Thank you so much for all your sweet words and promises of prayer on facebook. That meant so much to us. We are finally home after being at Phoenix Children’s Hospital since Sunday. Ty is happy, happy, happy to be home.
I know a lot of people are not fans of facebook but I love it. While I don’t post a whole lot to facebook, I really enjoy checking on those I care about via the only practical daily tool available to me. By a daily quick perusal, I am alerted to the joys and the pains in the lives of those I care about (and sometimes I come to care for those that I haven’t had the privilege of knowing yet). I must admit though, it can be frustrating to emotionally invest in a situation and be praying and then never have any REAL information on the topic. I am a detail girl. If I am following your story, it is because I am praying and I really do care. More oft than not, I will deliberately follow up and watch for news when people I care about are celebrating or hurting. All this said because I know some of the people who read this blog are truly invested and you want the details (and will likely feel frustrated by my vague facebook descriptions) so here is the whole story…
For months Ty has complained of tummy pain and head pain. Those two complaints often go hand in hand with the tummy pain being probably more dominant. In most cases, Ty makes a point (or several) to tell me but then he returns to his normal activity. I do not doubt the complaint but I also do not want to treat an ailment if he can sustain normal activity. The tough thing about it though is that because Ty has a very high pain tolerance, I often wonder how much I am asking of him. Again though, if his tolerance is high, he is better off in the long run avoiding a medication cycle that could ultimately prove to be more destructive than the original complaint.
Lately, I have noticed this complaint occurs during school a lot. One could argue that he is trying to get out of school and I can’t completely dismiss that but my instincts tell me that his complaints are always honest (he would use them to his advantage though if I would go for it no doubt). My recent observation is that Ty tends to swivel in his chair and the days I notice an increase in swiveling tend to be the days he complains a lot. One day he was spinning circles and he did get sick enough that I had to dismiss him from school. White lips are a dead give away that puking is imminent without an interception.
Ty is very motion sensitive and has gravitational insecurities. He tends to get car sick pretty easily and I notice that he rarely speaks or tics while in the car. When he is dealing with motion sensitivity or gravitational insecurities, the tics stop because his full attention is directed at the motion.
On Thursday morning, Ty went to his regular occupational therapy appointment. During that session, his therapist put him on a platform swing and swung him in a circular motion. Ten times clockwise then ten times counter-clockwise. She is aware of his motion sensitivities and was attempting to increase his tolerance slowly. This is a common therapy approach.
As I was watching this play out, I was at war with myself. My instincts were to request that we not move forward with that course because there could be consequences that I wasn’t in the mood to pay. On the other hand, I didn’t want to be a pain in the therapist’s neck and I knew what she was attempting to do and wanted to give that course a chance.
When Ty got off the swing, he let Bridgette know that his head and tummy were hurting and that he didn’t want to do that again. He didn’t want to do that EVER again. He could not do that ever again. She could not ask him to do that ever again. He approached the topic every way he could think of the entire hour until poor Bridgette was begging for mercy. He perseverated on the topic until Bridgette and I were both crying UNCLE and assuring Ty that we had registered his complaint.
We both noticed a change in his behavior from that point on. He was “off” the rest of the session.
Much to my dismay, Ty continued to perseverate on the topic for the rest of the day and on into Friday. I don’t know how many times he asked me to have a talk with Bridgette and make sure that never happened again. He continued to comment on the head and stomach pain all Thursday and Friday but was resuming fairly normal activity levels.
By Friday night, Jim and I noticed changes. In addition to the complaints, he spent his evening on the couch with Jim and I watching shows we knew him to have utterly no interest in. We registered that as odd. By Saturday morning, he was on the couch and didn’t get up. By Saturday night, was talking about his head over and over. Ty rarely ever cries nor does he express these things with an emotion that would allow you to grade the situation. You have to rely upon the perservence of the claim to assess the grade. We knew it to be time to medicate him so we gave him Motrin. Within minutes he threw it up. Hmmmm…. Stomach flu?
He slept through the night but woke with the same complaints on Sunday and was still not getting off the couch. He also stopped speaking. The only thing he contributed on Sunday was “Mommy my head really hurts”. We tried Motrin two more times and he threw it up within minutes both times again. I had a shoot Sunday evening so I left Ty in Jim’s care but all the way driving to the shoot I was haunted by the situation. Ty wasn’t crying. He wasn’t telling me “THIS PAIN IS A TEN”. He wasn’t moaning. But my little boy had disappeared. My Ty was just gone and that alarmed me more than anything else did. I was also getting choked up because I wondered how much we were asking of him. Exactly how much pain was Ty in that he couldn’t express? I was suspecting a whole lot and it was breaking my heart. By the time I left the shoot, I knew that if Ty had not improved by the time I got home, it was time for urgent care. I could no longer allow him to be in pain.
My brother David and I had a phone chat about it and he felt strongly that it was time for a CT scan. If you remember, we were supposed to get an MRI done last year because of Ty’s Alice In Wonderland symptoms. Ultimately that wasn’t done and I didn’t follow through. When Ty got sick in December and January, the AIW symptoms came back. During one particular episode, David was concerned about the possibility of intercranial bleeding due to Ty’s symptoms. (One night he was fevering, delusional and confused while having AIW symptoms). My explanation at that time was fever based delusions and neuro sensitivity due to virus. I, did wonder though if David was on to something so when the headaches from the hot place started, I knew it time to rule out a bleed issue. Because of Ty’s complicated birth history and brain hemorrhages, you just never know what may be happening and we hadn’t seen scans of his brain in years.
I took Ty to PCH’s urgent care on 51st and the 101. That was my first go to place because it was close to home and transport would be straight to PCH if necessary. The Dr. did a brief neuro exam. Ty passed that. Her conclusion was that he had a virus and wanted to give him motrin with zofran so that he could keep it down. She suggested a small possibility of an intercranial bleed but said she they didn’t have the equipment at that location to do it and she was sure it was unnecessary (all the while assuming I would agree). I did not agree. I let her know that I did intend to have a CT scan so I would be leaving and head for PCH Emergency. She then let me know that she understood and supported my decision.
Off we went.
We arrived at PCH at about 10:30 probably. The drive was miserable for Ty as was every step he had to take. Walking increased his headaches significantly (which is one of the reasons why he had not been getting off the couch). The CT scan was done and all was clear. Because we were at the same hospital where they had done his imaging as an infant, they were able to compare the results. Ty’s ventricles are still swollen (we expected that) but had not changed since he was 6 months. All agreed that an MRI was still in order to get a fuller picture and see the soft tissue but we were at least relieved to know there were no obvious issues (tumors, bleeding, fluid…etc). On a side note, the neurologist later told me that his CT scan was a dead give away for a micro premature baby born under 28 weeks because his right side cortebellum is significantly smaller than his left and she often sees this. She said that is the area of the brain responsible for motor control and coordination and was shocked at how WELL Ty does with motor coordination based on what she saw in the CT. Wow! Wish someone would have told me that years ago! I have long wondered if his coordination and motor issues (including his inability to hand-write) was associated to depth perception issues, CP, or just general Autism Spectrum issues. I researched this a little in the hospital and noticed a thread of people talking about wishing the medical community would acknowledge that the rise in autism can be directly associated to the rise in the survival of micro premature infants who are notorious for these diagnosis’s – thought that was interesting. It doesn’t change anything but you know me, I like to KNOW, and a significantly small right side cerebellum answers much).
While in the ER, Ty barely said a word. He didn’t look at or respond to the Dr.s without a lot of prompting from me. This did not surprise them. They knew he had an autism spectrum disorder and this seemed like typical autism behavior. They did not know how wrong they were and I spent a lot of time requesting that they trust mama because my little boy was no where in site and nothing about his behavior was even remotely close to normal. As the hours progressed, he continued to get more uncomfortable and I noticed very sad and painful looking tics start to play out across his face. I let the Dr know that for days all Ty’s normal tics had CEASED but that the tics he was now demonstrating had never been seen before (and they looked downright tragic as they were grimaces of terrible pain playing out in tics). That might sound confusing but a mother with a child with tics recognizes the difference between an expression and a tic and this was actually a pain induced tic (neurologist later confirmed that).
At about 2 AM they finally gave him what they described as the “Headache Cocktail” which was an IV with Reglan (anti-nausea), then Benadryl (anti-nausea plus affecting the capillaries to possibly help with pain) and Toradol. Toradol is a NSAID which is a nonsteroidal anti-inflammatory drug that is used for moderately severe acute pain. It is within the family of very strong ibuproffens. While the benadryl was dripping, Ty finally fell asleep.
At the conclusion of the cocktail, Ty was sleeping so the ER Dr. wasn’t sure what assessment to make of his pain. We decided to admit so that we could monitor the effectiveness of the cocktail when he woke. At 8:30 AM, he woke with a headache and tummy pain and also a 102 degree fever. That threw a wrench in. Now the assessment of staff was that he had a virus. I was not convinced. IF a virus was a play, my thoughts were that the virus was part of the migraine trigger but not the source of the pain. Neurologist agreed. We also questioned the potential for an infection somewhere in his body. He had a nasal swab test and no obvious flu virus was found. He had a strep test. No strep. They tested for meningitis but we all agreed that was unlikely. I did not want them to do a spinal tap because the odds of bacterial menigitis were one million to one and if it turned out to be viral meningitis it was likely to self resolve and there was nothing that could be done that we weren’t already doing anyhow so why put him through the pain and take a chance of increasing the migraines?
I asked the neuro team why they had not done a blood culture. They said they had ordered it. When the floor physician came on rounds I asked her why it hadn’t been done. She said “What is the point? The white blood count will only tell us what we already know. He is sick.” I (respectfullly) disagreed. I told her that I had spent a week at St. Joe’s with my daughter trying to find out if she had leukemia because of an astronomically high white blood count. I explained that there are “degrees of sickness” and sometimes those numbers are telling. She didn’t respond to that.
The next day, low and behold, the panel was run (again initiated by the neuoroligst). Guess what? The white blood count showed completely normal. As I said, that test would have been helpful the day before. Of course, then the explanation was that maybe he was on his way out of a potential virus thus a normal count. (I doubted that explanation).
By noon on Monday, Ty was doing decently. He wasn’t normal but vastly improved and was starting to talk more. They had dosed him with tylenol and that helped the fever and his mood. The Dr. later concluded that the Tylenol ended the headaches. I knew her to be wrong about that assumption and that later because quite a discussion between us. The toradol had not taken away the headaches. Ty was STILL complaining of headaches but I could tell by his behavior that he was in a better place than he had been. If toradol hadn’t totally cleared it though, there is no way in H E double hockey stick I was going to let them give Tylenol credit for that.
I think that Dr. would have released us per her noon assessment but I let her know I was not comfortable. (She later thanked me for that decision).
By about 2:00 PM, 12 hours after the migraine cocktail, I watched Ty head downhill. The complaints increased and so did the grimacy tics. At one point, I filmed Ty with my camera and sent the clip to my mom and Jim because I wanted people who knew Ty to see the intensity of his pain and I wanted to save it for the Drs should they hassle me later about pain control. It was so sad to watch it made family members choke up (I still haven’t watched it again) but it only got worse from there. He was writhing, holding his head, grimace ticing like crazy, and started to cry begging and pleading with me to get him out of the hospital (I tried my best to hide my tears from him so as not to create more anxiety for him but once he fell asleep, I was a wreck). They started the cocktail again and by 3:30 (once the benadryl started) he was asleep. During the IV I noticed him flush cherry red and was shocked at how quickly a 103 temperature came on. It wasn’t there and then it was…right out of the blue.
By evening, I was noticing the return of some grimace tics and Ty was starting to talk to me about his headaches again. I brought the nurse in and asked her to observe her face. I was making my case early on because I know exactly what happens if you start fighting for drugs in the middle of the night when Dr.s have to be paged to approve. I had a full battle plan laid out in my mind because there was no way I was going to tolerate a middle of the night argument about a third cocktail.
This is when the mild battle between me and the staff played out because the Dr had discontinued the cocktail (because of her belief in the effectiveness of the tylenol which I found to be flat asinine) – remember she had not been on the scene since noon and because she didn’t discontinue the cocktail order, it was automatically given when the crash happened at 3:00 PM. She came in to visit me and let me know that tylenol would be the order for the night. Ummmm….NOT! I made my case and let her know that based on the 3:00 incident, I was NO WAY going to go through that during the night while waiting on pages and new prescription orders. She wanted the cocktail given only if needed. Apparently, she didn’t add those details to the order though and at 11:00 the night nurse started administering the cocktail again pre-emptively. I didn’t argue it because I thought some rest would do Ty good. Once again, during the drip, he spiked a 102.8 fever and flushed cherry red. Coincidence? I asked the nurse to investigate and he said that the fevers came on during the reglan and then in the case of the third cocktail during the zofran (and both those drugs are in the same family). Suspicious. Was the reglan/zofran causing a reaction that triggered a swift high fever? That isn’t what happened with the very first fever as it came on 6 hours after the cocktail but one could argue that the initial allergy took longer to develop. When the nurse wanted to pre-emptively give a 7 AM dose I requested that we discontinue the zofran and see. No fever. Hmmmm.
(As I side note, I am going to take a moment to stress how important it is for EVERY child to have a parent advocate because on more than one occasion I had to intervene in Ty’s care. For example (and this is just one), during one of the sudden fevers, I requested a fever check (because hello – he was bright red with glassy eyes and burning up) and the nurse put the thermometer under the tongue (which Ty doesn’t do well) and then told me he was at 100.6. I said “Uh…no he isn’t at 100.6. This is not a 100.6 fever”. He showed me the thermometer. I again stated my case expecting he would retest. He didn’t. I then requested that he lay his hand on Ty’s chest and tell me if that felt like 100.6 to him. He then retook the temp under the arm and guess what? 102.8.
PCH has wonderful staff and it is not my intent to make disparaging complaints. I owe them too much for that. The fact of the matter is though, they have far less skin in the game when it comes to MY child than mom does and they also don’t know my child so it is imperative that parents trust AND VERIFY. I have learned through multiple admissions now that if something goes against my gut that I need to follow up and trust myself (even when that annoys the heck out of the staff that mom is seemingly neurotic). Most of the time, those that seem to find me off-putting come around and we have a good camaraderie going by the time I leave.
I put over 1000 miles on my truck to that hospital last year alone and I have seen a large percentage of their specialists so I have personal experience on a whole lot of topics with having three premature children. Doctors don’t know my history though so I have to give them reason to trust me and earn their respect. We both are obligated to that. )
After that dose, Ty began to improve. Urine analysis came back fine, cultures fine, every test was normal. The only odd thing was that late Tuesday night I did notice some of the grimace tics again, confirmation of headache and tummy pain, and for no apparent reason, he flushed bright red with a fever of only 100 (he wasn’t that hot this time). I thought that bizarre and have never seen a kid flush while sitting on the bed with no real fever. I have no explanation for why that happened but nothing came of it.
By Tuesday evening, my happy little boy was back. He was talking every one’s ear off, telling us how happy he was about everything, how wonderful the hospital, the staff, the bed, the food was…typical loving, amazing, wonderful Ty. The staff was utterly lovestruck and acknowledged that they had only just now met our sweet boy.
He moved the nurse to tears when she took his blood sample and then he said “You are such a nice Doctor. Can I give you a hug?” Big smile on mama’s face because THAT was the kid I know.
This morning when the neuro resident woke him up he was greeted with a big smile and a very cheerful “HELLO”. Dr. immediately proceeded to exam his feet (neuro testing) and Ty lets out a long sigh and says “Awwwwwww that feels so nice!”. Both neurologists in the room cracked up and agreed that waking my boy up was the joy of their day.
When we were finally released today, Ty was thanking everyone, telling them how wonderful his stay had been and how happy he was about everything. While walking to the car he says “Mommy. I am so happy. Wasn’t this nice? Isn’t this a great day? I don’t even remember Monday and Tuesday!”
What a statement! Clearly he DOES remember Monday and Tuesday or he wouldn’t have referenced it so specifically. Instead, he was making a deliberate choice to FORGET the last few days and cling to the wonder of this day. That is what made his mama cry. Oh how I want to grow up and be exactly like him. I am constantly humbled to be given such an amazing blessing.
We have no idea what in the heck this is about. Neurologist wants him in PCH’s “Headache Clinic” and she intends to run an MRI and EEG. We couldn’t do the MRI while in the hospital because he couldn’t go under anesthesia while being febrile so we have to wait a little bit on that. We are suspecting that migraines are the issue at this point because that would explain the Alice in Wonderland symptoms too but the fevers did confuse matters so no one is ready to commit yet. Should the headaches come back, I was told to take the following steps. First, give Tylenol and sleep. If that doesn’t do it move on to motrin and a coke (the caffeine helps). If he throws up the motrin, I can give motrin with benadryl because benadryl is known for helping nausea and can be safely used in conjunction with motrin. We decided I should not attempt zofran or reglan in case he DOES in fact have an allergy. (When he was a baby, he used to flush bright red from his reglan doses and that always bothered me and was one of the reasons I got him off that drug). After that, a prescription of naproxin can be called in dosed appropriately for a child OR we take him back to the ER. Ultimately, there are abortive drugs and maintenance drugs but I REALLY don’t want to have to make those decisions because these drugs are nasty business with some horrible side effects so I am praying that we will not have to go there. Because the toradol was not 100% effective, I was warned that the next step, DHE, was a real doozy and we did not want to have to give that to him unless absolutely necessary. I still want to get to the bottom of why he is continually complaining about headaches and tummy aches regardless of the fact that he can manage the pain most of the time but I guess this will just be a process. I also want to work with Ty on learning how to grade his pain. This is a toughie with a kid with asperger’s. In the ER they were asking him the 1 to 10 scale questions and he was telling them 16. They then tried the pain faces and got very inconsistent responses. I reminded them that showing faces to an Aspie was going to be highly ineffective. The only real way to gauge his pain is by observation. As Jim put it, we have a 3 point scale in our home. 1 is no pain 2 is pain and 3 is mommy and daddy are intervening because pain is observable. Ty just has no way of expressing degrees of pain. There is pain present or there is not but that is all you can get him to say. Our observations though are that if Ty is having pain that he is struggling to manage, he will do the following (and probably in this order)
* Lose interest in all his normal favorites
* Sit in a quiet place and watch tv (or give the appearance of that because he is clearly not invested in it)
* His normal tics (which I now coin the “happy” tics) decrease (no head shaking or rocking). I didn’t observe these near constant tics for days.
* Perseverating on pain (continually mentioning it at the exclusion of all other topics)
* Grimace tics appear
*Crying which he will blame on anxiety instead of the true source pain. For example, “I just don’t want to be in this hospital please get me out of here”.
The grimace stage is the 8/9 and the crying is the 10 in mommy’s opinion. (Tanner and Tori will cry at a 3 by the way :). His body tells me how bad it is because his mouth simply cannot.
As usual, this is more info than most ever wanted to read and I will be surprised at those that comment on getting all the way through it but again, this journal over the last decade has been invaluable from a medical standpoint alone because I have consistently kept detailed notes here that I have to refer to from time to time. Beyond that, it is my attempt at FORGETTING MONDAY AND TUESDAY! Now I will go embrace the wonder of THIS DAY.