Interesting Palliative Care Doctor Posts

I cannot believe a pain management doctor would continue to treat a child on so many opiates via phone. Joshua was  treated for 6 months  after Dr. T before ever meeting a new doctor team.

  • Written June 28, 2013 1:41am by Kate Parker

Bethany has to go to Portland to see her rheumatologist & cardiologist and Joshua gets to go along because his palliative care doctor wants to meet him. Yes, the doctor who has been doing such an amazing job calling all of the shots with regards to medications & treatments to help Joshua live to the best of his ability for the past 6 months has never met my child. She took over from Dr. T when he left Legacy Emanuel. I have met her and visited with her a half-dozen times when Dr. T introduced her to me while Bethany was in the hospital for her heart surgery & follow-up appointments last year, but Dr. G has never met Joshua. She really WANTS to, though, and preferably before a funeral, sooooooo, because I have to take Bethany up to Portland, I will take Joshua, too. Dr. G said that giving Lorazepam might help Joshua to travel better. I anticipate having to drive for a bit, then stop so he can lay flat for awhile before we drive some more. I am nervous about how he will do away from home for a few days and would be grateful for prayer that he handles it all right.  We will be traveling on July 7th.

Today has been pretty good.  With the help of lorazepam, Joshua has been relaxed & happy for most of the day.  He is needing more breakthough fentanyl and says that if he


I cannot believe she tracked this doctor down via a personal page.

  • Written March 19, 2013 10:38am by Kate Parker

I sent an email to Dr. S last night, asking if she would please contact Melissa (Dr. T’s replacement palliative care doctor at Emanuel) to ask about changing Joshua’s methadone dose. I emailed Dr. T last week (via his photography website, which I know is SO professional, but it was the only way I knew to get in touch with him), asking if he was going to provide Dr. S & me with his contact information so we can keep in touch regarding Joshua’s care. You know, since he assured me repeatedly via email & in phone calls & in person when I saw him (during our discussions about Bethany) that he would always remain available to Dr. S & me for Joshua’s care even though he was changing jobs and going to a different hospital? His response was that for now, he thinks it would be better if we contact Melissa & Kathleen since his new job doesn’t allow him the independence that he had at Emanuel and blah, blah, blah (other excuses/justifications ~ it is probably completely legit, but the feeling it left me with was the same… that of being abandoned by the doctor who was the head of my son’s medical team). So… please pray that not only can Dr. S contact Melissa, but that Melissa (who has never met Joshua) will make very wise choices for my little boy’s care.



The Weeks Leading Up to the End of CaringBridge

I have always wondered about the way the events took place. I found it questionable that Dr. G signed off the case, and then came back on the case a week later. Then he was hospitalized got better and then the rest of the stuff took place. September 8, 2013 was the last post.

  • Written August 17, 2013 7:12pm by Kate Parker

Long phone conversation with Dr. S today. More changes are coming. Dr. G signed off Joshua’s case. Yes, after assuring me repeatedly that she would be with us for the duration of Joshua’s life & that she would not break her word like Dr. T did (when he left Legacy but promised he would remain available to Dr. S for consultation), she’s now uncomfortable with managing him at the doses of meds he is on, so she’s done. I do understand her perspective & I respect that she knows her limits, but losing her is not something I’m thrilled about.

  • Written August 23, 2013 1:50am by Kate Parker

Today was filled with many unexpected things.  I had a call from Dr. G, who is coming back to Joshua’s medical team in a slightly different role than before, We had a good conversation.  She explained what had happened to cause her to pull back last week and I felt better for having an understanding of what had changed.  When I first heard her voice on the phone this morning, I thought maybe I had misunderstood what she said during her, Dr. S & my phone conference 8 days ago, but she assured me I had understood the situation correctly.  It’s just that the issue that caused her concern has been resolved, so now everything is fine, and she doesn’t want to leave us (Dr. S & me) hanging, especially since she promised she would be with us to the end. I apologize for not sharing the details, but suffice to say we again have Dr. G as a resource for helping Joshua, which makes me happy because she has done a wonderful job of managing his needs for the past 8 months and I never wanted to lose her in the first place.

  • Written August 26, 2013 12:03am by Kate Parker

Seroquel (the anti-psychotic mood stabilizer) is not working worth a dang for Joshua today. I am ready to pull out my hair. Imagine the most unpleasant nagging toddler who is utterly unreasonable and add a bunch of defiance and demands and insults and a refusal to ever be quiet, then multiply that by about 50, and that is what we are living with. I’m told it’s a combination of agitation, anxiety & the side effects of medications. I’m told it is really common (almost to be expected) at the end of life. I’m telling you that it is awful and exhausting and enough to make *everyone* in this family who is listening to him and trying to deal with this all of Joshua’s waking hours (8 so far today) pray that God would take him to heaven soon because you know, it’s going to suck when he’s gone, so we’d rather it didn’t suck before he leaves, too.

Edited to add:  Yes, I know it’s not his fault & it’s fully out of his control.  I know that.  And we do our best to not react and to stay calm and not let it get to us, but after being hit & kicked & shoved away & pinched & having our hair pulled & being verbally attacked by a child for whom discipline does *nothing* except incite fury for another couple of hours over the perceived offense (because in his mind, he has done nothing worthy of being disciplined for), all I want to do is get into my truck and drive far, far away.  I have kids who want to jump into the vehicle and come with me.  And it has nothing to do with love.  We love this child tremendously.  We are just worn out and hurting over this.  I will be calling Dr. G in the morning & am hopeful that she can help to get Joshua back under control with something simple like a dosage adjustment.

  • Written August 26, 2013 2:09pm by Kate Parker

No matter how caring Joshua’s doctors are (and they ARE caring… and compassionate… and doing everything in their power to help me to take care of my little boy), the conversations with them are all pretty difficult nowadays.  I’ve had numerous conversations thus far today as information is discussed & relayed & decisions are made.  Some of the information has blindsided me. I hate it when that happens.

My emotions are raw right now and since it’s only noon and I still need to function for many more hours today, I’m not going to write everything that’s on my mind.  I don’t want to leave people worrying about Joshua or my family, though, so this is a quick “jot” to let you know the basics of what is going on as a result of my telling the doctors about what happened over the weekend.

Dr. G and Dr. W (palliative care docs) are in agreement that Joshua needs some big changes. First changes will be switching him from IV fentanyl to IV dilaudid, which Dr. S is getting all set up today in the hopes we can have the new medication by tomorrow (it has to come from Portland) and getting Joshua admitted to hospice quickly versus the slower pace we were going at (Dr. S was trying to work out having the new hospice nurses meet with the current nurses so there could be a peaceful hand-off and training session for the new nurses to learn “all things Joshua”). After the correct dosage is figured out and he’s stable on that, the docs will begin tweaking his behavior meds. He’ll have more added & some changed. Apparently, all of this was to be expected because this is what happens when brain cells die off at the end of life. I was told he’ll be on ICU-level interventions of psychotropic & pain medications and if that isn’t enough to keep him calm, they’ll add in heavy-duty sedatives and just keep him knocked out until he dies.

Just writing that brings tears.  I am so sad and angry and frustrated and despondent and so many other emotions all coiled together inside me.  I’m going to go work out on the elliptical so I don’t blow up or fall to pieces.  I will try to update later tonight.

  • Written 22 hours ago by Kate Parker

More phone calls with doctors and a nurse visit (last one from this nurse) and I am emotionally wrung out for the day.

Things I’ve learned today:  switching Joshua to IV dilaudid will take a couple days to set up.  No one knows what dose he’ll need, so instead of starting with a basal dose that would be a guesstimate of what he’d need, I’ll spend 24 hours pushing the button on his pump to give him a generous dose of dilaudid up to every 10 minutes, as needed, to control his pain, and at the end of 24 hours, the doctor will add up how much medication Joshua required and divide the total by 24 to obtain the basal dose for the dilaudid.  If you think that sounds potentially quite miserable for my little boy, join the club.  I know I’m totally looking forward to pulling an all-nighter with a child who may not sleep well because his pain isn’t well-controlled (yeah, I’m being very facetious; actually, I’d like to invite the doctor who thinks this is a good idea to come spend the day and night at my home so she can partake in this funfest).

He’ll be admitted to hospice tomorrow morning at 8:30am.  I don’t know yet when someone will show up at our house, but I am assuming (dangerous practice, I know) it will be tomorrow since I was told the doctors are meeting at 8:30am to admit him.  No one from hospice has called me yet, so I’m not exactly sure what’s going to happen.  All I know is it’s going to happen soon.

A few days after dilaudid is set up, there are plans to change more medications.  The new palliative care doctor felt comfortable changing multiple things simultaneously, but Dr. G overruled her by pointing out that if we change too many things at once, we won’t know what is working or what isn’t and we won’t know what to titrate up or down. Once again, I am thankful to still have Dr. G on our team to help me advocate for Joshua.  The new palliative care doctor also “felt strongly” about greatly increasing Joshua’s dosage of lorazepam “because that is the standard of care for a person who is having agitation” and I told Dr. S (she was the one who informed me of the new palliative care doc’s recommendations ~ I have not yet spoken with this doctor) that I strongly disagreed with that idea because we have already learned that a higher dose of lorazepam increases Joshua’s anxiety in a paradoxical reaction. It’d be great if this new doctor gets with the show & learns what we’ve tried and what has or has not worked with Joshua before she begins popping off with recommendations left & right.  There are more things she wants to change, but I will share each of them as they occur rather than list them out right now because some of them may not actually happen and I don’t want to list everything out and stir up questions that I don’t know the answers to yet.

It is very unnerving to be at the 11th hour and switching all of Joshua’s major medications over to new ones plus changing nurses & agencies & adding medical personnel who are not pediatric specialists and who don’t know Joshua at all. It is challenging for me to trust their decisions and to know that they are making wise choices for him.  I feel like I no longer can relax and know that whatever medication change is recommended, it’s an appropriate one that I can trust because I trust the doctor making the choice to start/change the dosage; instead, I feel like now I have to go back to being hypervigilant to ensure that no one screws up.  I am really hoping that everything is going to go a lot more smoothly than it could and that everyone works together to do what is best for my little boy.  If he can be kept calm & comfortable, I will deal with anything that is put before me.  Still, I wish it could be easier and that days like today wouldn’t have to happen.  The nurse said that what I am experiencing is mental & emotional anguish and I thought that was the best description I’ve heard because it really does fit.

Joshua has been doing okay today.  “Decent” was the adjective Dr. S used and that, too, is a good fit.  He is very tired and as long as we keep things low-key around him, he’s tolerating the day.  I anticipate bedtime being in the next hour or so, which is good because tomorrow could be a very busy day with lots of new people wanting to meet him, so it’d be great if both of us could be as rested as possible for that.

  • URGENT prayers needed for Joshua

Written Aug 27, 2013 5:31 PM by Kate Estes

This is Kate Parker’s friend, AKA “the other Kate.”  I just got off the phone with Kate and she asked me to update you guys on what is going on.  In a nutshell:

— The hospice director from the hospice that was supposed to admit Joshua today has said that he is “too complicated” for hospice and they won’t admit him.  Seriously.

— Their pediatrician is willing to manage Joshua’s continuing care BUT needs someone willing to make the suggestions and recommendation for her.  This isn’t a negative or unusual thing.  Pediatricians just don’t typically see many children with these types of overwhelming needs and they rely on palliative care doctors, pain specialists, hospice doctors, etc. to guide them.  With hospice bailing, Dr. S has no backup or guidance.

— Joshua is being admitted to the PICU in Portland tomorrow morning.  He’s being direct admitted by an AWESOME intensivist who was willing to step in today when pretty much no one else could or would.  The hope of all involved is to get Joshua’s meds optimized and write a very comprehensive plan for the pediatrician so that Joshua can come home under Dr. S’s care.

— While this sounds good on paper, the Parker family has been told that it is highly likely that Joshua will die in Portland.  This is horrific – for the family not to be there, for Kate to have to drive 4 hours home and leave him in a hospital morgue, etc.  I’m also the mom of a terminally ill little boy – trust me when I say this is the stuff that nightmares are made of.

— For Joshua to come home, the doctors will need to be willing to make a VERY detailed flow chart covering every possible symptom and contingency.  He also needs to be stable enough to survive the 4 hour drive home.

Obviously Kate doesn’t have time to write this update herself.  This family really, really needs your prayers.  They do NOT need your advice or suggestions.  I KNOW this situation is just insane, and I know it’s appalling that hospice would take this approach. Kate knows this too.  Our own hospice nurse was here when I got the call from Kate, and she was appalled.  Having said that, right now Kate’s time and emotional energy need to be treated with respect.  She’d love to hear that you are praying for her, but please don’t leave comments suggesting that they try this thing or that thing.  Their pediatrician literally told them that she’d gotten no sleep all weekend trying to think of different options and There. Are. None. right now.

I’m also going to make a plea here (Kate did NOT ask for this) for any sort of tangible support you can give this family right now.  They will be in a huge city and could use ANY restaurant gift cards – many restaurants do electronic gift cards and you can have these sent straight to Kate’s email.  She’s trying to work it out so Adam and Faith can come up with her – when you’ve got a child in PICU, it’s nearly impossible to get to the bathroom much less take a shower or eat if you don’t have someone else there to help.  Adam can be a go-fer and get food for Kate but I know that it would be a tremendous help to have some assistance in this area.  Even a Walmart or Target card can be very, very helpful.

Of course, please be holding them all in prayer.  The children being left at home are going to have to say good-bye to Joshua tomorrow knowing they may never see him alive.  Kate is having to drive over 4 hours with a hurting child who doesn’t usually even wake up for the day until mid-afternoon.  There will be nothing pleasant or easy about ANY of this.  Please pray your hearts out that this doctor will be moved with compassion and willing to do whatever it takes to get Joshua home to his family right away.

Thank you for your support of this precious family.  Kate is a dear, dear friend and I appreciate your love for them more than I can say.

“the other Kate”

August 30, 2013

  • Written 1 hour ago by Kate Parker
    Two weeks ago, I wrote that I’d been told that we were probably at the beginning of the end. Joshua was having many signs & symptoms that typically indicate that death is near and the palliative care doctor believed that he did not have much time left to live. On Tuesday, after being told that Joshua would have to go to Portland to be admitted to the PICU for medication management, Charley asked our pediatrician if Joshua was going to make it back home and she answered that she did not know… that she could not guarantee anything. Dr. G had said that if Joshua came to Portland, he would most likely die in the hospital. When Charley and I sat down with the whole team on Wednesday afternoon after admitting Joshua to the PICU, we were told about the significant risk for cardiac arrest or respiratory failure associated with the medication changeovers that were planned and we signed a new DNR accepting the risk that these medications could have a secondary effect of death. The chaplain informed us about self-transporting Joshua’s body back home in the event of his death. Everyone truly thought we were at the “this is it” point.
    Now the picture has changed.With the changeover in medications, Joshua’s agitation has lessened. What the doctors had thought to be terminal agitation ~ a sign of impending death ~ has now been revealed to be a side effect of the high doses of fentanyl Joshua was getting. Nothing else about him has significantly changed, but he is no longer believed to be imminently dying. Dr. G & her nurse said that once again, with *once again* being the key phrase here, Joshua has gotten close to the edge, looked over, then taken a u-turn and backed away.Does he still have a life-limiting chromosome abnormality? Yes.
    Does he still have severe chronic pain? Yes.
    Does he still face continuing decline in function as time goes on? Yes.
    Does the neurosurgeon still say she can not do anything more, surgically, to help Joshua? Yes.
    Does he still have gut dysfunction, bowel dysfunction & bladder dysfunction? Yes.
    Is he still eating and drinking very little (11 ounces of fluid yesterday… 6 ounces thus far today)? Yes.
    Is he still going to die a whole lot sooner than the average child his age? Yes.
    Could he still experience a sudden fatal event, with his brain stem herniating out of his skull or his breathing stopping or his heart stopping due to either his brain stem dysfunction or medication side effects? Yes.

    Does anyone have any actual idea when Joshua will die? No. And that, too, is the same as it’s always been.

    Joshua is a child with a rare condition and there’s no literature available to tell us what is going to happen next. His team of doctors is *excellent* and he has stymied them repeatedly throughout the years. He zigs when they expect him to zag. He has opposite reactions to what is anticipated will happen. The end result is this insane roller coaster that we are on. We can look at his symptoms and make guesstimates, but they aren’t always accurate. For example, Joshua eats & drinks very little. The average child could survive for a couple months on “bites & sips”. Does that mean Joshua could die in another month or two as a result of malnutrition? Yes. Can the doctors say with certainty it is going to happen? No. Despite eating & drinking very little, Joshua’s labs don’t look like a severely dehydrated child and he has managed to gain weight some weeks while losing weight other weeks. That is NOT what anyone would anticipate seeing, but that is what is happening with my son. Why? No one knows. They guess that his metabolism is whacked out now, but again, it’s just an attempt to make sense out of weird things that we all see taking place and no one really knows for sure.

    The palliative care doctor told me she takes full responsibility for giving misleading information ~ for saying that she thought Joshua had only a couple weeks left to live. I told her I was not upset with her and I’m not. We all work together to manage Joshua’s symptoms and when the body of evidence appears to point in one direction, the doctors draw conclusions. Sometimes, like this time, they are wrong. They’re doctors, not God; therefore, they’re not infallible despite their best efforts.

    So where does that leave us? Well… pretty much exactly the same, just breathing easier at knowing that the “this is it” time is not upon us. For whatever reason, it’s not Joshua’s time to go to heaven yet (no matter what he seems to think) and God is granting us more time with him here. As difficult as Joshua can be at times & as challenging as it is to live this life, I am not sad to have more days with my little boy.

    Please know I never wanted to stir up people’s emotions unnecessarily. That was *never* my intention. I hope people understand that sometimes a child is expected to die and for whatever reason, they veer away & improve enough to make everyone realize that nope, it’s not happening just yet. That’s what happened with Joshua & no one had any way of knowing that it was going to occur.

    I genuinely appreciate the help that has been given to my family. It IS enormously helpful to have assistance with meals up here & groceries back home. The money that has been raised/is being raised for Charley to be able to take time off work for 4 weeks after Joshua dies (the fundraiser “the other Kate” started a few weeks ago) will not be touched until the appointed time.

    Again, nothing has changed in Joshua’s overall picture, but the immediate situation is different than we thought and we are no longer concerned that Joshua will die imminently. It could still happen that he has a sudden fatal event, but barring that occurring, he will go home and we will continue on as before, doing our best to keep him comfortable and peaceful for the remainder of his life.

August 31, 2013

13 hours ago
Those of you praying for a happy Joshua ~ please keep praying because right now, the happy Joshua appears for awhile, then disappears again and is replaced by a very unpleasant version.

We’re not giving him scheduled Seroquel right now. I think it is because the doctors want to evaluate how much of Joshua’s agitation is caused by neurotoxicity from medication & how much is caused by condition progression (both cause brain cell death, which means the agitation can be caused by either or both). I’m at the point of wanting to cordially invite the doctors to sit in this room with Joshua for 24 hours so they can truly evaluate his level of agitation and over-the-top controlling bratty behavior. Really. Let THEM deal with him for a couple of hours. Even when he seems happy, it only lasts for as long as everything goes his way.

The medication changeover is going great. He is stable and that’s great. But he is not “happy”. Taking THIS Joshua home would not be something we could sustain. He is requiring constant intervention to keep him content and the happy moments are so weird and NOT Joshua ~ he does this baby voiced baby talk and is clingy and over-the-top lovey, which sounds sweet, but isn’t after awhile because it’s unnatural. He is often belligerent & rude & acts like a total jerk (to be quite blunt about it). There are occasional bursts of time where he’s content, chilled-out and more like himself, but they’re the exception rather than the rule. I don’t want to take him home like this. So if you’re praying, please pray that the nurses will recognize that this behavior is totally not normal for this kid and that the doctors will want to help manage this aspect of Joshua’s behavior versus being satisfied with simply controlling his pain. Yes, pain control is imperative, but we need to be able to live with him, too

  • Sep 1, 2013 9:11 PM
    After having a couple people at the hospital give me the impression yesterday morning that they believed Joshua’s behavior was caused by poor parenting, I was done. D.O.N.E. Ready to scream at the next medical person who looked my way. I did not stay for rounds with the doctors yesterday. I left & took an extended shower, fuming & venting to God about what was going on and pouring out to Him all of my frustration & anger about this entire situation. I told God that I know I’m supposed to be thrilled to have more time with Joshua, but right now, I am ANGRY because days with Joshua are AWFUL. Why would any parent want more days with their child behaving like a little monster? Joshua has been kicking, hitting, screaming, pinching, spitting, & hurling insults. He strongly resists any procedure ~ even something as simple as a blood pressure or temperature being taken under his arm ~ so what should take 2 minutes takes 45 to get accomplished. Giving meds involves wrestling him and almost pinning him down so the nurse can access his g-tube while he screams. No one has been helping me with Joshua; nah, they’re content to stay out of the room unless absolutely necessary and let me deal with him on my own (or with Adam & Faith’s help if they’re at the hospital). Then, to top it off, a couple hospital guys tell me how I’ve created this brat child by giving him what he wants, totally disregarding the fact that saying “yes” to a child’s POLITE requests (which is how Joshua used to ask for things) is not anything like catering to a brat’s demands (which we don’t do)! Oh yeah, I told God, this is just fan-damn-tastic! What I really want is weeks or months of this! NOT!!! I was not feeling thankful for more time with Joshua yesterday. Nope. I was furious and hurt and so tremendously frustrated. I had brought a child to Portland whose pain & behavior were well-controlled and now I was sitting in a room with the most out-of-control monster child I’ve ever seen & no one seemed to be interested in helping me with the problem THEY had created when they switched all of his medications! The thought of having to take this child home and expose my other children to their brother acting so horrible left me feeling hopeless & crying.
    After the anger & tears had mixed with the water from the shower & gone down the drain, I was left with the realization that it did not matter what the medical professionals said because I know Joshua better than they ever will & their opinion of the situation doesn’t change the reality I am living one iota. I know the truth. I know what kind of little boy he is and I know that my family doing what we can to make him happy has nothing to do with the brain deterioration causing personality changes. Doctors wouldn’t look at a patient with Alzheimer’s and blame the caregiver for the patient’s rude outbursts or horrible behavior… this is a similar situation, albeit with a 7 year old versus a 77 year old. With that thought in mind, I went back to Joshua’s room to face the war that would rage the remainder of the day with my child lashing out & hating the world & everyone in it. Fortunately, right about the time I feel I have nothing left in me to fight with is when God shows up.Our night nurse & the PICU intensivist on duty were angels in disguise. The doctor came in, sat down & asked me how things were going. Then, most importantly, she LISTENED and asked questions to gain a better understanding of what was happening with Joshua. She assured me that she was hearing my concerns and said she would make sure Dr. L (head of PICU) got fully informed in the morning that I wanted a plan to get Joshua’s behavioral issues back under control. Then she told me that children who have behavioral problems caused by bad parenting develop those problems over time, not have the behavioral problem appear suddenly. So that was very reassuring for me to hear.The night nurse was amazing. Simply outstanding. Right away, she recognized Joshua’s distress for what it was rather than jump to the “bratty 7 year old” conclusion. She observed his behavior for a couple of hours and when he escalated, she got him a dose of Seroquel (first nurse here to do that) and encouraged me to give him some extra dilaudid. It took 5 doses of pain meds plus the seroquel to get Joshua calm. Soon thereafter, he hugged me and said he wanted to go to sleep. After the day we’d had, I was relieved to kiss him (without getting smacked) and watch him drift off peacefully.

    Once he was asleep, Juli (the nurse) came in and we began talking. She was adamant that Joshua does NOT need to be suffering like this and that medicating him is entirely appropriate. I asked her what she had been through to give her that perspective because she had understanding in a way no one else I’ve encountered up here (this time) has. She quietly told me she had watched her mother die over the course of 7 years from a very rare form of cancer. Because of that understanding, she is now a strong advocate for appropriate pain management for her patients, especially those who are going to die from their conditions. Like the PICU doctor, Juli promised me she was going to fight for Joshua to get what he needs. I was so relieved that I hugged her as I thanked her profusely. She hugged me back just as tightly, telling me she understands and to know I’ve got her in my corner. It was exactly what I needed to hear.

    This morning, before rounds, Dr. G came in and sat down to talk for a bit. We went over changes that she wants to make and we discussed what the future might look like with regards to medications. She will be gone in 12 days, so her goal is to get Joshua set up with someone who is going to be helpful to Dr. S. I am deliberately trying to NOT think about the day Dr. G is gone because that thought makes me very sad. She’s been wonderful to Joshua & me. It’s going to be hard to see her go. Anyway, she & I kind of went over the plan for what we’d talk about in rounds and then the other doctors showed up & it was time to go out of Joshua’s room to join them.

    During rounds, I told the doctors that for the past 3 days, I had gone along with their plan of not giving Joshua any behavioral meds so they could determine whether his agitation was caused by neurotoxicity, but now I’m done and I believe it’s obvious that no, his behavior has nothing to do with the fentanyl he was on. Dr. L surprised me by admitting that he’s not good with behavioral issues in children (it was a surprise that he admitted it, not that he isn’t knowledgeable about the topic ~ I’d ascertained that already) but he agreed with my assessment and asked me who I thought we should contact to get Joshua the help he needs. He then included me in the other decisions made and asked if I was okay with each one. It was nice to be included in all of that versus standing there listening to the team make decisions for my child without my input.

    Today’s changes include:

    ~ Two of the three methadone doses will be reduced.
    ~ Ketamine staying the same.
    ~ Dilaudid basal rate staying the same. Increase frequency with which Joshua can get breakthrough doses.
    ~ EKG to check his QTC length (to gauge the severity of risk of a fatal arrhythmia)
    ~ psychiatrist evaluation ordered to help determine what behavior medication “cocktail” should be implemented. That won’t happen today (the eval), but they got the request in the system.
    ~ Seroquel to be given as needed and if the initial dose is not sufficient after 1 hour, he can have a second dose.

    When Joshua woke at a little before 4pm, he was immediately grouchy and uncooperative. After the nurse & I had to wrestle him to give 4pm meds, we unanimously agreed to give him seroquel to chill him out. When it kicked in, Joshua went from telling the nurse he didn’t like her and to get out and never come back to giving her a hug, politely asking for some strawberry ice cream & thanking her when she handed it to him. She brought the charge nurse in to validate the difference she was seeing, then wrote a long chart note documenting the drastic ‘before’ and ‘after’. I almost cheered. Vindication feels *good*!

    We are currently watching ‘Despicable Me’ and Joshua is perfectly content to let me sit on my pull-out bed 6 feet from him while he lays in his bed. He is being sweet and reasonable and everything is so much better than it has been for the past 3 days. I am so thankful for the PICU doctor & nurse that God sent my way last night and for the help they gave me to get Joshua what he needs. I feel like there is hope again and that’s worth everything when walking this road.


Sep 2, 2013 10:10 PM
The psychiatrist has come & gone. I am so glad Adam & Faith were up here when he showed up because after he left, I turned to them and asked, “What was THAT?” Seriously, the biggest waste of 10 minutes of my life. He came in, wrote some stuff on the dry erase board about the different parts of the brain that psychiatry deals with, tried to talk to Joshua as though he was a typical 7 year old (and got ignored for his efforts), wanted to know if Joshua would draw something for him (Joshua can’t draw anymore) or color for him (he can’t color, either). Asked me what gross motor skills Joshua has lost and I rattled off a list. Told me about a website that has training ideas for managing children with challenging behaviors ( and said that he’d make some recommendations for Seroquel that any doctor reading Joshua’s chart could follow. Um… I thought the whole purpose of the guy coming here was to brainstorm OTHER medications aside from Seroquel? Seriously, he walked out and I was like, “WTH?!?” I told the nurse that I wanted to see the chart note after the psychiatrist writes it to see what the doctor’s impression was of the brief visit because honestly, I can’t imagine what he got out of it.

The pain management specialist came by, as well. Long discussion ending with the plan to keep Joshua on ketamine & dilaudid & seroquel & gabapentin for now, plus he wants to do botox injections in a bunch of nerves all over Joshua’s head & neck (40 injections ~ don’t worry; Joshua will be sedated for the procedure) to give him some extra pain relief (temporarily). He said he’s happy to manage Joshua’s pain from a distance and will give recommendations to Dr. S for however long he is needed. That was definitely the highlight of the day and I am genuinely thankful for Dr. R stepping into Dr. G’s shoes. It makes me wonder if maybe we will be able to avoid dealing with hospice once we’re back home. That would be ideal ~ to be able to continue with our home health & home infusion nurses and not have to deal with changing over to the organization that has been so flaky with us.

Today’s PICU doctor wants to do a brain MRI to see what everything looks like inside Joshua’s head now, so he’ll have that soon. The pain management doc is hoping it’ll be tomorrow or Wednesday so that he can synchronize his schedule to come to the hospital & do the nerve injections at the same time Joshua is sedated for the MRI. I have requested that we also do a full spine MRI so that we can see what his back looks like now, as well. The PICU doctor agreed that was a reasonable request, but never did say for sure whether she would order it.

I know the question of “Why do all of this?” is probably in some people’s minds. I don’t actually know the answer to that, but I can speculate that, based on what I’m being told, the doctors want a whole new baseline for Joshua since he didn’t die when they thought he was going to, so now they’re all perplexed and I guess they think that if they get fresh data to start over with, they’ll somehow be able to come up with answers. Those of us who have been walking this road with Joshua for so long know that isn’t going to happen, but it seems every time new doctors join the party, they want to think they can figure him out and give us a solid prediction for what is going to happen & when. I figure that as long as it isn’t going to harm Joshua and we’re already up here, sure, they can go ahead and bring in all of their specialists and do all of their tests and get their new baselines. I’m happy to have the information, myself, since it gives me perspective on how things are progressing. But you know, it’s not like Charley & I would believe any doctor even if they DID think they had come up with a solid prognosis. I mean, they’ve told us several times that he doesn’t have long to live. We came up here a week ago believing ~ because of what they told us ~ that we would probably not come home with Joshua alive. So, really, how would we believe a prognosis/prediction now? Charley and I already decided we’ll smile and nod and say, “Oh, okay,” knowing in our hearts that only God knows the day & hour and obviously, for some reason, He does NOT want the doctors having a clue. And they really don’t. Seriously. We’ve got them saying that it could be days, weeks or months. Sound familiar? It’s a guessing game for them and I’m refusing to get embroiled in it. Whatever is going to happen is going to happen when it’s going to happen. The ONLY thing that EVERYONE up here agrees on is that Joshua will die from everything that is wrong with him and he will have chronic pain until that happens. Charley & I are pretty much like, “Uh… yeah… we already KNEW that.” I believe the flurry of new activity is simply because there are new doctors involved and they are trying to make sure everything has been tried (we already know it has ~ we did that almost 2 years ago) and that all of the data on Joshua is up-to-date.

In other news, the EKG done yesterday showed that instead of the seroquel & methadone elongating Joshua’s QT interval like those medications are expected to do (which was where the risk would have been for him having a fatal cardiac arrhythmia ~ that complication we were told there was a ‘significant likelihood’ of occurring), Joshua’s QT interval is shorter than before he was ever started on any meds. I asked Dr. G how that happened and she shook her head and told Adam, Faith & me (paraphrasing here), “I don’t know. I am done trying to guess what Joshua is going to do or why he’s doing it. I can’t predict anything with him. Every time I think I know something, he proves to me that I don’t know half of what I think I do. At this point, all I can say for sure is that I know my name.” So… one more example of Joshua’s body doing the exact opposite of what the average person does in a given situation. Dr. G said she really shouldn’t be shocked anymore because Joshua doing the unexpected is the one thing we can count on.

  • Sep 3, 2013 11:52 PM
    Today has been a long day with a lot of meetings and more changes. I’m not yet ready to talk about everything that is happening because just when I think I have an understanding of what I’m being told, the information changes and I’m left trying to wrap my mind around a new paradigm shift.
    What I can share is that I was told Joshua will be here for at least a couple more weeks as the team determines how much they can wean Joshua off the medications he’s been on. They wonder if the meds have contributed to some of his pain & behavior changes he’s been experiencing as of late. Joshua has been moved out of PICU & will have an MRI of his brain & full spine followed by botox injections in his head/neck tomorrow beginning at 1pm. Please pray for those procedures to go well. Also, please pray for clarity and wisdom for Joshua’s medical team & for God’s provision since my being gone from home for a month was not in our budget. Pray that we’ll somehow be able to get home sooner than the team is anticipating so that we are with our family in time for Adam, David & Sarah’s birthdays on the 15th of this month.




September 5, 2013

The MRI and botox injections were canceled. The doctor in charge today said there was no reason to risk sedating Joshua for a scan that wasn’t going to show us anything we could do anything with (ie: it was just to satisfy the PICU doc’s curiosity because Dr. W has made it clear while we’ve been here that she’s not doing anything surgically for Joshua again) and the pain management doctor said the botox probably offered limited benefit for Joshua, so we didn’t need to do it if he wasn’t going to already be sedated for the MRI. My reaction to the doctor & nurse case manager who came to tell me this information was, “Great! Can he eat & drink now, then?” And I handed Joshua a cup of water and a cookie when the doctor said he could have them. I was fine with not doing the procedures since it wasn’t me who had requested them and I had, in fact, asked if it was safe to sedate Joshua for an MRI when the idea had initially been brought up.

He is still having some intense bouts of out-of-control behavior and we have videotaped a couple of episodes to show to the psychiatrist if/when he comes around again. I’ve been told he is supposed to be coming in to determine what techniques and/or medication would help manage this new challenge we have with Joshua, but with the exception of the initial 10 minute visit a few days ago, we haven’t seen anyone from that department.

It is nice being out of PICU. The room is a bit bigger and there is a shower in the bathroom. It’s the little things that go a long way in the hospital! Joshua was able to go to the play room today for awhile and he really enjoyed being in there. We sat on the floor and played “war” with various cars, trucks & random toys that we used as barricades. It was a fun way to pass some time.

Sep 6, 2013 10:53 PM
This hospitalization has been challenging in many ways. I have not intended to write in a way that leaves people wondering what is going on, but if you think you’re confused by all of the changes going on as you read this journal entry, please try to put yourself in my shoes and imagine how it feels to be getting hit with constantly-changing thoughts and ideas and theories from multiple doctors,each who has varying knowledge of your child, and then maybe my reluctance to write in detail here will be more understandable. As every parent with a child who has a chronic condition learns, there are always people reading whatever is written with an eye for anything they can interpret as a discrepancy and with a heart that is judgmental & accusing. I try to write carefully and to do my best to be clear so as to avoid as many negative responses as possible. I aim to be honest & transparent so that no one can accuse me of falsehood or manipulation. Most people who read what I write recognize that. I realize there will always be those who don’t, however, and that is why I have not wanted to write detailed updates about each step we have taken during the past week that Joshua has been hospitalized. Information that I am given has changed from one doctor to the next. Plans have changed… procedures scheduled & then canceled at the last minute. I didn’t want this site to be full of “We’re doing this… oh wait, no we’re not,” and “Dr. X said this is happening… oh wait, Dr. Y contradicts Dr. X and now the prevailing thought is this.” It’s confusing to me and I am the parent sitting at my child’s bedside hearing every word that is spoken by these doctors. Trying to relay that information and then correct it each time someone changed their mind over the past week was too daunting and exhausting for me to do. That is why I’ve not given full disclosure. I had a comment in the guestbook yesterday that made me realize others who are reading here are having trouble understanding what is going on (I emailed that commenter to answer all of her questions and deleted her comment so no one would think I was ignoring her &/or wonder why I wasn’t answering the questions), so I will attempt to explain everything with the caveat that this is what the theory/thought/plans are as of *right now* and they may change in the days to come.

When we came to Portland 8 days ago, the doctors thought Joshua was close to death and needed to have his narcotics rotated to enable them to give smaller doses so that as he required more to be kept as comfortable as possible, they would have the ability to give more without causing adverse effects. This is a common practice. Long-term use of narcotics creates tolerance and a person needs more & more of the medication to get the same effect. When they are on too much narcotics for too long, they can develop a condition called neurotoxicity.

Neurotoxicity is defined in Wikipedia this way: “Neurotoxicity occurs when the exposure to natural or artificial toxic substances, which are called neurotoxins, alters the normal activity of the nervous system in such away as to cause damage to nervous tissue. This can eventually disrupt or even kill neurons, key cells that transmit and process signals in the brain and other parts of the nervous system. Neurotoxicity can result from exposure to substances used in chemotherapy, radiation treatment, and drug therapies (among other causes). Symptoms may appear immediately after exposure or be delayed.They may include limb weakness or numbness, loss of memory, vision, and/or intellect, uncontrollable obsessive and/or compulsive behaviors, delusions, headache, cognitive and behavioral problems and sexual dysfunction.”
When we arrived in Portland, Joshua was experiencing weakness in his legs, loss of memory & intellect (not complete, of course, but noticeable), uncontrollable obsessive behavior, headache, cognitive problems and behavioral problems. At first, the doctors believed the weakness in his legs was attributable to spina bifida and the other symptoms were clinical signs of condition progression. There was also concern that Joshua could be manifesting signs of neurotoxicity caused by either the fentanyl or methadone he was on. At the time of his admittance, Joshua was receiving 450mcg per hour of fentanyl and his bolus doses that he could get as often as every 10 minutes for pain were 350mcg each. As a comparison, the average dose given to a child would be 1-2mcg per hour. His daily methadone doses were 90mg, 90mg & 95mg compared to the average adult dose of 10mg. Simply put, Joshua’s doses were astronomical. The plan was to stop fentanyl & begin ketamine to reset his pain receptors and dilaudid at roughly half the amount of fentanyl he was getting and establish a new baseline at a lower level for where Joshua needs to be regarding medication.
The switchover went without complication. The PICU doctors and Dr. G had fully anticipated problems, but not one of those concerns occurred. Equally amazing was the fact that Joshua did not need extra medication despite the dilaudid dose being so much less than what he’d been getting (Dr. G had thought he would). Because of that, the PICU team wanted to continue weaning Joshua down to the lowest dose that would still give him adequate pain coverage. It made sense. If we got him down to a level of 1, he’d have more time to advance in dosage (as he grew more tolerant of the dilaudid) before he got back to a 10 and would need to get his pain receptors reset again. So with everyone in agreement, a plan was laid out to see “how low can we go” and still keep Joshua comfortable.
Amazingly, Joshua was weaned off ketamine without any problem. Then he came off dilaudid (yesterday was the day it was completely turned off). So far, he’s had just 2 headaches and only 1 required some ibuprofen to be managed adequately. Today began the wean off methadone. Well, to be technical about it, while Joshua was in PICU, they lowered his daily doses from 90/90/95mg to 60/60/75mg and yesterday he went to 60mg for each dose, but the official attempt to get him completely off this medication began today. Tomorrow, he’ll go to 45mg for each dose and the plan is to lower it by another 15mg per dose every 48 hours, so if everything goes perfectly, Joshua will be off methadone on September 15th. Dr. G doesn’t know if he’ll make it all the way off, but again, the plan is to get him to the lowest dose possible, so we’ll continue going down unless Joshua starts having increased pain that isn’t easily managed with over-the-counter meds. If he is successfully weaned off methadone, they’ll take him off lorazepam and then the only pain medication he would be on is gabapentin.
Everyone is stunned, amazed & incredulous that Joshua is coming off the amount of opiates he’s been on without problem. Dr. G never dreamed this could happen. Her nurse told me yesterday that anything I write on CaringBridge needed to be begin with the word “miracle”. Truly, no one knows why Joshua suddenly needs so much less pain medication now than before. I have been told repeatedly that it defies explanation, though one PICU doctor suggested that Joshua may not have needed the amount of medication he was getting in the first place. She suggested that he was in a negative feedback loop and that is what made everyone think his pain was increasing when, in actuality, it may not have been, and the end result would be neurotoxicity and the discovery that he can be kept pain-free at much lower doses of medication. A negative feedback loop would be where Joshua said his head hurt and received medication and the medication caused him to have a worse headache, which would then have triggered us to give him more medication, which would make the headache worse, ad nauseum. I’m not sure if I agree completely with that PICU doctor’s theory only because for a very long time, Joshua’s headaches were eliminated by medication, not made worse, but at this point, I’m confused enough to just toss up my hands and say, “Okay. Whatever the reason, he’s not needing as much pain medication and we all agree that’s a good thing. Let’s move on.”
It is fantastic that Joshua is off IV pain meds and his oral pain meds are being reduced, but as is so common in life, something good often has a less-happy flip side. For Joshua, the flip side is the lingering effects of neurotoxicity. Being on the amount of opiates (narcotics) that he has for as long as he has appears to have caused some damage. As he is coming off the medications, we are not seeing improvement in his behavior or cognition or obsessive/perseverating thoughts. We *are* seeing all of those plus lapses in memory, rages, opposition, intense tantrums over incredibly minor things, lack of reasoning, and other things that now have doctors (including the psychiatrist) leaning toward a diagnosis of autism for Joshua.
How can a 7.5 year old develop autism or autistic-like symptoms? Well, when you come from a family that has a genetic predisposition to autism (4 of my bio kids are on the spectrum), there is an increased sensitivity to neurotoxins. Opiates are a neurotoxin, so I am guessing it stands to reason that Joshua would be more likely to have autism “triggered” by long-term narcotic use than the average child. While he has not been given an official diagnosis, what I keep getting told is the doctors’ theory that the narcotics were “masking” Joshua’s autistic symptoms/behaviors and as they have reduced the amount of opiates in his system, his “true personality” is emerging and with it, the behaviors/symptoms we are witnessing. I don’t see that as a plausible theory since Joshua’s personality up until about 5 weeks ago was NOTHING like what it is now. I’m more inclined to think the reality is that Joshua was being overmedicated and that caused brain cell death (neurotoxicity) and that damage leaves us with a child who behaves in similar ways to an autistic child. Do I think “autism” is the correct diagnosis for Joshua? At this point, I’m not sure. I can see how many of his behaviors and mannerisms could be attributed to autism, but there are other things that don’t fit and are actually more like what I’ve read a child with brain damage might exhibit. I think that the MRI that was scheduled & then canceled at the last minute could have been extremely helpful by showing whether Joshua has brain damage. It also could have shown us whether he’s got better cerebrospinal fluid flow around his cerebellum as a result of his getting bigger in size & getting more space inside his head, which could be an explanation for how it is he’s still alive and why he isn’t experiencing the same level of pain that he was 1.5 years ago when he had his last surgeries. It is unfortunate that it was deemed not worth the risk of sedating Joshua to do the MRI because I believe that one test could have given us many answers and stopped a lot of the speculating; however,since the scan wasn’t done, speculation is all the doctors & I have.
So, that leads to the next question: what are they speculating? Aside from the possibility of an autism diagnosis, the doctors are greatly encouraged by how well Joshua has tolerated the weaning of his pain medications. They are hoping that the fact that he doesn’t need so much medication also means his risk of dying any time soon is greatly reduced. No one knows that for sure, but that is the hypothesis that they are going off of now. That is the paradigm shift I spoke of in an earlier journal entry. The doctors are now thinking that because Joshua isn’t needing so much pain medication, maybe the pressure against his brain stem has lessened and as a result, the threat of him dying soon is gone. Yes, they say, he still has his underlying “life limiting” condition and yes, they say, they don’t know with any certainty when he will die, BUT since he has been able to come off IV meds & is being weaned off of methadone, maybe that indicates that he’s got more space now inside his head due to getting older & bigger and maybe that means he will be here for many months, or even years, to come. Everyone is VERY excited about this development and wants me to be just as excited. While I am happy about how well Joshua is coming off the opiates, I think very few people up here understand why I have some reservations & that actually surprises me.
Yes, I AM very happy that Joshua has come off all IV medications and is getting lower doses of methadone with the hope to get him off that medication entirely. That is fantastic and exciting and all the other happy superlatives you can think of. Sincerely. I am genuinely happy with this development. But I am looking at (and listening to) the fallout that almost 2 years of high dose narcotics have wreaked on my little boy, who now has some significant behavioral & developmental issues. I am trying to wrap my mind around the realization that the doctors & I could have inadvertently caused harm to Joshua by treating him in a way that everyone believed was medically appropriate but in actuality might not have been. I am thinking about how my family and I will follow the doctors’ advice to “live as though Joshua will be here for years to come while knowing he could die at any time,” and what that will look like. I am remembering all of the things I’ve been told regarding Joshua’s prognosis and life expectancy and realizing that every prediction has been wrong, which leads me to wonder how I am supposed to have any measure of confidence in what is being said now. It’s not like any tests have been performed that enable the doctors to make their assertions with any degree of accuracy (to be fair, I don’t know if any such tests exist). And honestly, I think any medical professional up here should be able to understand that when I drove up here with Joshua 8 days ago, it was with the belief that he was very close to dying (since that’s what J’s doctor had told me), so telling me that he has been in a negative feedback loop and thus gotten overmedicated and what that means is that A) he doesn’t need as much medication and he isn’t in any danger of dying any time soon is going to be met with some skepticism. I don’t doubt he needs a lot less medication. I’m seeing that. I know it’s true. But I don’t understand how not needing as much pain medication equates with a longer life expectancy (especially if it’s true that he never actually needed as much medication as he was getting). I have asked specifically if he still has a chromosome abnormality and if Dr. W still thinks his brain stem is dysfunctional. The answer to both of those questions was an unequivocal yes. Dr. W, Joshua’s neurosurgeon, said she stands by her original opinion from November, 2011 and July, 2012, which is that Joshua has a problem with his brain stem and it would be too risky for her to try anything surgically (and her opinion is based on having SEEN Joshua’s brain stem multiple times over multiple years, so she watched the progression of its changes). So, knowing that, and knowing that the geneticist told me back on March 25, 2011 that the chromosome abnormality is a cracked foundation and that Joshua’s “house” (body) will eventually fail because of that cracked foundation, I am having difficulty blindly trusting the opinions of doctors whose specialties are not neurosurgery or genetics, especially when they’ve been wrong before.

I think everyone wants to believe that since Joshua doesn’t need nearly the amount of pain medication that he’s been on, it HAS to indicate that things in his head aren’t as bad as they used to be. That maybe because he’s bigger and older, it could mean fluid is flowing better now and it could mean that his life won’t be cut short for years to come. I like that theory. I do! I have never been in any rush to lose my little boy, so I will be happy to have him here with us for as long as possible. However, in the absence of any proof that the fluid flow is better, I do wonder if the theory being embraced by everyone is just as wrong as every other prediction & theory put forth in the past. Ultimately, I don’t think it matters much simply because I truly believe that everyone involved in Joshua’s care (myself included) has always done their best to make good, appropriate medical decisions for him. I do not believe anyone ever did anything to intentionally harm my child (and I know I never did!). So at the end of the day, whatever damage was done to Joshua’s brain by the long-term use of high-dose opiates is no one’s fault and his life on Earth will go on for however long God has ordained for him to live. My family & I will love him & care for him & enjoy him for all the days of his life and we will endeavor to follow the doctors’ advice to live as though Joshua will be here for a long time and not focus on the second half of that sentence (the “even though we know he could die at any time” part). I won’t pretend that it is easy to see the behavioral changes in Joshua or that it doesn’t hurt to listen to his verbal assaults & screaming rages every day, but I have experience parenting kids with autism spectrum disorders, so I am going to draw on that knowledge base to work with Joshua and help him move forward developmentally. I’ll get him re-started in speech, occupational and physical therapy, as well, and since he needs a bigger wheelchair, I will see about getting him a new manual chair that he can push himself in rather than the tilt-in-space chair he’s been using. I’ll buy a kindergarten curriculum and start working on re-teaching Joshua the basics that he previously knew but has lost over the past year. We’ll get back to the business of living… just as soon as we get out of the hospital.
I know this is a lot of information and I am assuming there will be some questions because I know how hard it has been for me to absorb all of the changes that have happened and I’m hearing everything firsthand. I will answer respectfully-asked questions, but please know that any rude or mean-spirited comments will be deleted before I see them because I have specifically asked my friends who moderate this site for me to keep an eye on the guestbook. Also, for anyone who may wonder what will happen to the money that was raised by “the other Kate” to be used for Charley to be able to take some time off work after Joshua dies, I want to make it clear that the money will be used exactly as it was intended. Until Joshua dies, it will stay in the account and it won’t be touched. I greatly appreciate those who donated to that fundraiser and do not want anyone to be concerned that their donation will be misappropriated because that is not going to happen.
As always, thank you to everyone for your support and prayers and kind thoughts and encouraging words. This road has been very rough, especially as of late, and it helps to know so many care about the challenges that Joshua & the rest of my family face

Sep 8, 2013 3:52 PM
I need to clarify a few things from my last entry.

1. Joshua is NOT off all medications. As of right now, he is still getting 4 times the average adult dose of methadone every day, plus gabapentin (pain med) and 4 other non-pain medications. He will go home on gabapentin & the other 4 meds for sure. He might also need some methadone if he can’t be successfully weaned completely off of it. We also anticipate adding at least one behavior medication before he is discharged. So no, he is not off all meds. He IS off all IV pain medications.

2. He is not “getting better”. Everything he was doing before he came to the hospital, he is still doing. He sleeps 13-14 hours before typically being woken before he’s ready to be up. He walks around a little bit. He plays on his iPad. He watches movies/tv. If we were at home, he’d also be playing on the computer, but there’s no option for that here. He eats & drinks small amounts because it causes belly pain. His voice is still hoarse. He is not doing anything significant now that he couldn’t do before we began weaning him off of narcotics. If I see him regaining skills that he’s lost over the past 1.5 years, THEN I will report that he’s showing improvement or “getting better”. Until that happens, however, I’m not saying that because the fact is, he isn’t getting better. He’s at a plateau right now, which is a place he’s been at many times before in his life. Time will tell if he’s going to inch upward or slide downhill some more and enough hasn’t passed to make a judgment call either way.

3. His behavior is VERY different than the Joshua of old. The behavior is similar to what we were seeing at home for 3 weeks BEFORE we came up here and BEFORE we began weaning him from IV medications. This behavior is most likely the result of being on high-dose opiates for so long. It is most likely permanent. It is not going away despite the fact that Joshua is on so much less opiate medication now. It is not withdrawals (it was present before we removed any medication AND it isn’t getting worse or better regardless of what we do with his meds). It is not the opiate medication, itself, causing the behavior (if that were the case, being off the meds would have eliminated the behavior).

Yesterday, the nurses brought in arm restraints to put on Joshua if he continues trying to hurt me or others. I have scratches on my neck and chest, bruises on my legs from being kicked and I listen to screaming, raging &/or verbal insults hurled at anyone in his proximity for hours each day. The nurses we had yesterday & today KNOW Joshua from all of his previous hospitalizations (they’re 2 of our favorites, but Joshua doesn’t even remember them) and they are shocked and sad at what has happened to him. One said that when Joshua is raging, he’s like an adult who has drank a fifth of tequila and is completely out of control… that he’s not “there” when he’s having a fit and he is completely unreachable. I agree with her assessment. They are documenting things in detail and will specifically tell the psychiatrist that redirection, distraction & collaborative problem solving do NOT work with this little boy and that he is unable to reason or be reasoned with. I am thankful that someone who KNOWS Joshua sees what I am seeing and is “going to bat” for him/me. I hope it will make a difference with the psych. We have videotaped a couple fits that have taken place with nurses in the room to show the psychiatrist, so that he can watch what we are talking about.

Even when Joshua is seemingly calm, it is ONLY because everything in his environment is EXACTLY the way he wants it to be. He doesn’t want anyone to talk. He wants to control what is on the television. He controls every miniscule detail that he can and as long as everything goes his way, he’s calm. The moment things aren’t the way he wants/needs them to be, he starts getting riled up and, depending on what is happening or if anyone is making demands of him (such as needing to do a blood pressure check), he will escalate very quickly to a full-fledged meltdown. Again, I want to reiterate that this is NOT merely “bratty 7 year old” behavior and it isn’t “Oh, he’s tired of being in the hospital,” behavior. He is out-of-control and violent. He tries to hurt others and laughs when he succeeds. This is NOT Joshua’s personality. It is a very drastic change from the personality he’s had his entire life and it’s a recent change that had nothing to do with our weaning him from narcotics. And I don’t want to offend anyone, but please don’t offer me behavioral advice right now. If I later decide I’m open to hearing suggestions from people who aren’t seeing Joshua firsthand, I will ask for help. Right now, however, I am simply trying to clarify things so that people will understand that things are NOT all rosy and wonderful now just because we are weaning Joshua off narcotics.

Because Joshua’s behavior is so ugly, my children at home are NOT eager to see their brother right now. They miss JOSHUA and this little boy they are seeing on Skype and/or listening to as he demands & yells in the background while I’m trying to talk to them on the phone is NOT the brother they miss. Seroquel was the behavior medication that we began using soon after Joshua first began displaying these horrible behaviors so the kids at home did not have to endure his verbal abuse & violence. Now that he’s not on any behavior meds, Adam, Faith & I are the ones seeing the full spectrum of how bad this behavior is (along with the nurses). I am praying that the doctors will help us get Joshua under control before they discharge him. I don’t want my children at home to be hurt by their brother, either physically or emotionally, and while redirection and distraction work for “minor” things, Joshua is rarely thwarted as he perseverates on something and that means an escalation of behavior when he can’t have things the way he wants. The nurses have said that Joshua’s behavior is typical of brain injured children. I am waiting to see if a doctor agrees with that assessment and, like I said, I am praying for help with problem-solving this situation.

4. Joshua does still have headaches. His pain is not all gone. At this time, I’d characterize his pain as similar to spring, 2011 ~ he has positional headaches, meaning that after he has been upright for awhile, his head hurts and we have to get him to lay down. If, after 30 minutes or so, his head pain is not significantly diminished, we give him ibuprofen. That is working right now and that is great and I am happy that he is comfortable for all but short periods of time throughout the day, but it doesn’t mean he’s pain-free because he’s not. It also doesn’t mean he won’t experience a progression of pain once again and eventually need more medication again at some point. We don’t know if that will happen, but it could.

It is great that Joshua will go home without narcotic pain meds, but managing his pain is only one piece of the puzzle and right now, the behavior component is much more significant and concerning. If we can get that hammered out and a workable solution in place, I will feel a lot more hopeful about the future.


Why won’t my blog take off?

Kate’s questions on a forum before Joshua was terminal.

Gonna sound snarky, but this is a serious question
« Thread Started on Oct 28, 2009, 9:58pm »

I know this will sound snarky, but I am not asking it in a snarky way. I’m being very serious.

Why are people more interested in a child when they are super-sick than when they are well?

Look at Stellan. People obviously care about him, but they come out of the woodwork in droves when he is in the hospital. MckMunch is very dramatic and provokes anxiety and worry in her readers by the way she writes, so maybe that’s part of what entices people to read, but it makes me wonder why, exactly, people care MORE when Stellan is sick than when he’s well?

The same phenomenon happened with Kayleigh Freeman. It is happening with Kate McCrae and Jonah Williams and many others. When the child’s doing better, comments for the day drop off, but when they’re having a crisis, comments go through the roof. Why is that?

And, since I’m being honest here, I’ll ask ya, why don’t I get that kind of reaction on my blog with Joshua’s issues? Is it because I don’t write dramatically or is it because he doesn’t stay ‘fixed’ so people are burned-out on hearing about him or what? I honestly am not angry or bitter…. I just don’t really understand what it is that makes some people’s blogs “take off” while other people whose children have similar or identical illnesses/problems stay tiny and relatively unknown.

They will submit!

These were on Kate’s Facebook page. She talks about ignoring the girls. It really is very sad. They almost sound proud to be so much “smarter” than two little girls.                                                                                                                                                                                                                                                                                                                     ignore edit ignore1 edit ignore2 edit ignore3 edit