminding ourselves that cord compression healing can be slow and take months...but he is still making progress!  Almost every week we see one or two new struggles conquered that he could not a do few days prior.

His endurance for mobility on his hands and knees has gone way up.  He's no longer falling down onto his belly in quadriped because of his hips giving way.  He is back to getting from point A to point B in our yard.  The sudden increase in shea's dirty laundry is a happy change for this mom!  His speed is even improving and he's not tempted to scoot around on his butt like he did a few weeks ago as often now.

When he is moving on his hands and knees, he can now advance one hip and then the other like he used to!  This was impossible for him two weeks ago.  He has to focus and work at it.... but he is doing it!  He's also getting in and out of his wheelchair with much less effort and strain completely on his own.

Many improvements we've seen in the last couple of weeks are at least in part, directly related to a decrease in the spasticity of his hips that we were struggling so much with.  It was really limiting his progress for a while.  He started using a special positioning pillow while he slept at night to keep his legs out of the "tight" positions.  He didn't love it, but it really decreased the time it took every morning to get his legs to loosen up and cooperate.  I am hoping this decrease in spasticity continues, and that it doesn't get problematic again.

Now that the tone is getting manageable and shea is spending some time weight bearing on his legs we notice he has a very significant leg length difference.  (maybe bc his spine is now straight from the scoliosis correction, previously "even" legs are now uneven because the pelvis is in a different position.)  If you notice pictures with one shoe on, one shoe off, or weightbearing with a book under one foot....that is why!  It's hard to stand on weak legs if one isn't touching the ground!  Once he finally gets the ok to stop wearing his back brace and we can start to use the HKAFO's (long leg braces) again, we can correct this with brace adjustments and a shoe lift.

The supported standing, with shea using both arms to hold himself up has progressed from seconds to minutes :)  We still have to stay close as his legs can give out, but it's progress none the less.  Our goals will be that he can start to stand with only one arm support, so he can use the other arm for play and function.  Also, that standing would again become a preferred position and not "this is too hard i hate it" type of activity :)  The tall kneel strength is also coming along as well.

This week, we finally have started bringing in an additional physical therapist to work with shea twice a week.  Shea is getting a little sick of mom playing PT and a few times we possibly weren't each others favorite people!  For mom the realities of juggling work, managing the other kids, the medical cares, doctors appnts etc meant that some days PT wasn't getting done quite as much as it  ideally needed to be.  That is why we have a new face around here these days.  Shea enjoyed her quite a bit, and publicly declared she was "more fun than mom" during PT time.  That is fine with me!

The cord irritability is still affecting the bladder etc, and we are treating for a UTI currently.  It was caught early though, and i think it should be a quick fix.

I could go on and on... but those are the main points.  Thank you for continuing to pray him and us through this long journey.  I'm very thankful that we continue to see progress so he is motivated to keep on working hard at it.  We've also had lots and lots of red tape about getting that blasted stander that he needs....so please pray those road blocks will be lifted.  Everyone is sick and tired of getting weekly phone calls from me!

Hopefully the next update will bring news of a "back brace burning party", or something equally as thrilling.  Although he has his moments... i'm still in awe of this kid's resilience and for the most part his positive attitude.  Wish we could bottle that!

We are not consumed

This I recall to my mind, therefore have I hope.  It is of the Lord's mercies that we are not consumed, because his compassions fail not.   - Lamentations 3:21-22

I write from a different place today than i did a few weeks ago.  

Shea's pain is much better, and our little courageous fighter can now try new things, accept new challenges and push himself because he isn't drowning in pain.  This makes mom very happy.

Although he is still unable to bear weight through his legs in standing or kneeling, he is making progress in many other ways.  ( as those of you know who have been subjected to my facebook videos!)

Probably amongst his biggest accomplishments lately, is that he is tolerating his every day wheelchair much better, and at times propelling it himself!  He can roll from left to right without help.   He can also get up into hands and knees on his own now... andhe has a new "scoot" that he has taught himself which can get him 10 feet or so at a time.  

Shea is also getting out of his wheelchair to the floor on his own, pulling himself up into sitting position, and in general spending much more time out of bed!

Since my little man is more comfortable, and making progress that i can see each week, mommy is coping better.  I have less fear and more hope.  I can focus more on the progress and focus less on the "what ifs".  For this I am very thankful.  Recovery is as much mental as it is physical for the "patient" and the "caregiver".

We do have a very irritated screw from shea's spine which is causing a pressure "hot spot" and we are having to be very careful that it doesn't open up and form a wound.  He's been swimming to exercise his legs and trunk as well.  Also, drum roll please, he's figured out how to drive his jeep again!

Shea also begrudgingly can put on his own braces and socks... although he's not so motivated by that!

We await his wheeled stander.  I appears it will be at least another month and a half before we get through all the insurance red tape... so we try to be patient.  He continues to use a borrowed one each day, but it's too small for him and causes some pressure areas in regions that it shouldn't, so we must limit his time it it to prevent sores.  I am very glad we have it though, it is really the only way to truly get him upright.

His next appointment is tuesday, and we will talk about return to school plans.  For now we have a tutor coming each day to help him catch up on what he missed during the school year.  

I am happy to report that "we are not consumed".  The first few weeks home were at times awful and terrible.  Now we are learning new ways of life and making them ours... for now.   We have our eyes set on the prize, and will keep pushing and perservering until then.  Life is not at all easy, or calm... but we are no longer being caught up the the fury of turbulant fear and pain and trauma...There is hope, and encouragement, and because of that, we are blessed.

The question I don't know how to answer

the cord compression just before the
emergency decompression surgery.

The answer is - different depending on what moment of the day you're asking.

The question is - how is shea's recovery going?

As Shea works through the aftermath of his spinal cord compression, these are some updates on his day to day life.

I will start with all the blessings, and positives.  Let us take nothing for granted, and hope that each small bit of progress is one step closer to getting his full pre cord compression function to return.

-We are happy to report that shea's awful vertigo is still completely gone.
-He is dealing with his loss of function better than could be expected emotionally.
-In regards to endurance and strength, he is working hard to tolerate sitting up, or being in his stander for about 3 hours all total during a typical day.
-He's managing 20 to 30 minutes at a time in a seated position at times.
- now able to tolerate some time on his stomach and also propped on pillows in a hands and knees position
- a few times a day he manages to complete a roll in bed without our help
- now off narcotics and using regular scheduled doses of tylenol through the day and night.
- to date we have some kind of muscle activity in the hip flexors, adductors, quads and hamstrings.
- today for the first time shea supported himself in quadriped ( hands and knees) for 20 wobbly seconds!
-Shea's stander hasn't arrived yet... we have a borrowed one that is a bit too small for him, but he is using it every day, and he is no longer anxious and nervous about using it.
-Shea and the family have appreciated the cards, meals, gifts and visits... thank you so much to each and everyone of you...it's an important part of his recovery.

The title of this entry reflects how our family and home is functioning.  Each and every day we have moments of victory and hope and excitement.  Each and every day we have tears, and frustration, and anger.

Shea and I are working through the hard tasks of learning how to do everything differently, learning how to cope, learning when to ask for help, learning when to say - I'm so sorry, but you have to try to do this on your own.

The once simple and quick task of putting on his own pants, today turned into sobbing tears, venting and anger when i told him he needed to practice this without my help today.  My heart broke into a million pieces when i heard " why did you make me have this surgery, I hate this, I should have never let you do this to me"  Wow... a kick in the gut to a mother who already feels guilt and responsibility...     This is not the whole day, he had many moments of smiles, and outdoor time, and laughter... but the realness of his struggles are here for a good long visit, and are not leaving town quickly.

I've been told by various doctors that we will know the final outcome, "when we know".  When we get to 1 year post op, it will be a good picture of what his actual recovery toward baseline will be.

I'm not really sure that Shea can process this yet.  As a mom, and a mom who works in healthcare... I am processing it all, far too often, and can't seem to get the anxiety of the situation to ever take a back seat in my mind.

I hope and pray that he will beat the odds and not only recover to his full baseline abilities...but that it will happen in a much shorter time frame.

We are not typically a family to mourn disability or struggle... but that may be because we opened our hearts to it in a planned way, knowing ahead of time much of what we were getting into.  This was an ambush, a surprise that we never expected.  It was taking a very functional little body and now having a son who wants so badly to get from one spot in the yard to another, and simply can not.  I watched shea lay on his belly in the grass today and pull with all his might with his little arms to "move" and explore... after 5 mintues of effort and discomfort he had shifted about 3 feet. I also see my son, who weeks ago was qualifying for national competition...now not be able to keep his balance in sitting without support.  I am very very proud of his progress so far, and i am also filled with sorrow and anger.  It's hard to have such opposite emotions in you all at the same time.

I try to let Shea see the brave mom face, and keep the struggle out of sight for him.  I wish we all knew what and when his final outcome would be...we have hope and we have fear also.

So, in general, when someone asks... "how's he doing, how's everything going?"  I struggle to answer. I want to keep positive and hopeful... but i also want to be real.

So ... for now we will say, every day is new, and it will be exciting to see what can happen today.

Prayer requests:
For Danielle - our dear girl is having a great deal of emotional turmoil.  She can't process what is happening when shea is in pain, struggling, doing new things.  Her melt downs are regular and intense...and it's hard on her and the family.  Our sweet girl turns 13 on tuesday... I pray for peace and an even keel for her this year.

For Simon - Simon is the quiet behind the scenes man.  He can occupy himself and sneak off to his solitary place too easily... as we have so much time and physical interaction focused on shea right now to get through day to day tasks... pray that we can manage to keep simon engaged and involved in fun and meaningful ways and that he doesn't get lost in the shuffle.

For Emily- Well...she's 3 and we all know it!  She knows right now that the world is not revolving around her, and can act up and challenge us at times.  She is a precious girl who has a strong personality.  We love her to bits, but pray that as tensions sometimes run high that we guide her and teach her in positive uplifting ways with patience and a gentle tone.

For Shea - a hope filled heart, a drive to do the things that are hard, and for his pain to subside so that he can focus on what he needs to in these next months.  Also for that right leg to start catching up to the left leg.

For Mom- That i prioritize properly for Shea... do i focus on trips to the pool, the nutricianalist, stretching, catching up on school work, pain control, weight bearing??? all needed parts of recovery,but there are only so many hours in the day.  I'm also back to work now... i need wisdom to make good choices for him, while also letting him be a kid, and have time for rest too.  I would ask for prayers for peace, for faith in a good outcome, and that i could beat anxiety and fear.  I also would love prayers for the physical stamina of my body, which is doing much more lifting, shifting, bending than i'm used to...i go to bed feeling like i've just left the gym.  Please also pray for my mom's health too....

For Dad- rest, refreshment, and endurance.  Encouragement, and good nights of sleep... and that he knows how much he is loved during this challenging time.

If you've made it this far... thank you so much for reading and caring... this entry may be a bit too honest, but it's real...and it's our heart.

thank you so much for your prayers and support for shea and the family...

He's rounded a corner!

It's been a good day.  We are still working on pain control, and the legs are about the same as they were yesterday.... however a big breakthrough is that shea can now for the most part sit up without vertigo.  It happened like a switch.  We had been playing a ball game while he was in a kid cart laying on his side.  It involved a lot of arm movement for about 20 minutes.  He even tolerated laying on his back for a few mintues.  Suddenly Shea said - mom, my head feels different... i think i want to try to sit up....   AND WITH HELP HE DID..... NO VERTIGO!!!!

I am over the moon.  I feel like discharge could be within the next day or two now.  We do still have consistant vertigo when he sits up and then looks down, from neutral head into any cervical flexion... but it is so much improvement.   Answered prayers...!!

He is getting more comfortable in bed as well, and a few times over the last day and a half has taken tylenol instead of hycet.  Nights are still rough... and i hope that improves for him soon.  Waking up trapped in his brace and disoriented bc of sleepiness doesn't help much, and sometimes i think it's anxiety, or frustration as much as pain when he struggles at night.

It looks like he has a bit of a UTI growing... and he has a low grade fever tonight on tylenol... but that is something we're staying on top of and hopefully wouldn't prolong a hospital stay.

I'm hoping now that his pain with sitting up will lessen that the improvement in vertigo would make this possible.

Since there has been a significant improvement today with the vertigo for the first time since june 8th...I am feeling like we may not move forward with the csf imaging tomorrow.  It involves contrast being inserted through the shunt and watching flow in various positions, and also sedation of some level.  I don't know that i want to put him through this.... and now i wonder if we really had more of a dural / cord tension / stretch issue...that affected his chiari...rather then the chiari being affected by a low csf pressure issue.    Dr mom has a new specific diagnosis...that wouldn't require any serious intervention. (But i won't go into it in case i am totally wrong!)  Whatever the reason he is feeling much better and I am so thankful and blessed.

Do pray that shea's anxiety about sitting up without support will decrease.  Even though he doesn't get the vertigo today unless he looks down, he was still very traumatized / fearful about sitting up,. We also need his little neck to strengthen.  He's been in non gravity positions for so long that he looks a bit like a bobble head doll currently.

Tomorrow brings morning meds, and personal medical routines for a few hours in the am, then we'll see ortho, and probably neurosurg.... testing is up in the air...and we will watch this uti and pain control...

I would say there is a possibility that we could be sleeping in our own bed by monday night. I sure hope so.   Shea has a long journey of physical and spirit rehabiliation on his horizon..  We need to close the vertigo chapter, so that we can get on to a new phase of life, where shea learns to function and mobilize himself with a totally new funtional level of his ...












+

June 20th ... another day in picu

Thankfully we were not moved to a double room on a floor unit, and now there are some empty rooms and 2 other kids who are more stable than shea...so it looks like we're safe for now and can keep the quiet big room w md's to access 24 hours....this makes mom happy.

Shea's plan: ENT will take him to the "balance lab" and perform a few more tests to absolutely rule out peripheral vertigo, they don't think he has Periph vertigo, but want to do some extra testing to be sure. Neurosurg and ortho are doing some type of radiology testing to look for csf leak.... however the first is an outpt clinic and not open until monday and the second is a test that is done by someone who works monday through friday, and is only called in if it's considered medically urgent... so we will finish out saturday and sunday in a holding pattern, continue to work on pain control, and hopefully on monday start in on some of these tests to get further answers. If the csf test is not the culprit i have also told them i would like them like them to consider comparing the compression of his chiari 2 in supine, vs sitting ( if there is a way to do this?) after i asked for this, a friend who ran shea's case past a neurosurgeon with a great reputation in the US also said he would first test for csf and then chiari tension...so hopefully we're on the right track... OR we could just pray that it would miraculously go away. Yeah - that, that would be good.

LEG UPDATE: The right leg has been the slacker. Today it finally started to show some change... we have gone from a quad flicker ( barely ) to a more visable small quad contraction and about 1/2 of the time we check him he is getting a very small knee jnt motion. (checks are every 4 hours )

shea - june19th

Quick update...

If it wasn't for the awful vertigo I would say we are within a day or two of discharge, when we could start our life of rehabing and adjusting to the new normal with the lost function of his legs, and the patiently waiting to see what would return...

Unfortunately the vertigo is still severe, and constant if ever above 45 degrees of sitting.  The MRI's did not show any obvious explanations so everyone pushed to still consider it an inner ear vertigo, and we even got permission to do the Epley manuever from ortho.... However ENT returned today also and spent a very long time with him... and strongly felt it was not at all consistant with peripheral inner ear vertigo.

So it may have a central cause and tomorrow we have to delve into that.  I tracked down the picu docs and they agree to my request to get a new neurosurgical md consult tomorrow to discuss csf leak or shunt drainage that is too rapid,

His pain is slowly improving, so that's a plus... only had to use one prn morphine in the last 24+ hours, the rest controlled by oral pain med.

Surgical drain came out today.

Legs are the same as i reported yesterday...

Was planning to sign off and finally go to bed when just writing this sentence after lots of googling and convincing... however the nurse just came in and let me know that picu is no officially full, and shea is most stable, so if any other kids come in tonight we will be bumped off the unit to floor status...so i better start doing a little pre packing ...  Pray it doesn't happen please... not in the middle of the night at least...

Shea's progress ( June 18th )

Today's "good things to report"

- foley cath was removed
- although groggy shea enjoyed some visitors
- pain is still present, but he is doing well on a pca pump and oral pain meds...continuous morphine has been dc'ed.
-no longer in need of iv hydration, but does still have iv for meds
-in am he was allowed to have a liquid diet and by dinner regular food
-vitals have been stable
- he was no longer on strict bed rest, but was allowed to return to wearing brace and sitting up, raising head of bed, getting into wheelchair etc.

The dreaded vertigo - many had hoped that the vertigo was somehow linked to the compression in the lower spine and once that was corrected the vertigo would disappear.  Unfortunately immediately when we raise the head of the bed or try to sit him up his world crumbles...room spinning, sweats, anxious, nauseous.  If you remember, they agreed that they wouldn't send him home until he could tolerate sitting for a reasonable amount of time.  Today my mother advocate job was to press the team to not just be content with a diagnosis of inner ear peripheral vertigo...because they never had a clinician with expertise diagnose him with that.  He has a symptom of vertigo...that doesn't automatically mean he has inner ear issues causing the vertigo.  College friend Julie W from Buffalo came to visit and I was thrilled that she was there when it was time to convince the doctors of this next step.  Julie just took vertigo treatment classes, and her jargon and observations helped strengthen our case.  After last week saying it wasn't needed... today they agreed to pull in a neurologist consult and an ENT consult.  ( last week neurosurgery was consulted but they only cleared his structural soundness of his shunt )

Both consults happened in the afternoon.  Both disciplines had immediate concerns during their assessment that warented further testing.  Wed night shea had a head CT for neuro and a head CT with contrast for ENT who suspects a possible vascular componant to the vertigo.

( with the help of google and the keywords  vertigo / vascular and symptoms I have made a mommy self diagnosis.... and am waiting to see tomorrow if i was even close.)  A mother of an ill child has a love / hate relationship with google... bunny trail.

"Fun adventure of the day" - Shea's mean arterial pressure was to be maintained at 65 or greater for the first 24 hours after surgery.( for best cord perfusion) By 4am his body couldn't manage this anymore while he was sleeping...however when he was awake it was meeting the mark.  Our choice was to let him continue to sleep as he had been for most of the post op course so far - but that would mean inserting an arterial line again and giving pressor drugs to raise his pressures.  Our second choice would be to wake him up at 4 am and keep him up till 9 am ...  so we chose the latter... and boy oh boy was that ever fun...

His legs - The right leg range of motion is the same, but he's firing the muscle more automatically and with less strain and effort.  His left leg/ quad ranges from no activity, to quad flickers, to very small jnt movements produced by the quad...

One time today I did have to fight a battle again to make my voice heard.  A plan had been made in the am in regards to one of shea's managements, with rounding doctors and mom. In the afternoon I stepped away to bring equipment from the van to his room and in that time - 1)the plan had changed by a team member who had not seen shea that day,2) something he needed was removed, and 3) a new intervention started that was causing him distress, and pain.  It took expressing my frustration, in a quite vocal manner and going above a head or two... but we got back on track with our original plan.

New "toys" for shea's future- I've started the process of ordering a wheeled stander for shea from monroe wheel chair, so that once we have symptoms resolved he can have a way to be mobile and vertical.

That's about all for today... we'll see what tomorrow holds... answers for the vertigo i hope and pray...