Written by: Mandy Hill
If you missed part I, you can catch up HERE.
A few months later we headed to London to meet with Sophia’s urologist…..
We instantly felt confident that this specialist was going to seek the best options for our daughter. At three months of age, Sophia was started on a prophylactic dose of Macrobid, a medicine used to treat urinary tract infections (UTI’s). She would remain on this medication for one year.
I mentioned in my previous post that Sophia was sent home with an apnea monitor. This monitor was a very good indicator of infections. Sophia would begin desating, which was her body’s way of letting us know she was fighting another infection. She never had a fever, and realistically, how was she to tell us if she was going more frequently (in diapers), or if she was having any pain?! We were thankful for blessing the monitor became.
In April 2010, when Sophia was nearing the four month mark we decided to head home to Nova Scotia to surprise our family. Just three days after our arrival at my parents home, the apnea monitor started going crazy. We brought her to the children’s hospital in Halifax where she was again, admitted, for three days with an infection. More pokes, more tests, and unfortunately a pretty big haircut (for an IV in her head)!
After returning to Ontario, her specialist prescribed amoxicillin for her infection. This was the first time she would be on this particular antibiotic. We were away at a youth conference when she took her first dose and we learned that she was allergic to the medication. Another trip to the ER, this time in Waterloo, Ontario, with a swollen face/neck and a body full of hives.
We were starting to think our little princess was on a hospital tour.
Throughout the next few years Sophia continued on various prophylactic medication’s, changing annually or if an infection cropped up. In just three and a half years Sophia had incurred a whopping 19 UTI’s!
In May of 2013, her specialist decided that she would need a surgery to correct her condition and stop those frequent infections (this surgery was called a bilateral ureter re-implantation). He told us he would be scheduling it between 6 months and 1 year’s time.
In August 2013, Sophia was already being treated for her second infection since her urology appointment the previous May. Her urologist was informed, and given the circumstances he bumped her surgery up, with a scheduled surgery date of Friday November 15, 2013.
On Thursday November 14, Sophia, my husband and I packed up our car an headed to London’s Ronald McDonald house. Some family friends had agreed to move into our home and care for our boys while we gave our full attention to Sophia.
After dinner at Swiss Chalet (her choice) we made our way to Ronald McDonald house where we were very warmly greeted. After checking in, Sophia was taken to a HUGE room made over to look like a submarine underwater. She helped the manager pick several keys until she was able to unlock the door to the ship. Inside was every child’s dream. Shelving from floor to ceiling with every toy imaginable. The manager told her she could pick one of whatever she wanted. Without wasting anytime, Sophia marched right into the back where the wall was lined with Barbies of every shape and size and chose the pink-est one! We settled her into bed for the night and that barbie never left her side.
Early the next morning we brought Sophia for pre-op and she was dressed for her surgery. The nurse that registered her was absolutely incredible with Sophia. Soon after, we were called and I carried her in to the OR where I was able to hug her and hold her hand until she was completely under the anesthetic. Now it was time to wait.
About 6 hours later, Sophia’s urologist came and found us to inform us that her surgery was indeed successful! Praise God! He could foresee no complications, and told us we would be in hospital 3-5 days for recovery. About an hour after that we were called to the recovery room, where were able to see Sophia for the first time post-surgery.
Sophia did not wake for several hours after surgery, but when she did, she was a little fireball! She let us know she was in no mood for this hospital stuff and she wanted to leave NOW. Our nurse told us that she could be a little irritable from the anesthetic, but I don’t think she was prepared for our strong-willed girl. Sophia insisted that she could pee on the toilet, so with the nurses help we assisted her to the bathroom (she still had a catheter at this point). With no luck in the washroom, we were able to settle her back to sleep in her bed.
It was day two post-surgery that things began to decline. She had developed a cold, which had quickly settled into her lungs (pneumonia). She was given oxygen and we were moved into a private room where we could be kept in isolation. She was also diagnosed with a UTI (they took a sample at the time of her surgery and the results were now back) so she was treated with antibiotics for the pneumonia and the UTI, and kept under close watch.
The third day, they removed the catheter and we began the ‘pee mission’. All sorts of incentives were given to Sophia to help her pee, but to no avail. She continued to remain uncharacteristically quiet during this time, and as time passed, she steadily slid into silence.
By day 5, she had yet to urinate. She was unimaginably edematous (swollen), especially throughout her midsection, and the doctor was concerned that she was full of stool, impeding her ability to urinate. She was given a total of four suppositories, two fleet enemas and a soap suds enema before anything passed and even then, it wasn’t much. The doctor called in the paediatrician at this point and decided to take a different plan of action and concentrate on helping her pee. The nurses were given orders to hang IV boluses (large amounts of fluid) often to aide in her mission to pee; again, to no avail.
We continued to watch our precious daughter decline. The nurses began to weigh her several times a day and she had gained ELEVEN pounds of fluid in just five days. Her body was morphing in disturbing ways as she continued to swell. Finally, on the 7th day a nuclear imagining procedure was scheduled and it was here that we learned Sophia’s bladder had perforated. The specialist inserted a catheter after the completion of this procedure and he hoped that this would drain the fluid (we now know is not only urine, but INFECTED urine) and that over time, the hole in her bladder would heal. If no urine drained in 12 hours they would open her wide, and surgically repair the hole.
This mama began to pray. Pray hard!
It was six loooooong hours, but slowly urine began to drip into the bag. In the first hour about 30 mls had accumulated, which was far from the end, but an absolute answer to prayer! After that first hour and MANY prayers from family and friends all over the world, that bag began to flood. Overnight, a total of four litres (or one gallon) fell. Thank you, Jesus.
Once the urine began to drain the specialist decided that he would leave the catheter in for 10-14 days in hopes that that hole would heal itself. If not, surgery was imminent. She was also being treated for sepsis (because of the infected urine being all over) with a very high dose antibiotic called vancomycin.
Slowly, over the next several days we caught a glimpse here and there of the daughter we knew. A little smile here, a little of her personality there. She was assigned a ‘special friend’ at the hospital named ‘Kyna’. Kyna’s job was simply to be her friend. She would bring in games, movies, and toys upon Sophia’s request; and she made her laugh often. I was so thankful for their unique friendship; it served as a relief from the many negative things going on all around us medically and physically.
She was given physiotherapy to re-learn how to walk after such a long stint in bed and noticeably atrophied muscles. She ate very little and desired drinking even less, until one day she asked for an eggo waffle and a brownie. For several days eggo waffles is all she ate (several at a time even), but we were thankful nonetheless that her appetite was returning.
After twenty-two long and lonely days, many ups and downs, and even the celebration of our son Ben’s 5th birthday at the Ronald McDonald house as a family; we were finally able to come home to Essex. Sophia was still very weak initially, but she bounced back quickly after her return.
We celebrated Christmas with so very much to be thankful for; especially the fact that we were all together, under one roof. Thankful also for the life of our beautiful daughter; a life that just weeks before was in critical condition.
Fast forward to Sophia’s 4th birthday party which was delayed until January 4th after her extended hospital stay. Sophia was complaining of pain with urination and had started with a high fever. Immediately following her party my husband brought her to the ER where another UTI was confirmed. She was given IV antibiotics and sent home with a saline lock with 5 days of IV treatments scheduled the following week. This was very concerning to us because we believed the surgery was a success.
A couple of tests were lined up over the coming months to monitor a condition called hydronephrosis (swollen kidneys). Every test would show moderate to severe hydronephrosis, not even a slow progression. She was steadily maintaining moderate to severe hydronephrosis. We were told that if at the six month post-surgery mark she was still experiencing this condition, another surgery would be needed.
We began to pray; and we asked many to pray along with us.
In May 2014, at the six month post-surgery follow up appointment in London, Sophia’s specialist ordered one final test to measure this condition. A good friend of mine travelled with us to help me with our two year old, also allowing me to be with Sophia during the testing.
Have you ever prayed so hard for a miracle to happen, and then when that miracle did; you were shocked? This is exactly how it was for me when we sat in that urologist’s office, and he read the report to us.
“Sophia’s hydronephrosis is showing at 0% today.” He looked up and smiled a goofy grin, “She’s great!” He said.
After a few moments of pure shock, I asked “Are you saying, she’s fine. Like, there’s NO more swelling?!” The friend that was with us began to cry and shouted “PRAISE THE LORD!!! PRAISE THE LORD!”
I honestly couldn’t believe my ears; our baby was healed!
To see Sophia today, other than the scars from her surgery, you would not know all she has been through. The days were long, the days were tough, and I worried way more than I should have; but God was so faithful and so good to us through every moment. He grew me in ways that I could not have imagined. Not for a moment, did he leave us. He was constant in his supply of peace and grace.
We give Him ALL the glory.