2011: Our Background Story

Our background story: 2011

Here I will give you a little of our backstory. 2011 was our most eventful year so I'll start there.

One fateful night in early January 2011, our world changed. Our baby Liam had been healthy his entire first year. A couple rashes here, a cold there, nothing major. But one night in January, as we were anticipating his first belated birthday party (his birthday was the previous December 30) just a couple days later, he started vomiting. Just like his mom, this kid is not a puker. But what was so different about this vomiting was that he turned PAPER white and looked as if he were dizzy. We rushed him to the ER and the doctor dismissed us and sent us home. The next day we noticed he had basically stopped drinking, soon his lips were dry, he wasn't crying tears, and he started getting fevers. Within the next three days, we had been to the pediatrician who had also dismissed us, to the ER again for fluids (it took 9 tries to get an IV into him), and now we were there for a third time and this time we meant business. They admitted us that night.

Up until that moment, I had struggled with post-partum depression. But suddenly nothing seemed to matter but Liam's health. I could see that this was serious. It was time to step up. In an instant, I finally felt like I could be the mother he needed. In the hospital, his fevers danced around 103.5 to 104 and wouldn't come down with anything. They did test after test. I kept pushing for answers and the stress caused me to vomit in the hospital bathroom on several occasions. I hid this from the nurses so they wouldn't send me home. I didn't want to be away from my baby. My husband Jon took the week off to be with us much to his company's ire. The pediatrician tried to send him home, but we knew that he wasn't well enough to come home and that we didn't have answers yet. So we fired his pediatrician on the spot and asked for a patient advocate. They found us a hospitalist to take over his care while we were in the hospital. Firing his pediatrician - and I don't think I'm being overly dramatic here - may have saved his life. At the very least, it saved his kidney.

It took 6 days for them to come to the conclusion that it was a kidney infection. Antibiotics were given and he began to feel better. Soon we were coming back to the hospital - but only for an hour - to get a kidney ultrasound. His new pediatrician told us that it wasn't good news, that he had hydronephrosis, meaning that his kidney was filled with fluid. We saw Liam's first urologist who ran some very uncomfortable tests (VCUG and MAG-3) during which we held Liam's little hand while he screamed until his face turned blue. It was horrendous, but not as horrendous as it would become. It turned out that he had grade 4-5 reflux on his left kidney which needed surgical repair. The function in his left kidney was low and could become worse if we didn't do something. We went to a new urologist for a second opinion and she felt that he may have an obstruction as well as reflux, so she told us that when she did his surgery, she'd start with a scope to see. If he had both, he'd need to come in for a second surgery.

On the day of his first (yes, I said first) urinary surgery, I was a wreck. I paced for hours in agony. Seeing him go under anesthesia and cry until he passed out  was excruciating. I cried a silent cry in the waiting room. This was the waiting room where we found out that my dad died in 2004. To say it was a difficult wait is a massive understatement! While it turned out to be a successful (for the time being) surgery, the urologist told us that he did indeed have a blockage, so he'd need a second surgery. 

Six weeks later, he had his second urinary surgery. They gave him a spinal block for this surgery and he woke up wanting to play! In the playroom, just hours after anesthesia, he tried to stand up and play, but his legs wouldn't work. It was the sweetest, saddest, most uplifting sight I had ever seen. Thus began our little hero's journey to overcome any obstacle thrown his way. 

Unfortunately, that year, 2011, had been the most difficult year of our lives and it didn't end there.

In June, he started having food allergy issues, causing him to break out into hives all over his body and vomiting a few times. We started allergy testing and the list of his food allergies was a mile long. We adjusted his diet, but sometimes - as 1 year olds do - he got into things he shouldn't have. 

In August, all hell broke loose. Jon lost his health insurance and as luck would have it, everything possible happened that month. First Liam had an allergic reaction that led to him needing an epi pen and an ER visit. Then I had an allergic reaction which led to me needing an epi pen and an ER visit! 

The same month, Liam was at daycare when they called me. They said that he was shaking and crying. I rushed him to the St. Clare's ER. They listened to his symptoms, glanced at him, and pronounced that he had had a seizure. When we got home, I put Liam down to stand and he couldn't stand! He lifted one leg up and refused to put weight on it. We rushed him to Morristown Medical Center's ER and the doctor swiftly figured out that Liam had broken his leg! X-rays confirmed it. How the first ER missed that I'll never know. We were sent to an orthopedist - without insurance. 

The orthopedist wouldn't take a payment plan and we had to borrow from family members to afford a boot. Ultimately the boot didn't work at all and caused him huge amounts of pain. The orthopedist refused to see us again for a cast without payment, so we went to the ER to have him fitted for a cast. At least then we could do a payment plan. I've always hated the idea of using the ER for a non-emergency, but you do what you have to do.

Jon got a new job and new health insurance. About six weeks later, the cast was taken off and Liam started walking again. He quickly returned to a normal walk. But one day my mom, Liam, and I went for a walk and on the way home, he started walking with a funny gait. It was a pronounced "drunken sailor walk" - the term fits it so accurately, I must use it. He looked like he was absolutely drunk. We rushed him to the ER and......... it was gone. He was walking like normal. I couldn't believe it.

His pediatrician suggested we see a neurologist, so we did. Pompous as the man was, he ordered a full round of testing. Everything came back normal, of course, as we soon came to expect when we had testing done. Bittersweet is the negative test because you learn it isn't something awful, but you are left to wonder: what is it?? By this time, he had had quite a few episodes of what the doctor termed "ataxia". Ataxia is a loss of balance and coordination and can result in this "drunken sailor walk". This may have caused him to break his leg a couple of months earlier. But we will never know for sure.

In early October, Liam had another kidney infection. I pushed the urologist for a VCUG to see if his reflux was back. The urologist refused and told me, "Most parents don't want to put their children through this," but I fought back and she ordered the VCUG. And thank goodness I did as his reflux was back! Another surgery in which they would go up through his urethra was planned for mid November. 

Also in October Liam started getting staring episodes which we felt were absence seizures. In early November, he had his first in-hospital 48 hour EEG. It was right after a freak snowstorm in which many trees fell over, one falling into our house. We didn't have electricity for three days before the EEG. The EEG went well,it was clear, and we were left scratching our heads over his staring episodes. He also had his first MRI, in which the only findings were a very small arachnoid cyst which was benign. We still didn't have any idea what was causing his episodes of ataxia. The neurologist felt it was a genetic disorder called (accurately enough) Episodic Ataxia. We wanted to rule more things out, just to be sure, but it stopped there with that doctor. He was convinced and that's all that mattered to him.

In mid-November, Liam had his third and final (to date) urinary surgery. This time Jon had to go to work so I went alone with my mom. Let me tell you: it never gets easier. It just doesn't. He got through it well, but by this time, he had become traumatized by catherters. After the surgery, he had a 1.5 month long low fever and infection that we threw three types of antibiotics at and finally the urologist gave up on us. She curtly told me that her other patients needed her and we had taken up too much of her time. We would find another urologist the next year. Luckily his fevers finally subsided. 

Did I mention that during all of this, his language had gone from 30 words to 12? It was a marked difference, enough so that we called the state program Early Intervention. They tested his speech, gross motor skills, and fine motor skills and determined that he was pretty severely delayed and required physical therapy and speech therapy (occupational therapy was added later). 

And that concluded 2011. Some parts I hurried through and for that I apologize. I could write a short book on just that year, but I won't bore you with more details. Within the next couple of days, I'll write more on our backstory as well as our daily adventures!

Liam today at 5 1/2 years old!