CAUTION...This surgery is NOTHING like you may have come to know as the "norm" from other surgery experiences.
This boy’s laugh can still get the whole room going and he gives loves sharing the joy. This weekend he starts on yet another journey in his life; his 12th surgery in his 11 1/2 years. This will be the biggest one ever; a complete spine fusion from C2 to the pelvis. We also must replace his baclofen pump tubing, which scares me more than the fusion.
We have chosen St John's Hospital in St. Louis, as Children's Mercy, which is minutes from home knows nothing about the proper care of special needs children. They feel that having docs specialize in one thing and then having numerous clinics is what is best for optimal care. I TOTALLY DISAGREE, and have first hand, seen what that type of care does when you have such complex medical issues. A team is necessary to keep everything and everyone on the same page; a team effort is what keeps my son safe and healthy. When I realized their separation of care has now included one doc for the spine and one for the arms and legs, I knew I could never trust them with such a big surgery. The back of mind instantly hit on the fact that my son is a quad by brain default...what if they ran into an issue and said, "oh, that's ok, he is already a quad," sadly, I don't know that they wouldn't. Trust is a big factor when it comes to the care of my son in all we do. The schools can no longer be trusted to educate and offer what is necessary to educate and care for children like my son; and have laws to back them; they don't even offer good daycare (Sycamore in Independence) and have laws to cover the abuse. The aid agencies feel only one mistake, such as leaving a special needs child alone in a running car should not prevent me from trusting them with my sons care (First Call). As a parent, I have a right to hire and fire who ever I want if I feel they are not doing their job, by offering my son their best, no matter who says they shouldn't. When you sell out to politics, you plain sold out and God is who you will answer too, especially when it comes to these little angels.
Anyway, back on track...St John's Hospital is a team effort. Dr David Anderson will do the surgery and has a wonderful team that will follow his word. I have complete trust and respect for all I have met, so know I can learn from them what I need and trust in their decision making for my son. After a hair over a week in the hospital (if no complications), we will then go to Ranken-Jordan Rehab Facility for a minimum of 6 weeks, again, an awesome place with a team that is eager and ready to get your child up and moving and home safely. And YES, THEY ARE GOING TO GET JOHNATHAN UP, back on his feet. Children's Mercy said he would never again get up without fear of breaking one of his weak leggy bones. Seems, he only needs a surgery to correct a few things. We have wasted over 2 years, thinking, hoping, then truly believing their words here, as we saw his legs getting worse. My mistake. WON'T happen again. All our ortho will be done in St. Louis to ensure Johnathan is NEVER AGAIN, sold short because eye has CP.
We will be gone for about 2 months; pray to be home for Christmas. We will be healed enough to be out of the woods, we will be trained and newly educated on how and what Johnathan can do, and we will be immediately ready to start therapies in he home (shout out to agencies that have OT and speech, got PT), purchase a new wheelchair and walker, so nothing holds this boy down. I will update this site, starting with the day after surgery; I am hoping. We are going down as a family and hope to afford payday weekend visits from those we leave behind. We request prayers for the entire family, as my 6 and 8 year olds have a great dad for this time, they have no mom. And my 19 & 21 year old girls, well, life is hard enough at those ages and they too will be without a mom. And Johnathan is in great hands, so I know all will be well, but I still fear the unknown and complications (only one surgery did we have a collapsed lung from sedation, but, every surgery has its risks...a dear lady we know just went to the Lord after an outpatient ENT surgery, so fear heightened more than normal)
Monday, October 18th, 1st and only on schedule...pray hard please. God Bless you all.
Oct 17, 2010
Leaving tomorrow for the big day. Needed labs before hand and got lucky enough to be able to get them done here in Kansas City. If no antibodies were found, then we did not have to go early to get blood draw in St Louis to do intense mapping before surgery. We will now get to do a stat map and cross the morning of surgery and results take about an hour they say. I guess all this is in case we need a transfusion.
I was also amazed to hear we were perscribed Hibiclens to bathe with 2 days prior to surgery. They also recomend bathing night before surgery and morning of. And we also got perscribed Bactrin ointment to be placed in both nostrils and around his feeding tube twice a day for 2 days prior to surgery.
We have had 11 surgeries and no docs have ever taken such percautions. I realize this is a spine surgery, but placement of the baclofen tubing was a spine surgery too. I will rememebr this for future surgeries and request it be a must, for I think any extra percautions in todays day and age is necessary.
I have doen well up until today, now reality has hit and the tears are flowing; leaving half the family behind, fear of the surgery and its unknowns, wondering how I will keep Johanthan happy lying down for a week, when he can't even sit for half a day at home. So many factors when a family is seperated and their daily norms change. Either way, I know God is with us all and that this is all necessary to be sure Johanthan is getting the care he needs and deserves, along with the fact that I will get all the training I need to strat Johanthan in his new journey.
Ronald McDonald house just opened last week, so housing costs dropped tremendously for family visits. Teh social worker at the hospital has gone above and beyond to help ease my mind with all questions and concerns.
Ranken-Jordan rehab is expecting us on the 25th. As long as nothign major goes wrong to detain us more thn 1-2 days, we will get that bed. If somethign arrises and keeps us longer, then we will have to await another opening, as they only have 22 beds so that they are sure to be able to accomodate every need for those in their care.
If all stays on track, we should return home by December 6th. And since Johnathan turns 12 on the 12th, that sounds like a great date.
Thank you all for your prayers and thoughts and help.
GOD BLESS YOU ALL.
Oct 18, 2010
They took Johnathan for sedation at 7:15, surgery started about 9...they are expect 8 hours...talk of central lines and transfusions made the reality hit me like a truck...and he may come out of surgery still on a ventilator if his lungs seem any bit weak....no way to stop these tears and fears......just got 1st update (every 2 hours they say) that all well and on track...God, hold him.
About 3 we got the call that they were closing, so another hour. Then we assumed that it would be another 1 1/2 hours in recovery, so I took my other sick child to the ER on the other side of the hospital. While entering a room I get a text that he is going straight to PICU, no recovery room, and that he is still in a ventilator, his blood pressure dropbut sit here quiet so he stays more stable, more asleepped and isn't truly stable, and his pic line stats are also low. Torn, I know I must stay inER to finish with my other son; so not fair to tear a parent like that. Not able to take it any longer, chest x-ray done, strep negative, waiting docs final say, I go to call PICU and check on Johnathan. Luckily, Johnathan doc answers and starts to fill me in when the ER doc returns to give me results. Hung up with PICU doc, learned Zane has walking pneumonia, floored but must go on, speeding to PICU waiting room caus enow little brothers can't come see big brother(wasn't gonna let them anyway with vent in, but not the excuse I was wanting. Then, when all is situated with other kids, Dad stops me to prepare me; now you know that is bad. Wel,, you see the pic; nothing can prepare you for that. Blood pressure stable, yet still in red. Pic line stat hanging around 1-2, needs to be 4-6. X-rays when he got into room and then here again 2 hours later; not sure why all that moving around necessary. Sedated enough to stay still, but yet still able to cough junk up. Last coughing spell he opened his eyes and tears came...this sucks, yet nothing I can do; he needs quiet and mom in the corner so he doesn't try to move or stay awake. Let's just pray that whatever caused the adema, goes away quickly and the swollen tongue comes back to normal size, for that is step one in getting out this ventilator. PRAYERS PLEASE. Thank you.
Mark Schultz - He's My Son
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can You hear me?
Can You see him?
Please don't leave him
He's my son
Oct 19, 2010
Overall, we had a good night. However, we can not get a good combination between pain meds and Johnathan's blood pressure. Everything we have tried has caused his blood pressure to drop....fentanol, dopamine, morphine, dopamine, upped the epidura meds, dopamine...still nothing stabilizes his pain without dropping that blood pressure.
Just awaiting doctor Anderson to hear that everything will stay the same until we can get Johanthan stabilized.
Prayers please, our young man is still on the ventilator and either in pain or with a somewhat stable blood pressure...Lord, I need both no pain and stable bloodpressure and strong enough to get off the ventilator....sorry to be so demanding, but he is my son.
Oct 19, 2010
Doctor Anderson came in and showed us that we got Johnathan's 97 degree curve to a 29-38 degree curve, which is amazing; better than we thought. PRAISE THE LORD! However, Johnathan has now spiked a fever and his pain vs. his blood pressure is still unstable, they are attempting, yet again, to up the epiduro meds now and then some tylenol and we can only pray this works. I have to sit here quietly in the corner, as when I talk his heart rate goes up, when I even just hold his hands I keep him awake and the respirations too high. I want to be at his side and let him know I am there, but today, I guess I can only do it from afar. I know this from when Mikey was in his coma, but it doesn't mean it makes any of it any easier.
Thank you all for your kind words and prayers. We do have praise for the Lord, but also have great needs still to be answered. "Ask and act as if you have already recieved it," hard words to swallow at this time. Yet I am in a Christian hospital with a chaplain on speed dial if I need to talk to escape reality, or if I need to pray for strenght and healing for us both. I thank the Lord greatly for that ability.
First 24 hours over at 7pm tonight...I must say, stable, yet rocky with minute to minute changes occuring....mentally, heart breaking, very tearful, yet deep down peacefully knowing God has his hand.
Oct 20, 2010
We finally got his bp and pain meds stabilized, but it only lasted a few hours. He had to have another pint of blood last night and his calcium levels are also very low. They added yet another new med to take the fluids to his from his body to his blood, as he is still really swollen,. Again they state that all of this is normal with this kind of a surgery and the fact that it was so big. I just hate the rollercoaster ride between stable and not and addign a fever, yet again, they say is normal. 12 surgeries now, and nothign about this surgery is normal to anything I have learned in the other 11. Johnathan also tried to puke out his tubing last night, which was very hard to watch, yet trying to calm him and stop him at the same time, all without trying to move him. I had to ask for sedation meds, for I knew he would not stop any other way. Also in their movinf of the tubing to prevent break down of the skin, they placed it in the center this time, and I believe that is how he is getting his tongue under the tubing and allowing him the ability to close his lips enough to gag it out. I willr equest it never go to the middle again, so we can keep that tongue to the side. I have also requested that we try to keep him sedated anough to not do that again, but yet know the unstable is from the line between pain and sedation. God be with us.
Doc just left...said everything on track, yet this will be another day of trying to stabilize between pain, sedation and bp. THAT REALLY STINKS!!! Yet I know we can't advance without stabilization. He said tomorrow he will change the dressing and probably take the epiduro out. If Johnathan's bp doesn't stabilize then, he may have to turn down his baclofen pump. Which, his nurse had told me earlier that sometimes after you change the catheter, they seemt o work better and dosing can be decresed.
Another day down and truly we are well, on track, yet unstable. Thank you all for the prayers.
Oct 20, 2010
Today, I just noticed that tha marks by his eyes are actually where the tape they used to cover his eyes in surgery has ripped the skin off when removed. I thought it was tape remnants left behind we could wash off.
As we sit thru yet another questionable day, I remember an earlier time that our family sat in a very similar situation with our older son. All the tubes, all the machines, can't talk to him, can't even hold his hand without waking him and causing him pain by his wanting to move, then making nurses upset cause heart rate up and blood pressure dropped. No parent should have to be here once, let alone twice. But I must say, what is harder, being the parent here, seeing and knowing, or being the parent at home wondering, hoping, praying?????? My mind and heart can't leave here, and I know even though Dad is at home now, his mind and heart are also here.
Beyond that reality....it is bath day...not sure I agree with any touching, especially when it can't be me, but I also want no germs being given even a minute around our little man.
God Speed.
Oct 20, 2010
Finally got bp and pain meds stable. However, we have now spiked another fever and had to take a culture straight out of lung, whichi is removing end of ventilator, using a hand one around respiratory grabbing their sample. Not something I watched, btu sadly heard more than I cared to. Labs were also drawn. Labs will be back by 2P, cultures take 24 hours, sadly.
Welcome to my ride.
Oct 20, 2010
Labs are back and with great news.....levels are up and white count is down. So even though overnight culture of sputum is yellow and being awaited upon, labs show all may be nothing. THANK YOU JESUS!
Oct 21, 2010
Johnathans bp is dropping into danger zones, so nurses are adjusting the dopamine as necessary. His fever is still an issue so antibiotics have been started. Tylenol is all we really can use for pain right now with the BP dropping down , lowest I saw was 78/34. However, nurse walks in room it goes up 10, she talks it goes up even more, so unsure why the drop...is his blood pressure on the lower side normally???? No one has ever monitored this, so feel we must after here. Pray we do not have any infection, but fear it may be so. Ventillator, is suppose to come out today along with epiduro...now I am not sure what is going to happen.
Oct 21, 2010
BP still in danger zone, but stays in ok place if arroused, or a nurse just walks intot he room. Versed is still off and has been since 2 am. Dopamine is at 9 now, so that down from the 11 at 3:30am when I went back to sleep thinking all was well. Apparently he stayed stable for a while, then everything happened all over again. They are thinking that maybe the epiduro and/or baclofen pump may be the culprets, for he is still not fussing or aggited, even after x-rays and removal of the epiduro. They just removed the epiduro and say it will take 2 hours for everything to leave his system.
The ventillator has been turned to support only, so since he passed the trial run, we are going for the long trial run. If we pass this, then the vent will also be removed today. The dressing will be changed no matter what, so will finally egt to look at that.
Fever is under 100. now, so not considered a fever, yet still being considered a factor.
Gotta love the medical guessing game....any of you watch House..sadly, I live it, yet love that show. And, a shout out to Tabi, a dear friend of mine, who's young son has just bene diagnosed with leukemia. She has been thru so much already Lord. Teach her, awake her again to you, then heal her son. Thank you Lord. God Speed.
Oct 21, 2010
Minute to minute up to even this am, unsure what to do to stabilize him...and look at him now.....incision looks great, drain tube removed (whole procedure took minutes and went smooth)...vent removal wasn't as bad as I thought from my end, but I know Johnathan will disagree. He is still coughing up stuff, but doing great. Thought we heard a rattle in chest, but am x-ray showed nothing and fact that we needed to cut out sedation meds for bp, made removal a must once we saw his blood gases were staying up with the vent turned to 0. Within an hour we went from tubes every where and fragile to half the tubes, even foley out. AND AMAZINGLY, all was done with no pain meds and no sedation meds; he only had tylenol for his fever a bit before.
We are right now sleeping for 1st time since and our bp is dropping again, even though we are still on dopamine at 9. We still have a fever going from 99.9 to 102.2...we have no idea why either is occuring, so he will continue to be closely monitored.
BUT LOOK HOW STRAIGHT HE IS SITTING IN THAT BED! No pillows every inch to attempt to keep him straight. You can still see the twist, but we knew nothing could be done for that. However, it is considerably less just from the fusion. I am so excited and thinkin Johnathan is going to make it to Saturdays halloween party and our scheduled Oct 25th transfer date to Ranken-Jordan.
GOD IS GREAT!
Oct 21, 2010
Ready for bed...dopamine down to 6. No pain meds all day, just tylenol for fever. Fever down to 99.8, and we're sweating. Croupy sound since vent pulled down to sporadic frog. Calcium still low, so getting more. Just started a feed thru his feeding tube that will go 4 ounces over 8 hours for now. BP seems to be hitting high marks today, instead of lows; that is why the turn down. Once left alone in a quiet sleepy state, today they have dropped to upper 90's only...we will pray the night stays the same. God Bless
Oct 22, 2010
Dopamine turned down to 3 then off. Saw he was stiff and in pain when I got up so requested pain med. Tried small dose of morphine and saw it was waaaay too much and not a good match for, so requested something different. We tried tylenol with codeine and I feel we have a match. Lengthly tube feeds have been incresead and he can drink by mouth today. However when I brushed his teeth for the 1st time all week, he refused to let me in, then refused to let me out, and totally refused to drink for the rinse and spit. I used those toothettes and forced my way in and had to wait for him to release to get it out. I guess attitude is all he has and I am glad to see it back. Gave him a sponge bath, enema and changed his bedding. I really stink at this rolling side to side on diapers and bedding, but I am trying. I know I have to relearn how to care for my son, but doing it while he is in pain stinks. Overall our heart rate is 108 our last blood pressure was great. Our labs are clear. Our fever is under 100 and our art line on the wrist even got removed. Nurse and I agree that if all stays on track, we should be out of ICU by tomorrow or Sunday at the latest. Still awaiting doc for today and the people that are coming to make our brace, but very hopeful that we are still going to make our 25th date for Ranken-Jordan...THANK YOU JESUS....no pics today, for we are yet to get a smile on a regular basis. Thank you all for your prayers and wishes.
Oct 22, 2010
Trying to get him swallowing again, so thought we would start with a sucker...he did great but now is gaggy...not ready to drink today, so we'll up tube feeds and try again tomorrow. But can you believe today vs. 2 days ago...GOD IS TRULY AMAZING...thank you Lord.
Oct 22, 2010
They came and fitted Johanthan for his brace...never thought I would see them after 3P on a Friday. Beyond that, new technology gives them the chance to fit one for a brace without casting, but just detailed measurements. Thought we was getting lucky, but then they noticed ha still had a slight twist, so we had to fivberglass cast anyway. Johnathan was very mad at mom after, for lying on his belly was hard. The brace will be back tomorrow, so we should be able to get out of bed. Awesome news.
PAIN MANAGEMENT....need I say more. Saw that 6 hour med was giving him 5 hours to pain,s otrruly needing something every 4 hours. But doing what you must. Up at 3:30 in pain, message to give pain meds around clock didn't get delivered, or heard, so instantly gave med. 2 hours later still awake and in pain, so gave tylenol. 45 minute wait that took for ever; nothing changed, so told call doc. Gave him codiene and he was still up, so mom scooted him over and climbed into bed with him to be sure he was relaxed and resting. So today we are still on oxycodone, but at a higher dose. He is starting full feeds. We are going to start 10 ml of oral baclofen every 8 hours. Central line coming out, regular IV being placed, leeds just came off. Now we are awaitng our brace and we will be leaving ICU and headingto the main floor. I am petrified about the pain when we get him in his brace and sitting up, but we have tordol as a stand by and valium, but would only use valium at night.
Great part of the day, beyond doing well enough to leave ICU, Fred Bird came to visit and I heard Johanthan's belly laugh.
Oct 23, 2010
We got our brace. It look smaller than our other one, but they say we need less support. Wore it half an hour without issue.
Next step is the removal of the central line and transfer to the floor. Ranken-Jordan here we come; know we'll make our Monday transfer date now.
Oct 24, 2010
Up yet again at 3:30 in the morning...in pain too...last night was worse, as main pain med didn't help so had to call doc to egt something else, tonight, we had tordol IV instantly and then valium to see if between the 2 we can't get back to sleep , or if this will again be morning. Dr Anderson started Johanthan on oral baclofen also yesterday, so maybe that and the incresed dose of oxy is why this time tordol touched his pain?????? This whole pain management is such a guessing game I can't keep straight what med truly does what. Tomorrow I will requets to go back to the 9 mg melatonin and 6 mg valium at bedtime with the oxy and tordaol switched off every 3 scheduled. He also got his supper feed a hair afterr 7 tonight, so maybe that plays a role. They are wanting 5 cans of formula a da, but I said no way to a 9P feed and never again to a 7p feed if John is expected to be able to sleep. I think it is too much too soon on trying to up his intake from what he is even use to at home. At least at this hospital, addressing your needs and wants doesn't take hours and they too do not want to see your child in pain...seems to be more than a job for every nurse and doc we have met here, even the brace guys that came late Friday afternoon and returned Saturday morning. AMAZING TEAMWORK!!! AMAZING CARE!!!
Oct 24, 2010
Finally up and out of bed for the 1st time all week. He was a bit nervous of his new brace and what getting up really meant, but did it without issue of anything but a bit of drooling, I survived an hour trip around the hospital. A few minor adjustments needed for the brace; and they are coming in the morning even. We will get up one more time tonight so we can get started on working on all day up. We will finally egt to eat tonight and mom is thinking cream of wheat will do the trick; feeds finally allowed as we did at home. Increase in valium & melatonin back to the dose we took at home. Thought we would egt to decrease, or even stop it, but not today. Seems we have reached our max days of tordol, so trying to get a reorder or a new med in it's place. Face is healing wonderfully. Bowels are back on track. Can not believe we were still on a vent just a few days back. GOD IS GREAT!!! If Ranken- Jordan still has our bed, we are out of here tomorrow and update swill start on the rehab side of things. AMAZING!
Oct 24, 2010
VERY, VERY, UPSET RIGHT NOW.....todays nurse made me feel that I was back at Children's Mercy. It seemed that everythign we needed had to be hunted down. I constantly felt the need to remind her what was due next. Then in my excitement of Johnathan getting up for the 1st time, I didn't pay attention to the pain schedule. I got Johnathan up for his second time of the day and his first real meal. The nurse brought in zantac; I stated nexium goes with supper but whatever, I'll take it. After feeding him, he chucked up a couple times so I hollered for the nexium ASAP. Knowing we were then heading down to cafeteria to get my supper, so we can get our hour in in the brace, the nurse quickly gave me the nexium and disappeared again. We went on our way, returning a bit earlirer than I planned cause I saw John stiffening. Changed his pants and saw a blood spot in the bottom of his bandage, so pressed the call button. Then, while waiting for the nurse, I saw John stiffening even more so pressed call button again. Then, Johnathan starts crying so I press call button again and sternly state for a nurse to get here with pain meds now. An hour and a half after the first call, 2 nurses finally show up. Then I have to sadly await the 20-40 minutes for the meds to kick in, all while Johnathan is crying. I stated all my anger into the new nurse, reminding her of our schedule and the fact that my alarm is now set for it. And boldly stating that if that nurse is on for tomorrow, you can now get her scheduled elsewhere, for she is NEVER allowed in our room again. She knew she would be off soon and needign to do the one hour report. It is her job to check and make sure her patients have everythign they need before hand. IT IS NOT MY JOB TO REMEMBER EVERYTHING. I would have stayed in Kansas City had I felt I could mentally ahndle that and everythign else. COMPLETELY UNACCEPTABLE! I will have no problem reporting my issue to social services and Dr Anderson tomorrow.
Gladly, Johnathan is now resting.
Oct 25, 2010
We are out of here today.
Orthotic & Prosthetic lab stopped by first thing this am, saw changes needed and returned before 3P departure....AMAZING!!!
Off to Ranken-Jordan Rehab Hospital.
