Tuesday, January 31, 2017

How My Life Got Flipped Turned Upside Down...

I thought we would get pregnant, have a normal ho-hum pregnancy like all the others and deliver our fourth and final child. All would be right with the world...until it wasn't.
This pregnancy has been plagued with problems and while baby girl is still happy and healthy I can't say it's been easy. Intense sickness that still shows up more often than I'd like. High AFP results which scared me beyond belief that something was wrong with her spine or neurological system. Even with the doctors assurance she was ok I still wonder and worry all the time. Finding placental abnormalities that can't be explained and need monitoring. The biggest most life changing thing thus far though is something I never even imagined could happen to me.

I woke up Friday morning with an ache in my right side, I suspected a UTI was again forming and chalked it up to that. I haven't had a UTI in almost a decade but this pregnancy I've already had one and figured this was just going to be a "thing" now. As the day went on the pain increased, leading to spasms which almost brought me to the floor. I finished up my shift at work and drove home [against the wishes of my husband who had been insisting I go to the ER at work all day]. I got home, we ate dinner and began watching a tv show before bed. Then it hit, the spasms came with incredible force and frequency. They got to the point where I was in tears, rolling around and unable to form a coherent sentence really. The pain was 10 times worse than the birth of any of the kids. Finally after I figured out this problem was not going away I finally agreed to go to the hospital. We arrived at the ER and were immediately sent to OB/L&D triage. They put the monitors on and I writhed around in agony trying not to let on how much pain I was really in. I apparently fooled nobody. They gave me he first dose of pain medication. This was a shot to my upper thigh, I hate needles and hate IM shots the most. It hurt like hell and didn't touch my pain. The doctor finally ordered an IV with fluids and some different pain medication. This finally eased things up, I was in pain (a lot of it) but less than before. They scanned my kidney with an ultrasound and saw there was a lot of urine built up in it and it was pretty angry. No stones though. Next was an IVP or Intravenous Pyelogram. Basically they injected some fancy dye in my IV and took three xrays of my belly. It showed my right kidney was swollen, irritated and there was a 100% blockage to my right ureter (the tube that drains urine into the bladder). They did not see a stone there either.

It was at this point the OB came to see me. She told me she would attempt to see if anybody local or in Kingman would agree to touch me. I needed this obstruction addressed sooner rather than later. If left alone and whatever that blockage is did not clear on it's own quickly... this could have potentially developed into sepsis and put my life as well as the baby's at serious risk. Of course no urologist near us wanted to mess with a 28 week pregnant lady. That's when I found out I was going to be flown to Banner Medical University Hospital in Phoenix. This all happened incredibly fast. I was then loaded into a helicopter (I have a fear of flying so this was just going splendid for me) and on my way to Phoenix. 45 minutes later I was in Banner getting checked in, more pain meds thank the Lord and being seen by a bunch of doctors. The urologist came in and explained that my ureter is blocked by one of two things: a congenital defect (his number one suspicion) or an unusual stone which is translucent on xray or ultrasound. Either way those need to be addressed with a CT scan (more radiation and we had already had enough of that) and surgery (general anesthesia is VERY risky for baby). The best option in light of this was to place a nephrostomy tube into my right kidney.

A nephrostomy tube is a catheter that is poked into the back and into the bottom of the kidney. This allows urine to drain out of the kidney and into a little bag, bypassing the blocked ureter. I then settled into my hospital room and thanked my lucky stars drugs existed because that was the only thing keeping me sane at the moment. The pain was out of this world. I can't even describe it. I was scheduled for the procedure the next morning. They did routine monitoring of baby girl and an ultrasound which was all great. They had to chase her a lot though, feisty booger. I was wheeled down to the Interventional Radiology Department about 10 that morning. I was utterly terrified. Completely scared out of my mind because I hate needles and I know what happens with a nephrostomy tube placement. Lots of needles. They had two nurses dedicated to monitoring the baby the whole time and that made me feel a lot better. The nurse in charge of my conscious sedation was awesome. She put oxygen on me and told me "I'm putting this on so I can get you gooooood and sleepy!" I could have kissed her. They gave me lots of medicine and I felt the local anesthetic in my back but only remember saying "ow, ow ow" a few times. The rest is a blur to me. Baby did wonderful the whole time, having to be chased around for her heartbeat. Apparently the sedation was not having any effect on her movement!

I came back hoping the pain would be relieved and it was....to a point. I was still hurting. Not a 10 but still pretty bad. They gave me pain medication and I was kept reasonably comfortable. When the pain medication was in effect the pain was tolerable, I was sore and ached but could manage. I needed help getting up and moving but it wasn't unbearable. Then came Saturday night and I was to be sent home the next morning so we needed to wean off the IV meds and get onto some oral stuff. That is when things got tough. I was trying my hardest to be a good patient and not ask for the meds because well I wanted out of there. The pain came back, I had exchanged a 10 for a 7 or 8. I would reluctantly take my oral medication which dulled it enough to allow me some function back. I was examined by a perinatologist again who was great. He found not one but two cysts attached to my placenta. He was not worried about them and baby girl got a clean bill of health. We were sent home that morning with instructions to return in a month to change my tube out, only take the small amount of pain medication given if absolutely needed and stick to tylenol as best as possible. The ride home was awful. Every bump and blip in the road led to me shrieking and tears on more than one occasion.

At home I found myself needing help with simple tasks like getting up, dressing myself, going to the bathroom and showering. Kenny has been super helpful in this respect. Nothing says love like holding your spouse's bag of urine for them. Seriously he's been amazing even with me being "annoyingly independent". I am not used to being vulnerable and needing help like this. The pain is terrible no matter what I do. The only thing that helps is the pain medication and I'm trying to only take that when I'm really in a fit.

This whole ordeal has been difficult for me on a number of levels. I know I needed the procedure and that tube is what is currently keeping me from becoming septic and possibly dying or losing my baby girl. That tube has essentially saved my life. For that I am grateful. On the other hand I am in so much pain I can barely function as a normal human. Just day to day tasks are difficult, walking around is exhausting and sleeping is a nightmare. I feel useless and like a huge burden both in a physical and financial sense. Ideally I'd be able to take leave and recover at home but the reality is I don't have enough time off and what time I do have I will need after the baby. Not only for baby recovery but I will need surgery very soon after she is born. Without my income we could barely survive not to mention the HUGE medical bills soon to be arriving in our mailbox. I have no choice but to work, whether in pain or not. I must get back to work right away. This of course is against just about every member of my family's wishes. The stress I am feeling over all of this is enormous and makes me frustrated, emotional, depressed, scared and hopeless. I have no idea how I will survive at work with the pain and no pain medication (due to the nature of the job I absolutely cannot work under the influence of any pain medication prescribed or not). The doctor has given me the all clear to return to work so I have no medical reason not to go back.

I am full of fear and anxiety over what is to come these next few months. I am concerned what the tube replacements will be like. I am worried this pain will never go away. I fear labor and delivery with this dang tube sticking out of me. I agonize over the idea of having surgery right after having a baby. How will I recover from surgery with a new baby at home? How on Earth will I cope with the tube and a newborn? What will life be like for me these next few months? I don't know. I have appointments and follow ups galore, close monitoring for baby and me, back and forth to Phoenix all the time. What will we do for childcare during those trips? What will I do with a newborn, three other kids and handling my own problems?

All of these questions, fears and worries float around in my brain and my heart breaks knowing I am burdening our family. I have responsibilities as a wife, a mother and nurse which I am unable to do now or they come with great pain and difficulty. The only thing I can do is pray I will survive somehow and know that the tiny little baby pummeling my insides is safe and that is all that matters. Somehow, someway we will make it but I have no idea how.