I recently realized that I haven’t updated my blog on Avery for the last 9 months or so…oops. As you can see by the title of this blog, we have been a little busy. The last update was at the beginning of December when we were trying to figure out why she was vomiting and generally unwell. A lot has happened since so I will try to bring you up to speed.
The Friday between Christmas and New Year’s Eve, shortly before Joe and I were both supposed to leave for work, Avery had another full-blown tonic-clonic seizure. Having been through this before, we knew a little better how to handle it, but that didn’t make it any easier to watch her eyes roll back and her face turn blue. Joe called 911 while we hooked up her IV to give her sodium and dumped some salt into water and started pumping it through her g-tube. With shaking hands, I used the rectal diazepam we have to help stop the seizure and within about 10 minutes, she was no longer shaking. She still wasn’t really conscious when the paramedics got there so we scooped her up and off we went to the local ER during a winter snow storm where we waited 4 hours until the transport team from Lurie could make their way through traffic and bring us downtown. She was very disoriented the rest of that day, but by the next morning, she was back to normal. They kept us a couple extra days to monitor her and make sure she didn’t have a line infection that caused this seizure. I was so happy when we were released on New Year’s Eve, because I really didn’t want to start off a new year in the hospital.
Twelve days later, we were back in. I caught the flu on a Monday and in the middle of the night on Wednesday, Avery woke up with a high fever. I knew without a doubt that she also had the flu, but because of her line, she is required to be inpatient at least 48 hours for every fever to rule out anything else. After a quick 3-day stay and some Tamiflu, we were out again.
Mid-February, she came home from school with a high fever and was admitted again. Although she presented like a line infection, nothing ever grew back in the blood cultures, and never did find the cause of her illness. During that hospital stay, Avery was put on total parenteral nutrition (TPN). I was (and still am) completely against it. There is so much involved with being on TPN and it can cause so many problems with your liver and other organs and I really didn’t think it was necessary given that Avery can still eat orally. I was out-numbered, and she went home 7 days later, now having to be hooked up to her IV for 12 hours per day.
In March, it finally happened. It was the FIRST MONTH SINCE JUNE THAT SHE WASN’T ADMITTED ONCE!!! Avery turned 6, and it was a medically unremarkable, birthday-filled March. It was glorious!!
Then came April. Well, April showered all right…actually, it was more like a torrential downpour. Joe and I were two days into our stay-cation when Avery once again was sent home with a fever. Avery has been getting these really small fevers a few times per month that never get to 101 and usually disappear by the next day, so we were really hoping that it was one of those. No such luck. Her fever remained fairly low throughout the day, but around 4 pm it went from 101.9 to 104.3 within an hour, so Avery and I headed into the ER. We were still optimistic that it would be a quick 48 hours and we could enjoy the last few days of our vacation, but that never happened.
Everything started out the same, high temp, respiratory and heart rates, but nothing crazy. We were waiting for them to clear a bed on her normal floor, when she started taking a turn for the worse. Her blood pressures started getting low…really low. They started giving her fluid boluses to increase her pressure. After a couple boluses and no improvement, they switched to the push-pull method of infusing, which is a way to get the fluid into her faster. I was texting Joe at home, keeping him updated, and he asked, “How serious is this?” I told him I didn’t know. And he asked me, “Well, is she gonna die?” He was being a smart ass, of course, and I said she would be fine, but those words would come to haunt me only a few hours later. After 6 boluses and her blood pressure continuing to decline, they started to get more aggressive with her treatment. They put in two peripheral IV lines to have more access, and to begin giving vasopressors. She was in bad shape. She was getting worse by the minute and they had her blood pressure monitor taking pressures every 2 minutes. I watched those monitors like a hawk, hoping each time the reading would come up. It quickly became a true emergency and instead of having the usual nurse or doctor in her room, they had two nurses from the ER, two nurses from ICU, 2 doctors from ICU and 2 doctors from the ER all standing in and around her room trying to make minute by minute decisions. I found out later that the doctor who first saw Avery in the ER that night stayed more than 3 hours past his shift just to be there for her. They told me that Avery was going to the ICU instead of her normal floor, so I loaded up my bags and got on the gurney with her to be transported to the ICU. I sat on that bed with her for 2 more hours, because she was too unstable to even transport to the ICU. The doctors were giving high dose steroids to help her body stabilize, but her blood pressure still wasn’t improving and her kidney function started to decline with no urine output. Her extremities were cold and mottled and not being well-perfused. Although Avery’s respiratory rate was very high, she wasn’t struggling to breathe, but they decided that she needed to be intubated so they could take away the work of breathing and her body could just focus on fighting the infection. She was in full septic shock. I wasn’t ever truly worried until they said she needed to be intubated. My mind was racing, and I just told them to do whatever was needed. They brought her down the hall to the intubation room, where we were surrounded by so many doctors, nurses, respiratory therapists and anesthesiologists that I quickly became fully aware of how critical this situation was. It was chaos. They gave her the fentanyl to start to relax her to place the tube, but just as they were putting the mask on to give some gas, they gave one more dose of steroids and by some miracle, her blood pressure started coming up enough that they decided to wait on intubation. They transported her up to the ICU and started putting in an arterial line which had to be stitched into her arm and gives second by second accurate readings of her blood pressure. Since her kidney function wasn’t great and she couldn’t pee, they had to catheterize her to drain whatever urine was in her bladder. Thankfully, she was so doped up on meds, she didn’t really know what was going on. By this time, it was 4 am and I was finally able to update Joe. He got there as soon as he could and we spent the rest of the day by her side watching her blood pressure closely as they weaned her off the vasopressors. They kept giving her high doses of steroids to aide in getting her off the pressors, but between the steroids and 8 fluid boluses they had given in the ER, she was swollen beyond recognition.
By that night, she was completely off all vasopressors and her blood pressure was holding with only the help of the steroids. I felt myself breathe again. Within 10 minutes of getting in my chair to fall asleep, her oxygen monitors started going off. She was breathing very, very fast and shallowly and her oxygen was in the low 80s/upper 70s despite being put on wall oxygen. She was very uncomfortable and I sat on the foot of her bed all night, not sleeping, to keep an eye on her oxygen levels. They ended up having to put her on a special oxygen machine that forces air into the lungs. Once she was put on that, she could rest again and was more comfortable, though still breathing rapidly. They did a chest x-ray and said she had severe pulmonary edema from all the fluids she received. She stayed on the machine until Saturday morning when she was switched to the wall oxygen. After being able to maintain her oxygen levels throughout the day on only wall oxygen, they were able to finally let us get out of ICU and up to her normal floor. She was able to come off the oxygen altogether, but after a few hours she required it again. For the next few days, she required oxygen off and on, as her body worked to get all the extra fluid off of her lungs. By the middle of the next week, she was finally discharged. It was a scary and stressful admission, and really the only time I have actually feared for her life since this all began.
The fun continued a mere 9 days later, when I woke up feeling funny. During my workout, I noticed my balance was off. I felt like I was being pulled to the right and had a hard time keeping myself from falling over. I started to see some dark spots, and then I noticed that I had lost peripheral vision in my right eye. Being the badass, or maybe just ass, that I am, I finished my workout, got Mady ready for school, and took Avery to the hospital to get her g-tube changed out. Then I went to work. I was feeling very dizzy and motion sick and had a pretty bad headache, but I attributed all this to the vision loss that was throwing my balance off. My friends at work told me to go to the hospital, but I wanted to wait until the next day to see if it got better. They all thought I had a detached retina, as our co-worker experienced this a few years before. When I woke up the next day, my peripheral vision was still gone, so after work I drove myself to the ER. The doctor did an ultrasound of my eye and didn’t see anything, but he said it was a very limited study and he told me to go see their ophthalmologist on Monday. When I saw the ophthalmologist Monday afternoon, he told me that my retina was fully intact. He said I needed a stat MRI of the brain. I went that evening to get an MRI and when I was done, they wouldn’t let me leave. That wasn’t a good sign. I waited until the nurse handed me a phone with my doctor on the line. I can still remember the true shock I could hear in his voice as he told me that I had had several strokes. He said that I needed to go immediately to the main hospital to be admitted and find out what was causing the strokes. I drove myself home to get my bags and tuck the girls in, and then Joe drove me to the hospital. It turns out that I had one major stroke and at least 6 or 7 mini strokes in 3 different areas of my brain. During that quick 2-day admission, they discovered I had a PFO (a very common congenital heart condition that means the flap between my left and right atrium didn’t fuse properly) which could allow clots to get into my arterial circulation and go up to my brain. They said it would be a straightforward fix and I was so happy to, for once, have a quick answer and a solution to my problems.
At the end of June, Avery once again developed a fever and was admitted for a 6-day stay with another line infection. I had my PFO closure on July 19 which ended up being a huge waste of my time. The doctors tried 4 different sized catheters to try to put the devise through the opening, but were never able to do the closure. They had no idea from that point what to do, or what caused my strokes. I was left with a massive bruise on my groin that lasted 4 solid weeks and quite a bit of pain that came with it. All for nothing. I am still so bitter about it. I decided to go elsewhere for help. I saw a neurologist and cardiologist at RUSH to get some direction on where to go from here, but that was such a nightmare that I literally got up and walked out of the appointment when the first doctor stepped out to get the attending interventional cardiologist. I gave up on finding an answer to my stroke problem that day. I honestly don’t have the time or energy to devote to finding answers for myself when there is so much still going on with Avery.
In the middle of August, Avery had another seizure . This time it was short, lasting only about 3-5 minutes. She was very confused the rest of the day, but since she came out of it on her own, we didn’t take her to the hospital. A couple weeks after that, Avery’s nurse at school called to say that she was “twitching.” I was at work, so Joe drove over to the school, took one look at her and scooped her up to go home and hook up her sodium. She never lost consciousness this time, but wasn’t really talking and seemed very out of it. She has been having these episodes for the last 8 months or so, when she seems confused and stares off to the left and moves her mouth a lot. She says weird things that don’t make any sense. Once, Joe had her on the bed while he was getting ready for work and she asked him if he could get her out of the bath when he was done. She wasn’t in a bath. We always assume that she is low on sodium when she starts to act this way and after a couple of hours replacing her, she always seems to come out of it. Her GI team and neurologists believed that these episodes were seizures, not sodium imbalances. They confirmed that it wasn’t her sodium after her last episode when we drew her labs right away and they came back normal. She had her 5th EEG two weeks ago and her neurologist called me last week to tell me that Avery has been formally diagnosed with epilepsy in the temporal lobe causing complex, partial seizures. Avery just started on seizure medication this week and we will wait and see if any more of these episodes occur. They said it will be complicated with Avery, because she does have confirmed seizures from low sodiums, but now also has epilepsy as a separate issue, so her neurologist said that it will be hard to tell when her seizures are from sodium or from epilepsy. Awesome.
Throughout all of these events, she has continued to struggle with pain the majority of the time. She has good days, and bad days, but with nowhere near the equity that I expect. Last week, Avery had her g-tube switched to a g-j tube, so now her tube goes into her stomach and also down into her small intestines, so we can vent air out of both the stomach and small bowel. I have been able to drain the g-tube more effectively and get air out of the intestines too, which is helping a little bit. We are grasping at straws, but I know we have to try everything we can to improve the quality of her life. She was missing 1-3 days of school per week last school year which really impacted her learning. She went from the general education classroom with pullouts to special education two hours per day, to being in the special ed classroom full time this school year. She is still missing quite a bit of school between appointments and procedures and her not feeling well, but we feel she will do better in this setting where they can go at the pace Avery needs. I can already see progress with her learning, so I am hopeful that she will be able to move to the general ed classroom this school year. All-in-all, there has been a lot going on, but not much has changed. I had a long conversation with one of her doctors a couple weeks ago and she hit the nail on the head. She said, “It is one thing to have to deal with a bag, and tube, and central line, but to have all this and still be miserable is awful.” She echoed back to me what I have been trying to get across to her team for the last year. At least I know we are being heard and I hope this will motivate her doctors to find other ways to improve her life.
Living with brAVERY 
😘. I love your posts.
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