A Birthday? 

The girls begged me to let them stay home to celebrate their brother’s birthday. I felt so wiped out.  I knew I would be shooting myself in the foot to give in. I could not give in, no matter how they begged. 

You see, I’ve finally found a medicine that helps with my neck spasms but it also makes me incredibly tired….so I knew they wouldn’t be missing much..unless watching mom take a dozen mini naps and turn into an monster when they needed me would be “fun.”

So the no nursing/help situation plus a week of quarantine to prevent infection makes for a very slow and unexciting mama nurse…especially on what feels like a big birthday. 

Not to say that Blue didn’t have fun enjoying some birthday gift movies etc, it’s just that my mama guilt was raging even subconsciously as I slept on the couch beside Blue. 

And FYI this is also during the time our neighbor was mowing our yard. (And I haven’t even told you about the food and snacks and hugs and love from so many corners over this time.) #notallbad #blessed.

But right at the time I was getting that gift outside my home, I was melting down a bit inside. I messaged a friend just being brutally honest about the tough time I was having. Right there on voxer, she began to pray for me and as she prayed I got a text. 

The text was from a nursing student that I had forgotten about verifying that I needed her to come over in an hour. YES! Yes please!!!

 So despite the fact the birthday boy was running at about 40 to 60% (he still gets tired easily from last weeks surgeries) and his sisters were super needy – we were able to get through target (have an amusing happy birthday FaceTime w the grandparents while still IN target with hands on all items in the party aisle) and get him a few gifts, and specifically selected graduation and job well done cards.  Then specially requested dinner at sonic and we made it home in time to clean his incisions and celebrate before he passed out!! 

And my goodness, it was so awesome to have nursing skills in our home! 

So funny how your day can feel like utter crap and failure and end with the essence of celebration you long for – to have for that incredible gift of a child God has entrusted you with!!!

Blue, i am so very thankful for your life and the way that you use that winsome smile to bring light and joy to so many precious people in our life!!! You are something else,  boy!!!

The next surgery is Thursday. Pain management will be our primary concern along with safety and avoidance of infection. 

And God please send us some awesome skilled help! (We will start interviewing next week.)

Home

Home.

Facts first:

Today Blue is slighty under the weather (or maybe just wiped out) but we got to go HOME. No better place!

9/1 we return for round 2. If you have no idea what I’m talking about, read here.

As for my normal touchy-feely crap:

I’m exhausted.

My creative side is kind of been on shut-down. The nurse-mom is on hyperdrive. 

It’s still all surreal and I’m not sure I’ll ever catch up on all of the love on fb and elsewhere that has been outpoured.  It BLOWS ME AWAY!!!!  I’m so incredibly grateful that Blue has gotten through this phase successfully.   Prayers.  God’s grace.  The shelter of his wings.  We’ve seriously been so well taken care of!!!

And if we are being honest, I’m also scared…of germs (and I’m not a germaphobe, at all, so that might be a problem), of complications, of that cough, of finding new help, of next steps, so many things big and little.

And yep, I’m totally impatient. I just want my boy to be recovered and get going with DBS…but we’ve got another kind of complicated surgery ahead and more healing and waiting and then we can start the process.  So weeks of recovery and lots of missed school. 

But I also see that God has brought us through some scary stuff, He will continue to carry us onward and that there is some amazing possibility right around the corner.

 

2 down

DBS 1 is complete. 

Blue didn’t wake as much as they needed so placement is not as certain as would be ideal, but imaging was great (from Monday’s MRI and today’s CT) and we are hopeful that they got these electrodes in just the right spots.  The surgery took approximately nine hours.

Blue is in the PICU and will be monitored through the night. 

Tomorrow he may be able to have visitors, but it’s too early to tell.  We will likely be here a couple days.

9/1 Blue will have his 3rd surgery to place the batteries/pacemakers placed. They estimated that surgery will take about another three hours.  (It’s more complicated than most because of the cochlear implant’s and having to route around them and go behind his back.)


Later in September they will be able to turn this whole system on and begin to see how it works for him.

We are very grateful to have a boy on the other side of this surgery and flashing some smiles!!!!! 

 

1rst lead

The first lead(of 4) to the GPI is in. They weren’t able to wake blue sufficiently to verify placement. The imaging that they obtained on Monday is some of the best they’ve ever seen, even with the cochlear artifact, and they have good reason to expect that this will help him.
Several more hours to go. 

It begins

9:30 AM they took Blue back. They’ve completed his CT and will be drilling into his brain in the next 15 minutes or so. Probably in the next hour they will begin to wake him up and start testing some of the results. This process will continue throughout the day.

They said the planning went very smoothly this morning and even with the artifact from the cochlear implant’s they’re able to see everything they need and plan to get to all of the places that they need to be. 

Prayers are of course for accuracy and especially for communication and for Blue as he wakes up in an OR with a bunch of masked faces and bright lights around him. We’ve prepared him for this and he is an amazing brave boy and we have every reason to believe he is just going to rock this! 

EPIC 

 

Epic.  A friend used the word today and it sounds right.  Aside from a very traumatic car accident, I can’t imagine a scarier or more amazing surgery than DBS, and tomorrow this epic journey begins.

Today has been a good day. Not too much pain from Monday’s stitches and we got some of these lovely smiles!

Tomorrow morning at 7 AM we report in for DBS phase 1 and we are praying that it all will go super smoothly and they can combine DBS phase 2. This would make one recovery which would benefit Blue in many ways.

This is BIG in so many ways.  Although we won’t see it right away (the thing won’t be turned on until later this month or in early September.)  This is where the life changing miracle can happen.  It depends upon the wonders of technology, surgical skill, the neurologist’s guidance, the ability to rouse Blue in and out of anesthesia, his ability to respond and indicate how the electrical stimulation is effecting him (yes he will be awake for part of the surgery – multiple times, and this prolongs the process depending on how easily they can wake him up and get info on how he feels and whether he can squeeze a hand, open a hand, etc), infection avoidance…many many things.

We will not be surprised if Blue is in surgery for 12 hours.  It will be a long day and then will come the challenge of pain management.  Because of Blue’s brain injury, most pain meds have adverse effects for him, tensing muscles and upsetting, etc.  We pray we can find meds that can help control pain and ease his recovery.

After surgery, Blue is expected to be monitored in ICU for 12-24 hours.  He is then expected to be in a regular room at Childrens for 1-2 days.  Given his past with pain management these numbers may not be accurate, but the team at Children’s Mercy is very possibly more well versed in pain management for kernicterus than any in the world, so we will pray and we will see.

After Blue has been moved from ICU we will let you know about visitors.

Our girls are in good hands with my mom until Sunday.  They worry and pray for their brother and are concerned about us all being in the hospital, but they are excited for their brother and some Mom-mom time too!

Beyond that we pray for nursing (we were just approved for this) will line up and that we can find the additional help we need.  Next week we don’t have help lined up, but we know it can come together quickly…and we really don’t have much idea of what Blue will need.

My husband and I are holding up well (or maybe we are complete messes…and maybe it depends on the split second).  We are hoping and working to make this all come together. He will be able to take a couple days off work.  My health issues with my neck, knee and ankle are alright.  I do have to be careful in managing stress as it triggers neck spasm very easily.  My knee surgery can wait until Blue is well on his way to recovery.  With my brace I could even put it off for a year or so, if needed.  My surgery last month has healed well, I have no pain from that and it has helped in reducing neck spasms.

We very much appreciate all of the kind thoughts, prayers, and support poured out from dear friends and family near and far!!!!!

We are not safe.  None of us.  But we are loved by an awesome God and we very much look forward to seeing the benefits that this surgery can bring in healing our boy!!!!

 

Creative solutions 

We owe many thanks to a construction worker and nurse who found our van keys after a good bit of frustrated searching. (You know the relief of being discharged and how ready you are to get home and REST?  …well it can contribute to angst over lost keys. We survived.

Eventually, thankfully, prayerfully they were found and we got our boy home for a few hours of sleep. 

Didn’t love the bandages, so he took those off himself around 4am this morning. Quite a feat given his movement disorders…but he must have been very bothered by the head-dressing, or maybe particularly distressed by the whole Princess Lea look.  

The incisions are longer than we thought (about 2 inches each).  Poor guy would really like to get his hands on those stitches, so we are working on creative solutions to keep those hands off. 

We were able to put his cochlear implants back on for a bit today. He did indicate that the incisions bother him but Tylenol is managing things okay for now. 

This afternoon he was able to use the cochlear implants again for about an hour and let our boy HEAR. Recovering without sound? It seemed tough. (Challenges like this, his perseverance through them, and all that Kernicterus kids endure reminds me that he belongs to an elite class – #everydayOlympians.)

MRI down. DBS coming right up. We check in Thursday at 7am. 

Grateful for all of the prayers and support and the return of those smiles that let so much light in!!!!

1 down 

He’s up! After 6 hours under anesthesia and 2 hours to wake up, we are back with our boy and all is well!!!!   MRI complete and cochlear implants back intact. 

Home and groggy. Going to take it easy and recuperate for DBS phase 1 Thursday. 

Later tomorrow he should be able to put his cochlears back on and hear again. For tonight we pray for rest. The propophol hit him pretty hard.  Sweet babe!

pre DBS Surgery

image

Today his Sunday buds layed hands and lifted prayers.  (Are there words for this kind of blessing?!?!  Hands. Prayers. It makes the ground beneath my feet unsteady in the best of ways.)

Tonight we shave his head, we prepare for the scalpel.

Tomorrow isn’t the BIG day, but it’s the beginning.

Tomorrow’s surgery will begin at 1pm.  They will remove the magnets under his scalp (components of the cochlear implants). He will remain under anesthesia for the MRI.  After the MRI they will take him back to the operating room and put magnets back into the cochlear implants and stitch him up.  We should be back home in the evening.  (Thursday we will return for DBS phase 1.)

Our prayers are for:

  • Avoiding infection
  • The correct scans that will not harm him or his cochlears
  • Good clear images that will guide the DBS surgeons on Thursday (the BIG day)
  • Overall safety and success

Now for the whole schebang I have a prayer list that could span states…so many details. So many microscopic things that need to line up.  They can all be summed up in one word – miracle.

And my soul.  I could barely breathe in the baking aisle. The birthday in 2 weeks. Where will my boy be when he turns eleven? I crave safety, but safe we are not.   We are out on a rope here. Out on a rope with a strong hand to sustain, I think.

I believe. Help me in my unbelief.

miracles.

See previous post for details.

{Our boy should go home tomorrow evening and head back to the hospital Thursday. 

From Thursday he will likely be in through the weekend.  He may not be able to have visitors until later Friday or maybe Saturday.  He is expected to spend some time in ICU after surgery.}

DBS, coming right up

 

Deep Brain Stimulation.

Almost as soon as we got the verdict of kernicterus, in those early years, I read about a case of dystonia being cured by DBS in an alumni publication.  Those pictures.  That boy with the dark hair.  I read this over and over.  He went from a wheelchair back to walking.

A wheelchair to walking.

(We’ve since learned that our case is different and this would be a LONG shot, but still worth trying for even a fraction of that, and you can read on to see why.)

We’ve been studying this option ever since that article.  This spring, as we maxed meds and began to see orthopedic issues arising, we decided that we could wait no longer.  There is a big need to fund this research and while we’d like to wait longer, our time has come.

There is no other case we can find quite like it – the cochlear implants, kernicterus, 4 leads.  Many of our questions may not be answered until we take this plunge, but take it we will.  Nerve wracking as it is, we have a lot of confidence in the amazing group of surgeons assembled on Blue’s team, and we are very much encouraged, seeing our bud Lexi go through this before us.

A close friend recently told me, “At this point for Blue, every move you take forward has high stakes.”  She’s right.

As friends offer to pray and seek to understand more about this process, here is the info. 

What can DBS do?  For a kid like Blue, this can decrease tone and involuntary movement, increasing their ability to control their own body.  Let that sink in for a second and think…miracle.

How much benefit?  In our case – no one knows.  This could be (and is maybe more likely to be) a marginal improvement, a small % benefit….but these are HUGE things in my son’s life. A 10% increase in the ability to hold something, to reach, to sit?  A 10% decrease in tone, keeping those half a dozen orthopedic surgeries we keep discussing at bay or maybe rendering them unnecessary (high tone and involuntary movement wreaks havoc on your bones as they grow)?  In short, this is a miracle.  In the best scenario DBS uses electricity to trick the brain out of the movement disorders.  We pray and believe that this miracle will be WAY beyond any expectation.

How does this work?  In Blue’s case this will mean 3 surgeries.

1 – This will be the pre-DBS surgery, August 15.  PrintEssentially it’s an MRI sandwiched between two little surgeries.  He will be under anesthesia for all of it.  The MRI will be used to map the path they will take in his brain during DBS surgery, but you can’t have magnets in your head for an MRI can you?  So first they will first surgically remove both internal cochlear implant magnets, place spacers and stitch him up.  After the MRI they will take him back to the OR, put new magnets into the cochlear implants in his head and close him up again. Maybe a few hours under, and then we should go home same day.

 

2 – We will call this DBS part one, August 18.  This surgery is the most intense of the 3, by far.  They will spend the entire day in surgery drilling and probing deep into his brain to find the perfect locations for the “leads,” the wires that will deliver the electricity to the damaged spots in his brain.  In most patients they place 2 of these.  In Blue’s case they will be placing 4, in the VL of the Thalamus and in the GPI of the basal ganglia.  Blue will need to be awake and responsive for part of this surgery and we are not yet clear on whether he will be able to hear for this.  After this surgery is done he will need to stay the night in ICU.  This will be approximately 2 nights in the hospital, maybe longer.

Pain management is often difficult for Blue, given the way that his body will become very tense and worsen the pain.  Pain meds have tended to have a reverse effect in the past, only make the problem worse for him.  We pray that for both of these surgeries this will  not become a big issue, prolonging his hospital stay.   We want the boy comfortable and healing well!

3 – DBS part two, September 1.  In this phase they will be installing two pacemakers/batteries/neruostimluators into his chest.  These devices will connect to the new “leads” installed in his brain and will be the source of power for the whole crazy thing.  This is the most painful (and pain management has been very complicated, to say the least, in the past for Blue).  These will go into his chest in the subclavical space.

When will this start to work for him?  In September, they will begin to turn this on.  (September also marks 11th anniversary of his brain injury (kernicterus), how is that for timing?  From the hands of the surgeon, a great outcome would be no less from the hand of God.)

dbs

This will be a PROCESS.  From here on out, we will charge batteries in our son’s chest every few days.  Appointments with the movement-disorder-specialist/programmer/neurologist will ensue.  These will typically be 3 hour long appointments and they will be intense…lot of physical effort with weird new electric current going through his brain.  Sometimes they say it feels like sticking your finger in an electrical outlet…but on the better days it will calm his body and give him more control.  It will take patience and intensive therapy for months, years to re-train the body.

Even as I say this I think of the gains Blue has made over his life, the little miracles like getting rid of the j-tube, switching back to the G-tube (stomach tube feeding a versus the intestinal ones). I think of the ways he has worked so hard to prove himself in school, over and over again. We give thanks for God’s provision in the past and we look for it in our future.

What does Blue think?  This kid.  He is by far the bravest and most adventurous person I’ve ever met (and I’ve met his father…so we are saying something here).  He knows it is no promise, but he is ready.  He can’t wait, actually, like literally can not wait.  He’s sat through every one of these appointments, including the ones with the orthopedist where we discussed all of those surgeries on the horizon.  He knows that he’s already maxed the adult dose of his muscle relaxant.  He’s more than aware of many many medications that we’ve tried that didn’t help him.  He perhaps knows more about this surgery than we do and he has hope and a lot of it.

 

 

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