Sunday, June 21, 2015

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 ...


Saturday, June 20, 2015

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 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 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 )

Friday, June 19, 2015

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 i better start doing a little pre packing ...  Pray it doesn't happen please... not in the middle of the night at least...

Wednesday, June 17, 2015

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 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...

Tuesday, June 16, 2015

and now we wait on the little legs... and possibly wait and wait and hope and hope

Shea, Tues 16th

Shea came out of surgery at about 4 am.  He had a very painful hour until the morphine finally caught up with his pain and anxiety... but now he's comfortable when sleeping.  He still has significant pain when he's awake...but for most of the day his body has been letting him sleep.

Structurally the decompression was a success.  It was a severe compression, and it has been present too long.  It is unsure which came first the chicken or the egg... but the cage shifted and also there was abnormal cartilage in the vertebral canal above the removed vertebrae that was now resting on the cord.  One of these issues could have caused the other issue when alignment shifted, or vice versa.

Today he is to be free of the brace, and on bed rest rotating from left to right every 2 hours, bed flat, and on ice chips.

THE PROGNOSIS:  what should we expect about return function of his legs?  We are told that because of the severity and time of the compression we have a long road in front of us.  We may get his baseline strength in a few weeks, months, or a year...or we may be looking at a more permanent type of loss.  This will now be monitored and treated as a spinal cord injury that needs to try to heal.

The good news is that we have seen a little improvement in his left quad, he can move the knee jnt and inch or so with lots of concentration and effort.  ( we had only a small quad "quiver" on the
left before decompression )  Also on the R quad we now see the quiver at times when really working hard at it... and before decompression there was nothing at all.

I feel much better now that Dr Sanders is back in town and will be paying close attention to each detail.  I also feel relieved that I took a stand and "dismissed" one staff member from our case who i feel was a key component of not having my concerns addressed and not taking our symptoms seriously, not pursuing diagnostics that i requested.

Shea may be allowed to put the brace on tomorrow and attempt to sit up.  For now his little body is medically stable.  Once we sit in the near future we will see if there is any resolution of the awful vertigo issues, to see if that was related in some way to csf imbalance from the compression.

The team and i have also come to an understanding that shea will stay admitted to some part of the hospital, if we feel he should, until he can tolerate upright sitting for a reasonable amount of time. This will make the transition home more safe and manageable. ( unlike our weekend at home that we just experienced.)

Today has been his quiet rest day, with lots of sleeping allowed.  His work has been his position changes and his breathing exercises.  Tomorrow will bring new goals and hopes.

PRAY FOR:  the cord to rest, heal, calm and return to allowing the nerve conduction to flow through it.

Monday, June 15, 2015

12:20 AM Shea is in emergency surgery.... june 16th

You'll notice there have been no posts since Wednesday.  So much has happened to update about, but so little energy to update with...

Thursday AM when checked over by Dr Sanders Shea's very weak legs were even weaker...but still moving... by Thursday night the movement was almost gone, and Friday through the present it remains absent. Dr Sanders had left town to teach at a conference in NYC.

Also we were battling with the vertigo and pain control... There were so many things to prioritize.

His shunt was checked and cleared.  We were discharged from the hospital Saturday with a medically stable boy who "just had vertigo" and side effects from a long hard 12 + hour spinal surgery.

While still in Strong on Friday, and Saturday i told anyone who would listen that Shea couldn't move his legs anymore... the residents told me " it's just a side effect of surgery, be patient it will eventually come back"  I asked for xrays, or nerve conduction tests, .... "it's not needed"give it time was always the answer.

I went home but never unpacked my suitcases, and even had a sitter go fill the van with gas.  I was unsettled and needed to feel prepared.

I also called on call ortho on Sunday when we were home because the vertigo had gotten worse. They said give it time.  Monday AM I spoke with the ortho office and by now Dr Sanders was home and by afternoon he called me back directly.

Finally after Dr Sanders heard my concerns, there was no question, we were headed to the emergency room. The staff knew all about our arrival and we were speedily progressed to xray, put on IV and nothing to eat or drink. Over the next 8 hours little man had also had, an MRI and a CT scan.  He was admitted to a 4th floor room and then down to pre surgical.

His spinal cord is infact compressed, and likely has been since thursday night.  As of 12:20 they have taken him into surgery. Dr Sanders with 2 neuro doctors are preparing now.  I am very confident in Dr Sanders ability and wisdom, please pray not for shea only, but for every choice and movement that the surgeons make.  I am not at all pleased with the decisions that were made by other staff last week leading up to our discharge.... but I am looking forward right now.

The hope is that after decompression and time that the movement of shea's legs will return.  God please restore my son to his active, mobile, fast, all boy self.  Restore his cord, his nerve function, his mobility.  Protect his body medically through this whole ordeal...

Once Shea is through this surgery, he could possibly have another that needs to be done later this week depending on if hardware has to be removed or added.  The hardware that shea would need if the current devices aren't adequate are not in the hospital now as they are ordered ahead of time for planned surgeries.  My hope is that this will not be needed.

Pray for his spirit, he was a wreck, and kept telling me, "mommy i love you, don't leave, I don't want anymore surgery"  Little man has had enough...   I will never ever stop being the mother who fights for my child until the issue is heard.

I will try my best to keep you updated....  

Thursday, June 11, 2015

post op day 3

Progress of the day:

This am the fever finally broke... it's back now, at 100.1 (tylenol on board) with a strange rash that we are monitoring, it's itchy, so we're wondering if it's a reaction to the pain medication?

IV hydration has been dc'ed.  He's eating a bit better today and drinking enough.

morphine pca has been dc'ed, he's on oral narcotic pain med w tylenol every 4 hours this is an improvement.

With creative measures we were successful in the poo department... let's just leave it at that!

Shea's brace was adjusted, and although he still hates it, it fits much better.  He was able to sit up in the chair for 1 1/2 hour each time.

It looks like there is a good chance that shea won't tolerate his own wheelchair for a while, ( too upright, not enough support ), so we will rent a recline back  wc with more support for the first month.  ( same type he had after his hip surgery )

Please pray:  Each time we sit him up more than 45 degrees he becomes very dizzy ( room spins, sweats, nauseous )  It seems like an inner ear reaction.  It takes a good 15 minutes for this to settle from severe to tolerable.  Also the first 10 minutes or so of sitting up his thighs have severe pain. Little man needs all of this to settle down so that he can make progress with his mobility and function.

also pray for his spirit... the pain and the vertigo like symptoms and the brace are wearing him down. Seeing him struggle so much is very hard for this mom too.

I hope tomorrow we will start to see some improvement in his ability to move his legs, they are very weak... that would be a very uplifting.... he is very frustrated that he can't get his hips and knees to "listen too him" like they used to.

The visits, cards, gifts and prayers to shea have been so appreciated and a nice needed distraction for him ( and us!)

until tomorrow...

Wednesday, June 10, 2015

A (miserable) day full of improvements!

Although Shea had a pretty rotten day, it was in fact full of good progress.  We are still on the PICU as I write this wednesday night.

Shea's pain is still quite significant at times, but we are learning how to manage it better and use some strategies to help him relax a little.  He is finding times where he's feeling well enough to watch part of a movie, or talk a bit, or play a for a few minutes quietly.  ( I think today was a "four 1/2 smile rating" )

He is having trouble sitting up straight because the room "spins and spins and spins".  He tolerates 45 degrees ok... but vertical is pretty awful for him right now, causing him to cry and become very anxious.  I'm thinking maybe inner ear from the 12 hours face down and then another day and a half of bed rest... hoping that will start to clear up tomorrow.

The cause of the breathing problems ( and maybe the fever ) was confirmed to be atelectasis. ( small scattered patches of collapsed lung tissue )  It is one of the most common side effects of long surgeries.  He had just been under for too long and required too much IV fluid to keep his blood pressure up... It sort of flooded his system.

This has shown improvement today, they decreased his iv hydration that he's still having, and because the back brace came today he was able to spend some portions of the day at 45 degree angles, or upright with support.

His sats are doing pretty well without oxygen today if we keep him relaxed.  

The good news about the brace is that it's here, so we can not be on such strict bedrest and this is helping his medical status start to progress.  The bad news is that after using it for a day we're realizing there are quite a few size and fit tweaks that need to be made so that it's not causing pain in his ribs and pressure points that make it hard for him to take deep breaths and stay comfortable. Hopefully orthotics will be here in the first half of the day tomorrow to help make these changes in the lab.  We are cheating a bit and letting him just use the back half of the brace and monitoring his movements closely.

The fever.... is still there, but low grade on tylenol... so prayers that by tomorrow that takes a hike as well.

Foley is we're back to intermittent straight cathing.  Drain tube is out as well!  We are also down to one IV instead of  2.

We've started the transition to decrease morphine, and oral pain meds have been started.  He was also upgraded off of liquid diet.

Lastly, he still has motion in his hips and knees which was a huge prayer, however they are very very weak.  I'm not too worried about this now - i'm sure it's a combination of the bedrest, the pain, surgical inflammation around the cord,  etc etc... but sure would love prayers that it is a temporary surgical side effect and atrophy, and that his nerve roots and lower cord are intact.

That about all for now, our goals for tomorrow involve getting the brace adjusted so he can tolerate more movement, working on the dizziness when upright, trying to get off the morphine, and getting off of IV fluids, and !poo!...  all 5 would be super duper.... but you know... gotta be flexible.

Many thanks for all the notes of encouragement and prayers.

PS I spoke with danielle on the phone today because i'm missing her.  She was happy as a clam at respite and really couldn't spare me too much time because she was too busy being social with her friends! 

Tuesday, June 9, 2015

Post Op Day One for Shea (aka Rocky)

Reporting in for our little man.  He is quite miserable today.  I think i saw three half smiles today.
For the first half of the day things were going along decently.  The arterial line was removed. Unfortunately no back brace no sitting up allowed.  They say it will be completed by tomorrow morning.  I'm looking forward to that when i wont be as nervous each time I help him change positions ( back, left, right repeat!)

Thank you to some special visitors from rookies and team grandpas / grandmas.  Also an early visit from Rose so mommy could do a fast coffee and toothbrush run to the first floor!  Shea was pretty out of it when some of you visited, but i know he loved seeing you, and that it provided him a bit of distraction from his distress.

About noon I noticed he was getting more uncomfortable ( possibly the anasthesia wearing off).... then his breathing would get rapid,  his 02 sats would drop and it was turning into a hard cycle to break.  We are keeping up with the pain meds, and at times it seemed like the anxiety and breathing was more of a problem than the pain.. We tried adding some valium to calm him and relax his breathing but didn't seem to do much, so then added oxygen and he went quickly from the 80's to mid 90's and he seemed much more relaxed after this..

I breathed a sigh of relief, and then noticed shivering...the tell tale sign, and bam - fever of 103.4. with tylenol on board.  We do have it down to 99.5 now.  It could be a typical post surgical "my body has been through the wringer" fever.  We are however doing a urinalysis, and keeping a close eye on his lungs and incision.   Depending on the course of his first tests, and how his fever trends will help us decide what action to take later today and tomorrow.  Whatever the case, really hoping to get sitting and moving a bit more tomorrow.

That is about all for now.  Hopeful for a quiet night.  Happy to get a few minutes of lovin' in with emily today.  Missing my Simon and Danielle... As always thank you for checking in and for all the prayers...

A long 12 hours for little man

Shea reported in for surgery at 6 am monday.  He was very nervous and anxious about the whole ordeal, but knowing that presents would be in the near future helped him find a silver lining.

They did let me go back to the OR with him until he went off to sleep at 7:40.  An initial stall occurred as he spent the first two and a half hours under anesthesia while the team combated problems with inserting, iv's, arterial lines etc.

The incision was made at 10:06.  Dr Sanders worked meticulously on shea until 8 pm monday night. Little Man was in surgery for just over 12 hours, with about 10 of that being the spinal ortho work.

A few reasons the surgery doubled in time from initial estimates:
-  Dr Sanders discovered the deformed portions of vertebrae he needed to remove were more cartilage like than bone like, and removing it was more risky and time consuming.
-  When an ideal full alignment correction was made Shea's spinal cord would lose electric signal to his lower body (likely because his cord has never been completely straight and doing so caused too much stretch or tension on the nerve fibers)  It was decided that some amount of curvature would be left to keep the spinal cord functioning well.  Dr S reports he is still very happy with the new position of the spine, and the integrity of the fusion

Shea was in recovery until 1130 pm, and then transferred to the PICU.  His pain is under pretty good control, and for the most part his vitals are quite stable.  His neuro checks are still good.

It looks like there is a chance his back brace won't be ready until tomorrow because of how very late it was last night after surgery when he could finally be measured for it.  Fingers crossed... if it did come today he could start to sit up and be visited by PT,... and that would help get bowels and internal "stuff" ( vague highly technical term) moving better and help with pressure relief/skin integrity, but for now we are still allowed to re position him from left to right side lying every 2 hours.

For today, he will be allowed to start liquids, juice etc, and hopefully the arterial line can be removed. Everything else will likely stay put for now.

Thank you a million times over for all the cover we have had in prayer.   I am so pleased with how well he's doing so far.