Tuesday, July 2, 2013

Part One: Liam's First Birthday, ER stay


To all my readers, friends and family: These last couple of weeks have been an emotional time. Two weeks before Liam's first birthday, I started experiencing extreme swelling in my legs. I went to the doctor on Sunday and got blood work on Monday. By Thursday, June 20th, the swelling was so bad that it hurt to walk and I insisted on the doctor calling me back regarding my results. I was also concerned because I had gained close to 20lbs in two weeks. My husband and I were sitting down discussing dinner when I got a call back from the nurse. She told me that the doctor had looked over my blood work and that I was to go to head to the ER that very night. I was in total shock.

I went back and forth with my husband, giving pros and cons of going. Besides the swelling, I felt FINE. We instead decided to head over to the doctors office to get more details. We packed up Liam and headed out the door. I really didn't think I would be spending the next 18 hours in the ER. Five minutes down the road, we got to the doctors office and I immediately saw the nurse who had called. She told me that my kidney numbers were abnormal and that my doctor was pretty adamant about me going to the hospital. So off to the hospital we went. I checked into the ER (poor Liam didn't have a diaper bag) and we spent the next 18 hours waiting for answers. That was the first night away from my baby in almost 1 whole year. It sucked. Steve had gone home with Liam to get him diapers, food and my breast pump. Due to the sanitary conditions of the ER, I had decided to pump and dump.  We decided that the ER was no place for Liam that night and so Steve went back home. He was in for a very long night of bottle feeding (my little nursling still nursed 2-3 during the night).

More blood was taken and at 1:30am I was visited by a doctor who was explained to me what was happening to my kidneys (he even drew me pictures). Basically, they were sick and dumping out insane amounts of protein into my urine. My osmotic balance was all out of whack, hence the swelling. I finally got admitted to a room later the next day and was able to see a kidney specialist. I was told that I was not allowed to see an actual specialist until I was in a proper room.

Thankfully the hospital has free wifi and so I was able to facetime with my baby, tell him a story and talk to all my family during the wait. When the doctor finally came in, Steve (husband) was there and so we all sat down to chat. He started asking me questions about the swelling and then he looked at my face. He asked, "How long have you had that rash on your nose?" I told him about a month and that I thought it was either sunburn or healing poison ivy. He assured me that if it was either, it would have healed by now and then adds "See, you ask the right questions, you get the right answers". Then he asked if I had any joint pain. I told him, yes all the time. Sometimes it hurts so bad, I can't walk or even hold my son, but then it just goes away. I told him I thought it was due to my son being so heavy. The doctor just starts nodding.  I couldn't believe this was all connected. The doctor told me that my blood count was low and that I was anemic. He then drops the bomb.... we are about 90% sure you have Lupus.

LUPUS!? I can't have Lupus. Even my husband blurts out, "It's never Lupus" from a tell tale "House" quote. This was Friday, June 22nd. The kidney doctor wanted me to stay in the hospital till Tuesday for a kidney biopsy (which ended up getting moved to Wednesday) to make sure it was Lupus but I wanted out that very day. He "compromised" and gave me a giant private room so I could pump in peace. He wanted to monitor my kidneys and make sure I wasn't getting worse by the minute. More blood was taken (every 6 hours) and  I was also sent for an ultrasound of my kidneys. By Saturday afternoon, I was allowed to leave... for now. My mother and mother-in-law were on their way up from NJ and I was scheduled for a doctors visit Monday, June 24th.

The next couple of days flew by. After my Monday doctor visit, I was told I will have to wean my son. Not in a month, not when I was ready and not even when he was ready. I was to wean him that very next day (Tuesday, June 25th)... cold turkey. They wanted me on steroids and this would go directly into the breast milk. Not only was the nephologist telling me this, but so was my pediatrician, and my OB. That was my breaking point. This was really happening. And I cried. I didn't care that I could possibly have Lupus. I wasn't ready to break that bond with my son. One week later and I am still not ok (but I will write an entire post on my weaning experience).

I went in on Wednesday for my kidney biopsy. It was exactly one year that I was back in that hospital, in the same wing and same hospital gown. I got the biopsy done at 3pm and was discharged the next day, on Liam's birthday at 11am. The biopsy wasn't too bad but I got pretty sick on the pain medication after. I was placed on 24 hour bedrest (the worst EVER) and was monitored every 30 minutes for a couple of hours, then every hour and then every 2 hours. The kidney doctor told me that they were sending my slides down to Columbia University and that we would have results by Friday... more waiting.

I am tired and my little one will probably wake up for his bottle soon. This ends Part One.

Part two will be written shortly and will  include my final diagnosis. I plan to also write a separate post on Liam's first Birthday Party at his grandmas.