One minute you are living life as normal as possible and the next, you don't know what hit you. When I say living life as normal as possible....I literally mean normal in our sense....which means keeping Elyce away from eating gluten, dairy, soy, corn, nuts, grains, etc and giving her over 12 different supplements to help her heal her gut. That was our norm and I would take it back in a heartbeat today if I only could.
In May 2012, Elyce's albumin blood levels was very low again and we ended up admitting her to the hospital. This was our 5th visit and 4 out of the 5 visits had to do with the same issues, low albumin and malnutrition. Elyce wasn't absorbing the food she was eating, due to the inflammation of her gut. As usual, they put her on lasix to release the water she was retaining and gave her albumin to bring her levels up. The albumin is only short lived, meaning it only stays in your body for about 2 hours. This visit we knew we had to probably get her on TPN to provide her with the nutrients she needed. TPN is administered through a PICC line that goes through the large vein in her arm and extends all the way to her chest. This process of getting the PICC line in, is done under a sterile process, because of the sensitivity of it all.
Right before our 4th of July vacation, we considered removing the PICC line so that Elyce can enjoy herself and swim in the pool. We second guessed ourselves and decided to leave the PICC line in. We thought the longer we leave it in and administer the TPN, the better her albumin levels will be. We had a great vacation and Elyce was able to enjoy the pool with a PICC line cover we purchased. This was one of the few vacations that we weren't stressed. We had packed all her food, microwave, TPN, and we basically had everything in the hotel as if we were at home. Elyce normally complains about not having something each time we are on a trip, but this trip was smooth and she was happy. Never complained about anything, which made our vacation less stressful and made her happy.
On July 13, we decided to take the kids to the beach. That morning Elyce had a dentist appointment in San Diego that Shane took her to in the morning, and I decided to stay back and pack everything up and meet them there. Shane mentioned Elyce didn't sleep the night before, due to the TPN machine going off all night long. He said she wasn't happy and would be grumpy. When I seen her, she just looked tired to me and she decided she wanted to take a nap, which is not the norm for her. We thought it was due to her inability to sleep the night before. After she slept for about an hour, I decided to check her and she seemed warm to me. I later told Shane that we should probably head back home. Once we got home, her temperature was 104. I quickly gave her Tylenol and soaked her in the bath. She requested I make her sopita (chicken soup)....her favorite when she isn't feeling well. Her fever was up and down, but that night her voice sounded funny and Shane woke me to tell me he was taking her to emergency. In emergency, her fever came down and they said she was dehydrated. They did a ct scan to check her lungs and everything looked fine. They put her on iv and then released her.
Saturday she woke up fine....she had energy and it seemed like she was getting better. Shane took her to Kaiser urgent care, so they can look at the PICC line. We thought maybe there was something wrong with it, since machine was going off and when they put her on the IV the night before, it seem to get blocked up. They checked her PICC line and it worked perfectly as if nothing was wrong. Her fever started creeping up again that night, but it was manageable. On Sunday, her fever stayed at around 99 and she started saying her side hurt. She had a little bit of loose stool and she felt like throwing up. We thought she had the stomach flu, which would make sense with all her symptoms. Sunday night her voice seemed hoarse and I told Shane that that can't be normal. It was late then, so we decided I would take her to Kaiser in the morning on Monday.
By Monday morning, Elyce was complaining about pain in her side stomach and her legs. Her voice was the same and she was urinating normal. I checked her in to emergency and they got her in right away. We all thought it was her gall bladder giving her problems and the pain she had coincided with pain you would normally get. They did a bunch of labs and put her on the IV to give her fluids. By the time 12 rolled around, she was moaning and had more pain. Her urine at that time was super yellow. They connected her to antibiotics and the doctor said he can give her morphine for the pain. In between that time, they did some x-rays and then decided to do the nuclear scan that can really tell us if it was her gall bladder. This scan took about an hour and trying to keep her calm while having some pain was unbearable for me. We finally made it through this process. Later that day the ER doctor said they will admit her, because her lungs looked cloudy and it looked like she had pneumonia. Her nuclear test came back inconclusive. They decided to wait another hour and take more x-rays to see if the dye went through. At this point they seen inflammation around the gall bladder and it looked like her bile duct had something. Further testing would tell us more.
Monday night, Shane finally arrived and they moved her to ICU. The pain seemed to be getting worse and they had to keep increasing her morphine dose. They also put her on oxygen, which she hated and kept wanting to take it off.
In all the hospitals stays, Shane will always stay the night with her. Elyce always asks me to stay instead, but I've always been such a wimp and I don't help the situation, because Elyce can sense when I'm going to loose it. So that night I snuck out so she didn't see me leave. Little did I know that was going to be the last time I seen her alive........
Tuesday morning I got up and went into work for a few hours. I checked in with Shane and he basically said she was the same. The pain had finally gone away with the high dose of medicine and she was sleeping. The plan for that morning was for me to get some work done and head to hospital around noon to relieve Shane. Right before I was heading out, I received a call from Randy (Shane's cousin) starting to explain that they had to do something to Elyce. I didn't understand him, because I completely freaked out and asked where is Shane and to put him on the phone. Shane came on the phone and said, sweetie....I need you to stay calm. They had to intubate Elyce, because she was starting to take the oxygen off and she started turning blue. I had no idea what intubation meant.....so he explained. I was a wreck. He asked me if I needed someone to come and get me, but I said no. I told him I will get it together and drive to hospital. After about 15 minutes of crying, I got it together and drove straight to church to pray. I prayed that God gives her the strength to get through it. I prayed that if God has decided it was her time, then to please take her, but without putting her through more pain. I begged him to get her through this. The church had holy water there and I decided to bring some to Elyce.
Once I arrived to the hospital, Elyce was swollen with a tube sticking out of her mouth. How can anyone go through so much? How can any Mother stand seeing their only biological daughter in that state? I was so scared. I think I knew down deep inside that this wasn't good at all. The doctors didn't seem to be saying much at this time....just that it looked like she had a bacteria in her blood (sepsis). That same day, her kidneys started failing and they put her on a catheter and said they will start dialysis from there.
The next days were a blur. We were lucky enough to have a room with 2 twin beds, bathroom, and a sitting area in the hospital for all the days we stayed there. We tried to get sleep and tried taking supplements to help our stress levels. Every day I would go talk to her and play her favorite songs. I was too scared to stay in the room with her for a long period of time. It was just unbearable to see my daughter in that stage. On Friday morning, was the day her eyes weren't dilating and her oxygen levels came down.
There were plenty of signs that there was something wrong with her PICC line, but there weren't any physical signs around her line that would tell us she had bacteria. Her PICC dressings were changed weekly and no signs of anything being wrong. Just like that.....one day you are living and the next day your daughter is fighting for her life. All this, because of the TPN that was supposed to be helping her by providing the nutrients her little body needed. It was right there.....but how did we know something like this could have happened. Nobody said this was a possibility....only thing they stressed was to look for irritability around the PICC line. How can we not want to blame ourselves for not having that PICC line removed? How?
Cristina I know its harder said than done but you can't blame yourselves for something that you thought was right. The same thing happened to my grandmother. She had lung cancer but actually died of sepsis as well. Same scenario, they put some kind of tube in her lung to drain the fluids from her lungs on a daily basis, and we worried more about her getting pneumonia than thinking of possible infection. She had a fever and the ED department at the hospital told her nothing was wrong and that she cannot keep coming to the hospital if nothing is wrong! ! The next day she complained again of not feeling well so my cousin called ambulance and brought her to another hospital where they discovered the bacteria in her blood. Now we can try to put blame on ourselves or others but when it comes down to it, it is God calling our sweet Angels home. I was in the airport alone on my way to Seattle where she was, and I was on the phone listening to her take her last breath! ! I was beyond disbelief and devistation, but in my heart I knew my worst fear had just become a reality. No one could help me understand why at that point. So I do understand why u r questioning yourself, but please don't do that to yourself, you and Shane did everything right. Only in time you will have peace with yourselves. I'm always here to talk and listen to you. My grandmother came to me in my dreams constantly and that brought me more comfort than you can imagine. Talk to Elyce because she IS still with you! Xoxoxo
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