Everyone has been asking us what happened to Tony this month so here it is.... Our month from hell.
While the rest of the world was dealing with the beginning of the Corona virus, our son was in the hospital fighting for his life. Rich and I can't thank all of you, from all around the world; friends, family, and even strangers, for praying so hard for our little man. It is nothing but a miracle that he pulled through the way that he did.
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.
His fever continued to baseline around 100 or so, and then would spike to over 103 in a matter of 10 minutes, each time his lips would turn blue and body would start shaking. The ER told us to bring him back if his symptoms got worse.
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 but she just kept telling me to wait it out.
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 Popsicles" speech, i didn’t want to expose him to Urgent Care so made an appointment for Monday to see his pediatrician. I was armed with a larger viral panel list that I was going to request, per the recommendation of another ADNP parent (thank you Jake and Amanda) who is a pediatrician.
In the morning they explained that his chest x-ray came back clear. They discovered that he had a mild UTI and sent it off for a culture. He also had some astronomical high inflammation labs which caused a lot of concern that it was an infection other than a UTI, so they started him on an antibiotics and discussed concern that this may have moved into a kidney infection but they wanted to give the antibiotics 24 hours. Fever continued to spike all day.
During morning rounds, labs didn't show a big improvement but they were hopeful that one more day on antibiotics would be his big turn around. Their thermometer was not working well with him under his arm, showing a normal temp even with him burning up so they backed off the fever medication and his fever spiked so fast that he was shaking and this time looking like he was in pain and refusing all oral meds and liquids, so they had to put in an IV. I made Rich bring me the ear thermometer from home which showed that he had a much higher temp than they were reporting. So 48 hours on the antibiotic and the fever was still in full force and the labs were still looking really bad, which had them all stumped!
Tony woke up with CRAZY high blood pressure and his face was so flush. He didn't seem to be responding to the meds (48 hours of antibiotics) 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.
Later in the day they were very positive and said that the UTI culture came back and the antibiotic they had him already on is what they would treat the UTI an kidney infection with and were hopeful he would be doing better tomorrow, which was insane because he looked 10 times worse.
That evening his night nurse (shout out to Erica, best nurse ever) was the same nurse he had each night since he got there. She saw him and was concerned because he looked like he was getting worse. Thank God!
I explained that I had been telling the nurse all day that he needed more fluids and looked dehydrated and was moaning with high blood pressure which probably meant he was in pain. I also told her that he had started coughing which he hadn’t been doing all week and that this was getting worse.
Nurse Erica 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.
After the x-ray they both became very concerned and said that his face looked grey and that she was worried that he wasn't getting enough oxygen. She and the nurse started checking his saturation levels and at 11:38 pm she looked at me and said, "start collecting your things because in about 2 minutes this room is going to be filled full of 15-20 people and we will be rushing him to the PICU because he was very sick and in trouble". (I know the time because I messaged Rich "get to the hospital right now".
Before I could even grab my purse, they told me to jump on the bed because he was crashing and they needed me to help them get the oxygen mask on his face. This was like trying to get a cat into a bath, Tony 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.
Once in the PICU 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 Corona and did a bunch of labs. Once he stabilized they started looking into what was going on with his lungs. They said that the x-ray showed a bad infection. They ended up using a bit more sedation and were finally able to get the oxygen mask on him but he was getting worse and said that a lung was collapsed and that he was getting worse and that they may have to intubate him.
He was still going downhill so they started getting ready to intubate him at around 10:00am. The room and hall again was filled with people.
The team came in to do the intibation, and they also had an ultrasound machine to check placement and an x-ray machine to check lungs.
This x-ray was bad news, it showed his lungs were getting much worse and that he was in acute respiratory failure.
The doctor sat Rich and I down and explained that they did everything they could but would have 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 that hIs lungs were so bad that they would need to do more. She explained the next steps they would do for life support, including things like bypass and other very scary things. In addition a, they knew nothing about ADNP syndrome did they were trying to find out all they could amist the chaos.
Then we had to have the discussion with the doctor that NO parent should ever have. We had to make a decision about how much life support we wanted for our child, we were crying and so worried and confused while all of these people were in the room working on our son.
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 do we donate his brain to 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 very good chance that he would not make it though the day.
By noon he was hooked up to the ventilator and they were now setting up the room like a little surgical center so that they could put in a PIC line. This group of doctors and nurses were the most amazing, caring and compassionate people in the world and I think it is the only reason we were able to function and not have a meltdown.
Later that day they also put in a Central line so at this point I think he had the PIC, the Central and 4 other IV ports...
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.
Stayed in a medically induced coma so that all of his energy could go to healing his lungs. They started him on anxiety meds because his blood pressure was going up whenever someone would touch him, so I think he was scared, which was heart breaking.
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 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! Yahoo!
He still had a fever which makes it day 12, and he's been on IV antibiotics since Monday.
He was still on the ventilator but they were able to lower the levels and he was tolerating it.
They were working at 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 and that the infection most likely moved to his lungs very quickly.
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 few more days.
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 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 first thing he said to me was “Dumbo Ride” and he’s been saying ever since. I think in his coma he was dreaming about it. I hadn’t smiled for days until I heard those words “Dumbo Ride”. When Disneyland reopens, Tony needs to be the first one on the ride 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 floored at how much he had improved and they expected him on the vent for weeks.
When more than one doctor tells you that they "didn't think he was going to make it", we realized just how strong our little 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!
They also came in and decided that they needed to get some IV lines put back in since the ones that were in were not working - not fun getting poked late at night when sleepy.
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 even with such high antibiotics, but it 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 place a PIC tube in, sedate him, and do a CT scan of his belly. I requested a brain MRI because of his history of atrophy and abnormalities but they said they could not do one which was a huge bummer.
Finally moved back to 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 the lockdown rules how they were going to call security if anyone tried to have someone else come in, the walked in, didn’t wash his hands and then started doing vitals on Tony. I get that they where making changes, and I was following all the rules happily, but this guy was angry and went off about how he wasn't being protected. We had beyond amazing nurses prior to this, but this was the guy who was going to take care of my son all night? I seriously started crying, he scared the hell out of me. 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. I no longer felt safe with his 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, but this guy scared me and I could see he was scared and it made me want to get my child out of that hospital no matter what!
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 Covid coming in full force 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!
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.
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 all therapy businesses are closed so not PT, OT, Speech or ABA.
He needs to be on 4 weeks of antibiotics for the kidney abscesses 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.
This little blurb is for the families of children with ADNP syndrome. Our children have ultra rare neurological genetics disorder and they don’t play to the same drum as normal children. I want you to understand that we need to be their voice and their advocate, kids like Tony who are non verbal and have a high pain threshold which make it nearly impossible to know if something is wrong or hurting. Talk to your doctor about not waiting it out when sick, start with labs, tests and scans 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. He proved them wrong thank God, and after hundreds of prayers we were able to take him home this week but his kidneys and lungs are still very very sick and something may have happened neurotically, we are giving it some time to figure it all out. Coming home to ZERO therapy when he desperately needs it is not helping so we pray that he can rally with us working with him.