Tuesday, August 21, 2012

Summer of swimming, stones, and St. Louis

Well it's been a long summer!!! For one thing I finished up my pregnancy in 100 degree weather! Sydney Nicole was born August 10th. She was 7 lbs 14 ozs and 20inches! Looks a lot like her brother Bryant. The rest of our summer was spent swimming and going to St. Louis for Christian's kidney stone removal procedures.  We were there almost every 3 weeks. The first trip we didn't get to do anything because Christian woke up that day with a fever and then had a seziure. So we drove straight back home and ended up in the hospital for 2 days.
Then we went back and they did lithotripsy on his left kidney and that went well and those stones were broken up and passed.  Then we went for trip 3 to put a stint in his right ureter to dialate it so that they could put a scope up there to break up the stones in the left kidney and pull them out.  This was more invasive than what they did on the left kideny. So we did that and went home.  Then trip 4 was to do the procedure. That took about 3 hours and we went home that day.  This is where things took a turn for the worse.

That night we got home Christian started running 103 temps on and off thru the night. I rotated tylenol and motrin and kept in contact with his urologist that night and the next day.  He suggested we go see our pedicatirican to check out his lungs and urine for an infection. My pedicatrician was off that day but her sister is also a doctor there and so we got in to see her. Once we got there it turned out that our pedicatrician was there to see a couple of patients. So we get there and Christian is geting warmer because he is about 20 minutes overdue for his next round of tylenol. As the doctor is asking questions Christian starts having a seizure. I tell the doctor "he's having a seizure...take note of the time". I can tell by his more agressive jerking movements that this one will probably last 5 mins and I will need to give his emergency medicine that we always carry. At 4:25 it had been 5 mins and I gave the diastat. At this time my pediactrician had already been called in since she is familiar with Christian. After 1 minute the medicine did not work and I told them to call 911. This has only happened one other time to Christian. His temp was up to 105 by now. They put oxygen on him and waited for the ambulance.  The good thing is that the hospital is 2 mins down the road from the office.  Eric was already on his way to the office to help with Christian but did not know what was happening. Poor guy was greeted by the nurse to be informed before he walked in to a room with his son seizing and oxygen mask on.  I just watched and waited. In my mind i watched the time tick by each 5 minutes passing and knowing this was not good for is body and brain.  At one point I asked if it should be taking so long.

The ambulance arrived and we relayed info..seizure started at 4:20...10 mg diastat given at 4:25...uteroscopy done yesterday...stint in...do not give dextrose...
I rode in the front seat and repeated do not cry ,, do not cry....knowing when we got to the e.r i would need to give them vital info about Christian's complicated history and the diet he's on.  I just wanted the ambulance to go..to get to the hospital.  They took a couple minutes to start an i.v but gosh i just wanted them to go! So I just sat there and waited for what seemed like forever.

It's now been 20 mins of seizure...the paramedics run the gurney to the blue pod of E.R. I try to keep up at 8 mths pregnant but i'm a tad slow and figure I will get there eventually. I can't believe this is happening. About 10 people proceed to work on him. One doctor giving orders. It was like a well running machine..each person with their job. I dictated everything they needed to know to one nurse who stood behind a computer...typing away everything I said and asking questions as needed.  I stood in the corner and watched and answered questions. The clock just kept ticking by. Just breathe Robyn. All the while I kept praying that God would stop the seizure! They had also put ice bags and a fan on him to get his temp down. Eventually we hit 45 minutes of seizure activity!  I just stood there after I had given all of the information...i just stood there and watched and waited. There was nothing else for me to do.

They called his neurologist and followed protocol of giving a certain drug and certain amount at intervals..hoping that it would stop. After an hour he was still seizing! I felt like I was in a movie. How could this be happening. His heart rate stayed in the 200's. After an hour and 10 mins, the doctor warned us that they would have no choice but to give him something to shut him down which would likely include intubation if this last drug didn't work. Sometimes kids can't keep breathing on their own once they are given such powerful drugs.  And we had agreed that if that happened we would fly him to st louis childrens.  Then of course I start thinking oh no if that happens I can't fly with him because I'm 8 mths prego! Thank God the last drug worked. The jerking stopped and his heart rate came down.Oh thank you God!!!  I hate to admit it but at one point as we just waited I wondered how this day would end. Is this what happens? Will I be one of those parents? God intervened and the seizure stopped.

Christian slept for the next 2 days  due to the exhaustion from the seizure and powerful medicine given to stop the seizure...we stayed in the hospital for the next 7 days while they tried to figure out why his temp kept going up. That was the mystery. Nothing was ever found that gave us an answer as to why he kept running a fever. We all figured it may of just been his bodies reaction to the kidney procedure.  Christian did regress in areas of his motor skills but has since bounced back.

During this time we were so grateful for all prayers, meals, and well wishes.