Posted September 20, 2017
After going back and forth trying to decide if we were going to have a G tube placed for Rilynn instead of her NG tube taped to her face, we finally felt convinced by the doctors that it was the best option. It was described to us as a quick routine surgery the normally leads to the child going home after but in our case, would be a few days since she is on dialysis. The incision they had to make needed to heal up a little otherwise the dialysis solution would leak out.
As the day before surgery came, Zack took us up to the hospital and got us settled in before having to head back home to be to work early. He had taken up almost every bit of his vacation time with work and we expected this procedure to be easy compared to all we have been through. We agreed I’d stay alone with her and he would drive back out after work the next day and stay the weekend.
That next afternoon I watched a nurse as she walked away with Rilynn in her hospital gown that was blanketed over her little body. She was a sweet nurse with a soft voice and I tried to convince myself it was going to be over quickly. I walked away fighting back tears feeling every emotion that I once had when she was fighting to survive in the NICU. I made it to the bathroom and hid in the stall hyperventilating with fear, this trip to the operating room seemed so much harder after developing such an indescribable bond with Rilynn, she knew I wasn’t there whereas when she was just born she didn’t realize I was her safety. I felt like I was letting her down as she watched me walk away. I gathered myself and found comfort in buying her lots of toys in the giftshop and awaiting my buzzer to go off that her procedure was over.
I got an update that she had gone to sleep fine and the procedure was starting so I went to her hospital room and sat alone in the silence. Minutes later I got a text to report to the surgery waiting room and it sent shivers down my spine. Why did it come so quickly after the first text? They couldn’t have been done that soon? Is everything ok? I literally ran through the hospital to the waiting room. I handed in my buzzer and stood waiting for the surgeon to see me. Once he finally led me into a private room he calmly assured me everything was ok but Rilynn's blood pressure dropped and they wanted to move us to the intensive care unit to be monitored. He assured me she was ok, although anxious to get to her, I felt a little relief. The nurse told me what room she was going to, and I grabbed all our things and headed that way.
When I got close to Rilynns room in the ICU I began to shake. I saw familiar faces of specialists who had saved Rilynn in the NICU, I saw many of them. When you walk in to find more than 6 or 7 doctors in your child’s room you began to realize that things are NOT ok. Doctors are trained to be calm and collected as that surgeon was to me, but throughout our experiences with Rilynn, I just knew things were not ok. I tried to rush in and was stopped by a nurse asking me to wait until they had her settled. I just wanted to scream and cry. That is my child and your telling me I can’t come in when she is so very sick? I paced the hallway just staring and trying to hear any word I could. People were rushing around asking to pull up her chart and find out her normal blood pressure range. I had Rilynns daily log right with me and I thought to myself that I don’t care if these people aren’t ready for me to come in, I am coming in. So, I walked up and opened my log and said this is her normal ranges and I want to come be with her. As I walked in a nurse made room for me to stand right next to Rilynn. It was a hard sight to see as she laid there lifeless and pale. The alarms of each machine and the chatter of doctors put me right back to the times we almost lost her. The doctor explained that her blood pressure levels were critically low, a low that could be deadly. The only good thing about this scenario was that this was the same doctor who was on call when Rilynns blood pressure dropped in the NICU. She knew Rilynn's case very well and was on top of figuring out what medications worked for her last time. Rilynn was starting to wake now, her little cry was so course from the breathing tube they inserted during surgery. I just wanted to snuggle her but between all the cords and other doctors all I could do was hold her little hand as I tried to sing through my tears.
They had her on two high doses of medication and it wasn’t coming up, so the next step was to place an art line. This is very painful, they gave her a dose of pain medication and had me try to keep her held down while singing and talking to her. The most terrible thing to have to experience is holding your own child down and watching the tears and pain in their eyes and not stopping it for them. This went on and off for hours with no success in placing the line. My heart hurt more than I could ever explain, it’s so emotionally painful that I legitimately felt in pain watching her go through all this. They finally let her rest, she was absolutely exhausted from all the pain and fighting back....and I was exhausted from watching it all. We finally sat alone together as she closed her eyes and I prayed that God would take care of us, make her blood pressure come back up.
When Zack finally arrived, I lost it, I was so mad that I was left alone to endure this, but neither one of us would have guessed it to turn out this way. The rest of the night was quieter, we had an amazing nurse who took the time to really explain everything to us and reassured us that they were taking good care of Rilynn. Early into the morning I finally fell asleep after hearing her blood pressure was slowly getting better. Zack and I slept together in a chair completely exhausted and praying Rilynn would be back to normal shortly. And she did, we were back into a regular room the next day.
The cause of the blood pressure is unsure exactly. She did end up with peritonitis, which is an infection in the peritoneal cavity, but they also think it could have been caused by the anesthesia. We ended up spending 3 weeks in the hospital with the infection and trying to let her incision heal after an attempt at trying dialysis and it leaking. My fears for the next surgery have increased but I do know that every time God has come through for us. Rilynn's right here next to me as I type this, she is as happy as ever as I re live this memory bawling my eyes out. lol. I can say that because of everything we have been through we are more grateful than ever for every single day with our sweet warrior.