Camdens Story

Camdens Story



               You truly never know how strong you are until you have your entire life ripped out from under you, and you have no choice but to fight. January 9th 2020 I started my day off normal, brought my two older boys to school, and headed to my monthly pregnancy appointment, I was 33 weeks and a few days pregnant and had been having a few weird symptoms; random headaches, weird vision, and just wasn’t feeling myself. I went in they weighed me, I’d lost 10lbs but didn’t think to much about it. I went on to tell my doctor about how I had been feeling etc, and she tells me we’re going to get some labs and I could go home. I kind of hesitated then told her I would be a lot more comfortable if I could go over to triage and just have them run the labs. She didn’t seem to concerned so I didn’t worry much I just wanted to be 100% sure everything was ok.
They checked me into triage and I was put in a room by myself. I had the normal blood work done and they hooked me up to monitor the baby’s heartbeat , my blood pressure the normal things they check for. As time went on I started to get anxious and a little irritated, I was starving! Finally one of the nurse practitioners came in, she sat down and instantly I could tell something was wrong, she went on to say that she wasn’t comfortable with the baby’s heart beat and she was going to order me an ultra sound. I panicked and called my fiancé told him he needed to head to Albuquerque something might be wrong with the baby. In 2017 I gave birth to our daughter still born, and now something might be wrong with our rainbow baby, I couldn’t think straight I remember looking at my aunt and telling her if something happens I’ll never be the same I can’t do this again, I can’t lose another baby.
The nurse popped back in very shortly after the nurse practitioner left , and took me for my ultra sound, if you have had an ultrasound done you know they don’t tell you anything, they barely even speak to you. So I headed back to my room and waited. I honestly couldn’t tell you how long after the doctor came in. I remember sitting there in complete shock, how could of I not known? The doctor goes on to tell me that I have little to no amniotic fluid, and my babies kidneys look slightly echogenic “meaning on the ultra sound the kidneys were bright white”. I had no clue what any of this meant I just wanted my baby to be ok. They admitted me to the hospital and we waited, and waited, everything seemed ok, no one seemed to concerned. I was told I was going to be kept in the hospital as long as possible so we could closely monitor the babies heart beat and since I had no amniotic fluid they didn’t want the baby to stress even more . I was admitted on June 9th and on Saturday January 11th at 10:11 in the morning I had a 3lb 11oz little boy, Camden John Martinez, he was beautiful.
Life’s a little blurry from here on out so bear with me, NICU life is hard I wasn’t able to hold him, I could only touch him through these two small holes on the side of a plastic box. The doctors first thought was that cam had something wrong with his kidneys, there was no amniotic fluid, I didn’t rupture or leak so there was no answer other than his kidneys weren’t working, but he was peeing? After a few days some of his labs kept coming back a little off and they decided to transfer us to a higher level hospital, I lost it, I was at the end of my rope ( so I had thought ). I couldn’t bare seeing my baby like this any longer, I hated that I couldn’t hold him, that I couldn’t just be his mom and take him home. I was discharged that same day and we headed to the next hospital, I honestly couldn’t tell you how I was functioning at this point, I was recovering from a c-section, my blood pressure was high, they couldn’t figure out was wrong with cam, and I felt like every wall was closing in on me.
We met with a few different specialists, the first one was his kidney specialist she informed us that his kidney levels were high and that more than likely someday he would need a transplant, but it would depend on were his kidney levels , decided to level out. The next specialist was for his liver, his blood labs were coming back abnormal and they were concerned because his ammonia levels were a little high, and they had also found two shunts on his liver that never fully closed. He told us he was going to call Colorado children’s hospital and on Monday we would be doing more labs. We went to have lunch and not even 20 minutes later ran back into our liver doctor he stopped us in the hallway and said Colorado was worried and may want to transfer us there they think he might have a very rare liver disease called GALD short for “gestational alloimune liver disease”. It was like being hit in the face with a ton of bricks, I had so many questions rushing through my head, I could feel myself start to get hot, and I fell apart as we walked down the hallway my fiancé held me and reassured me over and over it was going to be ok.
It was a Friday and it was the first time I was able to hold my sweet boy, it had been almost a week and I finally got to hold him skin to skin, it took everything in me not to cry the entire time, he was perfect. He was everything, if you’re a mother you know that feeling when they first put your baby in your arms it’s unexplainable. That night we were sitting next to cam about to help with his night time cares, and this woman walks over, no introduction no hello how are you, all she said was your son is being transferred to Colorado children’s hospital tonight. In that moment I couldn’t breath, I had never been so scared in my entire life, I didn’t know what to say, let alone what to do, I remember it was shift change and our night nurse whom we had never met was standing next to cam across from me, she had tears in her eyes, she could see how scared I was, she hugged me and held me while I fell to pieces. My fiancé, Dj was my rock he kept it together for the both of us, he asked the questions and made sure our boy was taken care of.
The flight crew arrived and reassured me over and over he was in the best hands he could possibly be in, I pulled myself together kissed my boy goodbye, and we headed to Colorado. It was a 6 hour drive for us, we arrived at about 5am the next day. It was so cold, it hurt, we were exhausted and just wanted to see our boy. When we got there I was so happy we had our own room and we could sleep bed side, I never had to leave his side. We met the night doctor and a few nurses and then we had to switch every single one of my milk labels and let me tell you it was so much fun. We finally finished and went to bed, I woke up to a one of the scariest moments in my entire life, I was lost, people were running everywhere, our doctor was giving orders, his blood pressure is dropping is all I could here her say, I couldn’t move all I could do was shake my fiancé, and I just sat and I prayed I prayed with every fiber in my entire body, I was screaming inside, I couldn’t help him, I felt helpless, I was watching my son decline and fast, his numbers just kept dropping and dropping, and they finally got his blood pressure back up.
My baby was in shock, he was intubated and on very high doses of blood pressure meds. We weren’t even in Colorado for 4 hours and this is what was happening. I was a mess, I couldn’t eat , I would doze off and wake up in a panic. The next few hours were filled with terrifying conversations, moments where I wanted to just lay on the floor and give up but I’d look at cam and I just knew how hard he was fighting. I couldn’t give up, he deserved every ounce of fight I had left. Colorado was now our home, we had several specialists on our team, and they were all concerned about the same thing, cam’s blood wasn’t clotting his PT/INR levels weren’t normal, and several other levels were off, he was having to get several blood transfusions a day at this point, and everything was starting to point even more towards GALD.
My baby was in liver failure how was that even possible? This disease is rare they see 0-1 cases a year, they maybe have 5 to ten years of actual research on this disease, and that terrified me. One of the ways to help with this was a double volume exchange transfusion that’s where they slowly take out your blood And slowly put new blood in. The reason for this is if cam had GALD that means he had bad anti bodies attacking his liver which is why he was in liver failure, and this procedure would help get rid of those bad anti-bodies, another way was with IVIG ( Intravenous Immunoglobulin ) this essentially is suppose to help the body from attacking itself. Our doctors decided IVIG was his best bet. Also so your not left wondering about the shunts on his liver, and his kidneys, by the time we got to Colorado his kidney levels were back to normal and they found that his shunts had actually closed.
We were moved to a room across the hall, so we could have our own bathroom, and a little more privacy, cam wasn’t officially in recovery but he was fighting and he was fighting hard, everyday was a battle, always two steps forward 3 steps back. His blood still wasn’t clotting, he was still intubated, and none of his levels were showing any improvement. Eventually we started having more good than bad days, he was finally able to be excubated, we were able to hold him and pick him up when ever we wanted, we were even able to put him in clothes for the first time. We had hope and I finally felt like we were in recovery mode.
Our two older boys were coming to visit for the first time, and this would be the first time they would be able to meet there brother. I woke up that morning, ran downstairs to get coffee so I could make it back for rounds, and when I got back up to our room I headed over to cam so I could tell him good morning like I do every morning, I started to notice he looked like he was struggling to breath almost like he was choking, he coughed and blood came out of his mouth, I yelled for the nurse and kept it together the best I possibly could, his heart rate started to drop and I started to scream, his heart rates dropping, and the nurse ran over to hit the code button, people rushed in from everywhere, they instantly started trying to get his blood pressure up, and I could hear is he’s dropping and then I hear her yell the number 37 his heart rate had dropped to 37! He was crashing, and started to pray I prayed harder than I’ve ever prayed before I wasn’t going to lose him, I couldn’t , not even 24 hours ago I was holding him no tubes no wires just him and now a nurse is running for the chest compression board and all I can remember is they got it up, after 7 tries they got him intubated and now he was also back on blood pressure meds.
A lot happened that day he had a new ART line put in to monitor his blood pressure better, he had a PIC line placed again, we also had some very scary conversations, a little later his labs came back and his ammonia levels had sky rocketed, and at this point we were being told there wasn’t much they could do. We had ran down to get some food, and when we had come back up to our room our doctor sat us down and said that the metabolic team has a drug that rids the body of ammonia and we are going to try it on cam, the down fall to this was that the drug needed the liver to be functioning to work. So we ended up giving him this drug along with a few oral medications and it worked, there was know better feeling in the world than when our nurse let us know his levels were lowering.
It had been a few days and we had some more ups and downs, his blood pressure wasn’t stable and his heart rate would drop every now and then. Cam had also been given another dose of the IVIG to help get rid of the anti bodies, and his liver still wasn’t responding. If his liver still isn’t responding or recovering than what’s next? We had so many questions and had no clue what to expect, our liver specialist finally sat us down and explained that we needed to start talking about a liver transplant, but cam was so small and for him to even get a liver for a transplant would be very hard because of his size. He looks big in pictures but he was still itty bitty, he was very fluid overloaded his weight fluctuated daily, but his dry weight was still very small.
Liver transplant was the next step, we had several meeting and calls the next 24 hours, my insurance wouldn’t let us stay at Colorado children’s for the transplant, so we were going to have to be transferred to a hospital that they had a contract through. Texas Children’s Hospital was our best choice and their transplant doctor is one of the best in the entire country, I had hope for the first time in what felt like forever. Texas children’s accepted us and they moved fast, we were transferred with in days, Dj flew with cam and I drove 15 hours to Houston Texas. We were now in a PICU and a lot of things changed and fast, Cam was put on dialysis because when he Arrived in Texas his ammonia had shot back up, and dialysis was another way to clean the ammonia out. He was sedated and sometimes on paralytics. They started his transplant evaluation immediately and we waited and waited and at first cam was “tabled’ meaning they needed a few more tests, they wanted to get a cat scan of his heart to make sure it could with stand surgery, but he was having a hard time staying stable when they would remove him off of the dialysis, he needed constant blood pressure meds, and he was still intubated so taking him down for a CT scan was terrifying and very difficult. Our first attempt didn’t go well, he ended having to be resuscitated several times. After a few days we tried again, he did better and we were able to get the scan done.
The results of this scan would determine whether or not Cam would be approved for the liver transplant. If his heart was strong enough then everything would fall into place, I’m sure you can imagine how I felt. Two days later our liver doctor comes in and brings me down to a conference room where several of our other doctors were waiting, I was terrified, I was shaking, I had absolutely no clue what they were about to tell me, my chest tightens even thinking about it. They sat me down and begun to tell me that cams arteries would not be able to with stand surgery and there was no way they would be able to do the transplant. So I sat there in complete and utter shock, there was nothing they could do, there was no way to save my child, he was to sick and there was nothing we could do.
As a parent there is know other pain that even compares to the pain we felt having to make the decisions we had to make in the next few days. We chose to spend the weekend with him, they got us a bigger bed so I could lay with him, we made keepsakes and made memories. My older two boys got to lay with Cam and cuddle him. We did everything we could to make those last moments as special as we could. We had family fly into Houston so they could say goodbye. Monday morning came fast, when I woke up I could feel it in my bones I knew what was coming and there was know way I could stop it. We gave everyone the chance to hold him one last time, and we told the doctor we were ready. I held Cam in his bed, and My fiancé sat right next to me, we held our boy as he took his last breaths and as our lives changed forever. I lost a piece of me that day, no parents, no human being should ever have to go through we went through, and my heart goes out to anyone that has felt this pain.
Camden changed lives and stole so many hearts, he gave me a voice and made me a better person, and even more.. a better mother. He was so tiny but so strong, he brought nurses and doctors into our lives who we now call family. He was a beautiful little soul and I am so blessed to be his mother. He has helped me start to advocate for other woman, he inspired me to give back and make a difference. He fought as hard as I he could and I will continue the fight for him.