Everyone has been asking what happened to Superman (Tony) this month so here it is.... Our month from hell - and although he had ALL of the symptoms of a severe case of Covid-19; he has tested negative for Covid and also negative for antibodies, leaving us stumped as always!
What was the Kryptonite that took down Superman in 9 days into a full medically induced coma fighting for his life? ADNP!
ADNP Syndrome hits some kids so much harder than others when it comes to illness, and Tony is no exception. He can power through open heart surgery, but infections, they just seem to be getting worse.
Thank you to our friends, family, and even strangers, and all of you for praying for Tony. It is nothing but a miracle that he pulled through the way that he did.
TO PARENTS OF CHILDREN WITH aDNP SYNDROME - CLICK HERE TO EXPAND
Our children have ultra rare neurological genetics disorder and they don’t play to the same drum as normal children. When they are sick, Ying is Yang and Yang is Ying, I want you to understand that we as parents need to be their voice and their advocate, Children like Tony are non verbal and have a high pain threshold which makes it nearly impossible to know if something is wrong or hurting, but usually our Mommy-Gut is telling us something is very wrong. Talk to your doctor about not 'waiting it out' when sick, start with labs, tests and scans ASAP and tell them when you feel like something isn't right. Tony has a compromised and weak immune system that hits him hard and fast, creating very serious illnesses that don't present in the typical way. This happened to him on March 3rd. He spiked a fever and 9 days later was on life support fighting for his life. Every single doctor who was there when he crashed said that they did not think he was going to make it. If it wasn't for me and our nurse advocating so hard for someone to take a better look, he would have died.
TONY'S "DOERNBECHER DREAM TEAM" WHO SAVED HIS LIFE- CLICK HERE TO EXPAND
We owe a gigantic THANK YOU to “Dream Team” at OHSU Doernbecher Children's Hospital. His miraculous improvement is because of the fine work that the amazing Pediatric Critical Care team of healthcare workers did to save his life and help us being our son home.
Nurse "Erica" (I am still trying to find out your full name) saved his life by finally listening to me and agreeing that he was getting worse. In the PICU, Dr. Felmet and Dr. Lewis were amazing and so informative and all and all, a really great team who talked to us in a way that we could understand what was going on. And a special thank you, to the woman with probably the hardest job, Dr. Vanderford for having to sit down and discuss that they didn't think Tony could hang on much longer and had to have the DNR talk with us while we were balling our eyes out. She was a rock and compassionate and that can't be an easy job. It makes me tear up just thinking about that conversation and the thought that we had to have a real conversation about loosing our child.
In the ER, they did a review of his symptoms, which were nothing other than a fever. He had no cough, no runny nose or any vomiting. So they did a Flu/RSB test that came back negative and sent us home.
I called Kaiser again because I felt like something was not right, he was not getting better. I was concerned at the length of a fever with no other symptoms but the nurse said fevers like this could last for over a week. I explained that this seemed like something other than just a fever and that he could not talk and had a high pain threshold, but she just kept telling me to wait it out, but my mommy instinct felt like something was off so I started recording him and taking pictures.
I called Kaiser again and the nurse told me he was probably dehydrated despite the fact that I told her many times that he was drinking and having wet diapers. I got the generic "offer him drinks and popsicle's or take him to Urgent Care" speech, but I didn’t want to expose him to more germs so
I made an appointment for Monday to see his pediatrician.
Monday, in the morning they explained that his chest x-ray came back clear and that they did discover he had a mild UTI, which was strange because he is 12 years old and has never had one in his life, so they sent it off for a culture. He also had some astronomically high inflammation levels in his blood which caused a lot of concern that it was an infection other than a UTI, so they started him on antibiotics and discussed concern that this may have moved into a kidney infection but they wanted to give the antibiotics 24 hours. And of course, the fever continued to spike all day.
Tony woke up with CRAZY high blood pressure and his face was so flush. He didn't seem to be responding to the meds and still had the non-stop fever. They where stumped so they changed up his antibiotics and thought he could have a kidney infection and ordered an ultrasound to look for kidney abscesses.
It seemed like that day I had to keep asking the nurse to check his temp and blood pressure and kept asking for more IV fluids because he was still not wanting to drink anything and was looking dehydrated and they didn't seem too concerned, but I was very concerned!!!
That evening his night nurse (shout out to Erica, best nurse ever) who was the same nurse he had each night since he got there, took one look at him and was immediately concerned because he looked like he was getting worse. Thank God, someone finally saw what I kept telling everyone!!! She started asking me questions and listening to my concerns. I LOVE NURSE ERICA!!!!
I explained that I had been telling the nurse and doctor all day that he needed more fluids and looked dehydrated (his lips were even peeling). He was moaning, coughing and had really high blood pressure which, since he can't talk, probably was his bodies way of telling us he was in pain. I said he is getting worse not better!
Nurse Erica took charge and called the Attending Physician in and she agreed that he didn't look good so she ordered another bag of IV fluid and for someone to come into the room ASAP to do a chest x-ray. These two woman are the first two that I refer to as “Tony’s Dream Team”!
After the x-ray, they both became very concerned and said that his face looked 'grey' and they were worried that he wasn't getting enough oxygen. They started checking his saturation levels which were alarmingly low and put him on oxygen.
Around 11:30 pm, the doctor looked at me and said very matter of fact; "don't panic, start collecting your things, because in about 2 minutes this room is going to be full of 15-20 people and we will be rushing him to the PICU because your son is very sick and in trouble".
Before I could even grab my purse, they told me to jump on the bed because he was asleep and hardly getting any oxygen and they needed me to help them get the oxygen mask on or near his face. Tony woke up and was afraid of the mask. Getting an oxygen mask on Tony was like trying to get a cat into a bath,. He was freaking out and was NOT wanting that mask anywhere near his face. They rushed us through the hospital halls to the PICU where even more people were waiting for him, it was terrifying but I was trying to keep calm and trying to remember to tell them all of his medical conditions and the symptoms that I had been recording on my phone all week!!!!
Once in the PICU, it was like a scene on ER, people everywhere. It was a constant battle to get the oxygen near his face even with some Verced and Ketamine to calm him down. They also immediately tested him for Covid-19 and started looking into what was going on with his lungs. They said that the x-ray showed a bad infection in his lungs that literally popped up over night. He was getting worse just from the x-ray hours before, a lung was collapsed and the other looked worse, so they decided to intubate ASAP. This was probably around 4 am in the morning now.
The team came in to do the intubation, and they also had an ultrasound machine to check placement and an x-ray machine to check lungs. The x-ray was bad news, it showed his lungs were getting much worse and that he was in acute respiratory failure.
This photo; the doctor was so incredibly caring and could tell that Tony was frighten even though sedated, so she rubbed his head and talked to him. As a mother who had to stand at the end of the room, away from being able to touch him, she probably has no idea how comforting it was to know that she was understanding of his severe cognitive delays and showed compassion to my sweet little boy who is 12, but cognitively about a 24 month old. Not everyone sees him and understands how delayed he is, so I was so thankful that she stepped in and comforted him during what I am sure was terrifying for him.
A different doctor now came and sat Rich and I down and explained that they did everything they could but that they had to put him on a ventilator and paralyze his body and put him into a medically induced coma so that his lungs could heal. She was concerned because he had been on the vent for some time and he was getting worse. She had to explain the next steps if this didn't work in terms of different life support equipment, including things like bypass and other very scary options. To top it all off, they had never seen an ADNP syndrome patient before were were very concerned that this could have neurological consequences like more brain damage.
Then we had to make the decision that NO parent should ever have to make. How much life support we wanted for our child and how far we wanted them to keep him alive if he continued to crash, We were crying and so worried and confused while all of these people were in the room working on our son, it was unreal.
These terrifying thoughts went through my mind, "how could this happen from a fever?", "was he suffering?", "would bypass cause more brain damage?" and even "if he dies, how do we donate his brain to ADNP research?".
A week ago he just had a fever and now he was on life support in a coma fighting for his life and we were being told that there was a high probability that he would not make it though the day.
By noon he was hooked up to the ventilator in a medically induced coma and seemed to thankfully stabilize, so they were now setting up the room like a little surgical center so that they could put in a PIC line into his neck.
Later that day they also put in a Central line so at this point I think he had the PIC line, the Central line and 4 other IV ports... he was like a human pin cushion.
For the rest of the day/night, Tony was in a coma hooked up to a bunch of machines that were being closely monitored to keep him breathing.
Tony stayed in a medically induced coma so that all of his energy could go to healing his lungs. They started him on meds because his blood pressure was shooting up really high. Looking back, I took some pictures of his blood pressure readings, they were 134/92(104), 148/99(109), 141/120(128), 151/98(114), 162/97(114), 163/89(105)... Now we hear that high blood pressure is causing complications in Covid, his blood pressure started shooting up hours before he went into respiratory failure. His oxygen levels were better today than yesterday, but the machines are doing the breathing for him.
We were on lock down waiting for the Covid test to come back. His other labs came back showing the kidney infection levels were reducing a little, but they had to put in a central line which was a bummer, so many things getting stuck into my sweet little boy.
The Covid test came back NEGATIVE! This stumped everyone. Additionally, he still had a fever which makes it day 12, and he's been on IV antibiotics since Monday. The labs showed his inflammation going down, but he still had a fever.
He was still on the ventilator but they were able to lower the levels and he was tolerating it. They continued to work on trying to get his blood pressure and heart rate down because they kept spiking very high.
The next step is to turn off the paralyzing medication so that he could start work on breathing a little on his own. They removed the medication but Tony was still not able to breath on his own but he was getting a couple of his own breaths. He was starting to really swell up and his fingers looked like little sausages.
They also confirmed that he had kidney sepsis. They explained that his lungs were very sick but getting better and that we should expect him to be on the ventilator for at least a week or two.
The next step plan was to repeat the ultrasounds, x-rays and labs and they were discussing an abdominal CT to hunt for the source of the fever.
Today they did a lot of testing. They even started doing some "test-runs" off of the vent to see if he can breath on his own and he did a decent job. They were all very surprised, but he is "Superman".
They did lots of labs again because he STILL had a fever. The repeat ultrasound showed no kidney abscess.
They put in a nasal feeding tube to start getting some nutrition in him but then there was an issue of him being too sedated to get his belly working so they stopped the food. He was surprising the doctors because his lungs were looking much better than yesterday, but that damn fever still had them stumped and worried.
Today they removed him off the ventilator and lowered sedation. He finally opened his eyes for the first time since he got to the PICU, He as NOT happy, but he was awake!
The cutest thing was, the first thing he said to me was “Dumbo Ride” (which is one of his 50 or so words that he says a lot) and he’s been saying ever since non stop, like 1000 times a day non stop... I think in his coma he was dreaming about his favorite ride. I hadn’t smiled for days until I heard those words “Dumbo Ride”. When Disneyland reopens, Tony needs to go to Disneyland because he clearly was fighting for his life to get on that Dumbo ride. 🤣
His SATS were low, so they kept him on oxygen. They were trying to figure out how to clear the junk out of his lungs since he can't cough so they decided to order a vest that will "shake" his chest to loosen up the junk. They just watched him really closely today to make sure he was getting enough oxygen and that he was stable and the plan was to start the feeding tube tomorrow.
The doctors all came in excited and told us that they were absolutely shocked at how much he had improved and they expected him on the vent for weeks. They all agreed, he might just actually be Superman!
At least a half of dozen doctors told us, "we didn't think he was going to make it through that first day", which is a testimony of just how strong and amazing our little ADNP Superman really is. God had his hands on him, and he still has a long road ahead but he was moving in the right direction. But he STILL had that damn fever!!! With oodles and oodles of antibiotics, they still had no clue???
He did the "shaking" vest, which was quite an adventure and got some good coughing action, but defiantly not a fan at first. They also started the feeding tube.
Later in the day it was a bit of a roller coaster. Earlier he seemed to be doing a little better but then his blood pressure and heart rate shot up like crazy, you can see his cheeks got so flush when I took this picture. He spiked a fever again and pulled out his feeding tube.
Everyone is still stumped. 15 days now with a fever, even on numerous iv antibiotics. He was miserable all evening and he would not even take a sip of water. He had 16 holes in him from all the IV's and central lines, with stitches and cuts all over his neck and wrist from the big lines.
This night was also VERY bad because they stopped his sedation med and he was in morphine withdrawal HELL all night long!
Still in the PICU and he is finally tolerating the liquid in his nasal tube without getting sick.
They ran more x-rays and ordered a test for CDIFF which would cause all of the symptoms after a traumatic event with such high antibiotics, but it too came back negative.
He continued getting the shaking vest treatments and he started really loving them. I think it is a sensory thing and he would fall asleep while having this crazy vest shaking him around.
The also did ANOTHER kidney and tummy ultrasound that came back good so tomorrow they are going to sedate him, and do a CT scan of his belly.
Finally moved back to the normal part of the hospital and out of the PICU. They did a CT scan of his tummy finally and ended up finding out that he had a bunch of abscesses in his kidneys. No one had any idea how the two ultrasounds didn't catch this, but at least we know why his fever is not going away.
They had to put in a new IV because the neck IV kept kinking. He got some new IV antibiotics and they felt this would be a better first step because they didn't believe they were large enough to do a procedure to drain them. He finally felt good enough to suck his thumb (he has his entire life) but for 99% of the day he was either moaning or sad, or grunting and grumpy.
Last night was my breaking point and I just wanted to get my son home.
The night before we had a new night nurse named Rick who came in from the start irate and agitated, and quite frankly scared the hell out of me. He started telling me about all of the new lockdown rules and how they were going to call security if anyone tried to have someone else come in. He seemed very stressed which stressed me out, at one point he walked in, didn’t wash his hands and then started doing vitals on Tony. He was angry and went off about how he wasn't being protected. Then he walked over to where the boxes of sterile gloves are on the wall where some had fallen all over the floor in the corner and reached down and grabbed them, read this correctly.... "off the dirty filthy floor and he PUT THEM BACK IN THE BOX with the sterile gloves".
Oh my God, #safetyfail - these are gloves that they use to clean and treat my sons wounds, change his IV's, etc. It was an epic lack of safety during a time of this Covid pandemic and it scared the hell out of me. We had awesome nurses before this, but this guy..... I just no longer felt safe with him as Tony's nurse and got all Mamma Bear and told him that was disgusting and to take those out of the box and throw them away. He grabbed them out, threw them in the trash, walked out and slammed the door. I was so upset that I called my sister who is a nurse and she called the head and we were able get him away from Tony, thank God! Every other nurse was amazing.
I had a long talk with his doctors both in the day and the night, about what was needed to get him home. This was not a safe place with the unknown of Covid coming and they agreed. They said I needed to do everything I could to get him to eat and drink on his own, which he was still refusing, and he’s the kid who eats nonstop! It was like everything that he use to love, he hated. A sip of chocolate milk was like a sip of vinegar, and he would pucker his lips and say ALL DONE!
I asked them to take out the nasal tube because I felt like that was bothering him to swallow and he became much happier. I worked all day on getting him to eat and drink. I asked them to take out the IV in his arm so he could move around and I think that made him feel better. I was able to give him his oral meds in yogurt which is one of the things needed to go home! This day was so strange, the entire 9th floor seemed to be empty, like a ghost town.
My friend Ann Marie brought some amazing pastries that were like magic and Tony scarfed one down right in front of the doctor, which is exactly what I needed him to do!
After a lot of back and forth of me debating with the doctors on why Tony should come home, they finally agreed that it would be safer for him since he is stable and off all equipment.
MARCH 21 - WE ARE HOME!
He is very week, lost a lot of weight and has a long road to recovery, which is going to be made even more difficult because school and all therapy businesses are closed so no PT, OT, Speech or ABA.
He needs to be on 4 weeks of antibiotics for the kidney issues and then do a repeat sedated CT and scan of his lungs. His immune system is shot, he is so incredibly week.
Our biggest goal will be to keep him hydrated and walking, which will help shake the junk in the lungs. We are hoping to get his school to send his therapy bike since that is easy for him to use. Lots of wound care, I counted when we got home, he has 28 holes from all of the IV's and lines, and a lot of them are a little red.
We are so happy he is home. It is crazy to think that a week ago he was in a medically induced coma on life support. They told us we would be there for weeks. He really is Superman!
MARCH 22 and beyond:
Tony is having a very difficult time at home. We are currently going back and forth with doctors on next steps. We may have to have his brain checked out soon, but they are going to try to work on some different meds. We are praying that he has no brain damage from this. His fever is down and the antibiotics seem to be helping the kidney infection, now we have to figure out what else is wrong. He isn’t even close to himself and just wants to watch “football” or ask for “Dumbo Ride,” followed by “airport”. He’s not drinking or playing with his iPad and having what seems like panic attacks when he goes to bed. He desperately needs therapy and went from 5 days a week therapy (PT, OT, Speech and ABA) plus school to NOTHING. Plus he rehab so bad. Still needing prayers.
UPDATE: We are currently trying to get Tony an Antibody test to see if his Covid test was a false negative. Of most interest from one of this doctors is the fact that Tony has sensory processing disorder and puts EVERYTHING into his mouth 24/7. He licks his hands all day and touches everything. He rarely gets colds even when the rest of us in the house do. He may have built up such a tolerance to other Coronaviruses, that his antibody's were so high that it helped him recover in a miraculously fast time frame. In fact, his Infectious Disease doctor said that his lungs went downhill so fast they didn't think he would make it, but even when he stabilized, they expected him to be on a respirator for at the least a week, probably two and he was off in a few days. They thought he would be in the PICU for 2-3 weeks and one week later he was home.
All and all, we are so happy and so thrilled that Tony is home and getting healthy and we pray that this all gets figured out soon. Keep praying for our little man! Thank you everyone!
UPDATE #2: Tony has tested negative for the anitbody test. This is just really stumping everyone. How could he have all of the symptoms, the severe symptoms, and even things that were not known at the time to be linked to Covid and not have it? Does he have some other mutated strain? We have no idea, but we do know that we now have to be on full lockdown with him until there is a vaccine to protect him. It is simply shocking that this all could happen out of the blue - WHAM - and it not be Covid. Now what???
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