A good day
The boy did great today. Still taking 3 pain meds in addition to a few other things but handling it all like a champ and seeming much more comfortable.
We loved seeing a few smiles and laughs here and there, especially when his buddy Malcolm (our service puppy) came for a visit.
Hoping to get home tomorrow!
Ps – I never knew it was possible to love a hospital bed…but this is a GREAT bed for our wiggle worm!
Now to figure out how to recreate this cushioning at home. 🤔
Hospital nights
I seriously have no room to speak here. I have dear friends who have endured month upon month of crisis in the hospital.
This is not a crisis. We won’t be likely to be here for long. But it was a bit of an uncomfortable night for Blue with a fair amount of breakthrough pain on maximum doses of meds.
The precious champion of a boy is sleeping now though, so I’m going to do the same.
All done
The surgeon told us that all went well!
Blue is now recovering in a room. And when this tall boy’s bed wouldn’t fit through the door? Dad was on the floor in his bunny suit before the crowd of nurses even knew what was going on. (Narrowing the frame of the bariatric bed.)
Pain is quite an issue. Incisions all across chest, and all (and I do mean all) over his head. We counted 50 stitches last time and I imagine he has at least 3 or 4 times that now….and I have no desire to count them.
The good news is that (thanks to our friends with Kernicterus who also have a rough time with pain meds) we’ve found a pain med that is helping so far.
Chewie, unfortunately is out of commission. He took the blast when Blue got sick to his stomach, but iron man is standing in now.
Our sweet funny boy with the horrible hair cut had big smiles when he saw his new DBS equipment. He is something else!
Blue will get his DBS turned on some time next week.
We are so grateful that the surgeries are behind us now. God has truly blessed us in so many ways.
And the shell-shock is still there. We cannot quite compute all that has gone on…today, this month, the past 11 years.
Let the recovery begin! And may the pain be under control as the anesthesia continues to wear off.
It has begun
Daddy took him back around 9:30.
They are being careful about the cochlear implants and had to take time for additional imaging and planning.
They made the first incision around 11am and it will probably take another 3 hours to get everything in place.
DBS 2
It’s been one of those weeks. Twists and turns that leave you feeling a little shell shocked or gut punched or both…but not completely ignorant that you are surrounded with blessing.
I still haven’t packed and can’t seem to make myself do it, so while I procrastinate into the 11th hour, I might as well take the time to give you a just the facts ma’am summary of tomorrow’s events.
Tomorrow morning (Thursday 9/1) we report in at 7:20am for the second phase of DBS, Deep Brain Stimulation.
The procedure is likely to take at least 3 hours. (Apologies in advance if this is TMI, but understanding this means spelling it out.) They will reopen the 2 lengthy sutures on the top of his head and then thread/tunnel wire beneath the skin – along the back of the head, neck and shoulders. They will also install the 2 pacemakers/neurostimualtors/batteries in the subclavical space of his chest and connect the whole system.
The major work in the brain, this unbelievable appliance, has been put in place. Tomorrow our neurosurgeon plays electrician and carpenter, creating new spaces, laying wires and getting it all connected to the power source.
This tunneling and the large incisions on his head and chest can certainly be painful, especially when you have a tense body that moves against your will….not to mention new equipment on the back of a head that you regularly thrust against a headrest (ouch!!!).
We’ve recently tried pain meds with some bad results, so along with success of the surgery and remaining infection free our prayer is for pain management, a tricky beast for many kids with Kernicterus who adversely react to most pain medication.
It is uncertain when the DBS will be turned on, but we are praying that this will be sooner than later, as it may help with Blue’s tone and ability to recover from this surgery.
Also, please keep this multidisciplinary surgical team at Childrens Mercy in your prayers. They are so incredibly talented. We deeply depend upon and are so grateful for them!
A fun little video of Blue talking about DBS last month. I ADORE his voice and his bravery!!! https://instagram.com/p/BH3ipLqABNs/
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!
Miriam
I'm a special-needs-mom that is forever diving in over her head...and finding grace! Our life has been rearranged by newborn jaundice, of all things! I'm a fan of catch and release in all it's forms, - on paper, behind a lens, etc. There is a glimmer on the shards of broken things, or more like - rearranged ones.
a Rearranged Life 