As we leaned over his bed and said bedtime prayers, his hand slowly drifted up, fingers open.
For the first time, my boy, ever so gently, caressed my face. (Previous attempts had quite a punch behind them due to the movement disorder.) This was entirely different and sacred.
Thank you Jesus for the miracles every day!
The laughter, the controlled and tender gesture from son to mother. This new territory that we live in while sisters flit around in fairy costumes and climb doorways….I’ll take it. I will gladly dwell in this place.
There is a corner out there. You turn left and the brackish water curves this way and that. Then you are in it. In the sound. My girls knew what “the sound” was. We’d been going to the outer banks of North Carolina for a few summers. They had looked out on it from a distance. Driven beside it. We’d driven over it – all the scenic bridges. Seen it form the windows of the rental homes we’d stayed in.
But there was something about this time. In the water, rounding the corner, the expanse of water suddenly surrounded them. It took their breath away. What looked exhilarating from a distance was terrifying for my girls. No end to the water. No land in front of them. The still expanse of water as scary as any monster.
Vast and foreign, they were overwhelmed. Too much unknown. My 4-year-old went into a panic. She could not settle down until we were back in the winding canal. The big-ness was too much.
I’ve seen DBS first hand. We’ve watched the ups and downs that our friends Lexi has endured for the past 7 years. We have read about this since our boy was a babe, watched hours of webinars, read many articles. We’ve seen the expanse ahead. But to actually round the corner and be in the water? It’s honestly more than a bit terrifying, and challenging.
It’s no small amount of water we’ve just paddled into.
Settings are tricky. Programming is complicated. Pain, frustration, fatigue, they come and go and it’s going to take time.
When the was first turned on it seemed okay. But then it wasn’t. Our boy was in pain and of course he couldn’t tell us what any of it felt like. But at 4 in the morning after a night of moaning and tossing, my husband and I decided that we had to turn it off. Tears piled in my boy’s eyes in those wee hours of the morning. I saw a different pain in his eyes, a fear that this was all not worth it. Perhaps this was it. We were able to explain that this is trial and error, that it won’t always hurt, that we will keep trying to find settings that work for him.
Today started rough, but turning the thing back on and tweaking settings was very encouraging. He had perhaps his best PT session ever this afternoon. Calmer body with some intentional movements. Hard work. Lots of hard work, and really good work too.
It’s an unsure first paddle into the expanse, but we are not alone. Never.
Ready to go.
Although I had a hard time staying awake on the drive home I was so elated to be outside and to be headed home!!!
And as I pack away hospital bags full of medical supplies it starts to hit me.
I go into full on panic over the setup in in his room, earlier today the same sense of panic gripped tight…about finding my sandals.
Only it’s not the sandals or the messy room. 3 surgeries in 2 weeks. The reality is just now hitting my body like a train.
Acting as nurse/mama even more full time than usual (with a month off school and more recently bedding over a hospital bed for 4 days). So yeah, I may have had a few little meltdowns today. My neck may be back in full spasm, and I’d be lying if i told you I am doing good.
But my boy is doing very well! Aside from the idea that he has a major power cord running along his skull/neck (that might have been source of panic attack 3 today). He’s only taking the heavy pain med once a day and he’s just on Tylenol and Motrin the rest of the time.
His stomach isn’t back up and running yet, and by that I mean I have to maneuver the big boy into like a pelvic tilt and manually get air out of his belly with his G-tube every hour and we are waiting for the bowels to wake up. But really those are expected post surgical things for us and we are very glad to have him home and doing well!
Thank you all so very much for your fervent prayers and kind words and gifts and food!!!! We can’t even process it all, it’s so humbling and amazing to think of how many people are petitioning and cheering for this crazy DBS apparatus to be rocking awesome for our boy and his grand adventure! (Adventures being big scary quests that forever change you and your impressions of life, right?).
Never alone. Always loved. Home.
We asked the kid if he wanted to go home, or no.
He stared intensely at the the “NO” hand.
(We hold up hands as we ask a question, so he can look at the choice he wants.)
Comfy bed. Pretty nurses. Food on command. Both parents to take care of your every wish. Endless TV.
I might say no too.
At the moment he and dad are zoning out to some Sponge Bob while kicking back some eggs, sausage and hash browns.
The doc estimates at least a month of neck pain from all the tunneling, so we will keep up the pain meds. He keeps that shoulder drawn up. My neck cramps up just looking at him.
Normally only 1 or at most 2 wires pass through on each side of the neck. In Blue’s case they had to do 4 on one side. So after they pushed the rod through to tunnel for 1 they then had to expand the space and cram 4 wires through…ouch! But this may make things easier with the cochlears and revising and stretching things later for growth…I hope.
No word yet on when it will be turned on.
Momma may miss these night nurses coming in every couple hours and giving meds… Our stay here has been absolutely great! But there is no place like home, and fresh air.
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. 🤔
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.
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.
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.
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.
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/
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.)