So a small background on Carson. He was born quite jaundice. For those of you who don't know what that means, his body was not filtering out the bilirubin in his system as well as it should. Now most babies get over this with no medical intervention, maybe some phototherapy, but Carson was not in that group. No, his levels continued to rise days after he was born, so he was transferred to the NICU. They prepare you for a lot after delivery, but no one, and I mean no one, talks about when you have to leave the hospital without your newborn baby. I thought this was the worst day of my life, but I had no idea what was in the future. Thankfully he was in the NICU for 2 days, and even though they did not know what was wrong with him, he was eating well and gaining weight again, so he was released.
Fast forward to when he was roughly 7 weeks old. His bilirubin levels continued to climb. The concern was a condition called Biliary Atresia. Basically what that means is that bile flow from the liver to the gallbladder is blocked. This causes the bile to be trapped inside the liver, quickly causing damage and scarring of the liver cells (cirrhosis), and eventually can lead to liver failure. In order to help diagnose this, his doctors wanted to get a liver biopsy done. According to the specialist, it was a pretty routine procedure. But due to his age, he had to be completely anesthetized, so he would need a breathing tube placed and everything. We watched them take Carson away, confident that this would go smoothly, and we would have our little bundle of joy back in our arms in just a couple hrs. So Carson's father and I waited in the waiting room. We got the call from the anesthesiologist that he did great during the procedure and that he would be awake in about 30 minutes, they would come get us then. 30 minutes passed by.....
I heard something that put my stomach in my throat and a knife in my heart. Over the PA system, they called for the code team for the unit of the hospital Carson was in. There were plenty of other kids there, but I knew, deep down, that this was for him. I don't know how I knew, but I did. I looked at Carson's father, and I said that was for him. We waited longer, hoping that the anesthesiologist would come out any second, proving that Carson was okay. But we waited, and waited. One hour went by and they still hadn't come get us. I went to the reception desk and asked where my son was and what was taking so long. The look on the face of the receptionist when she contacted outback said it all. Her words "they will be out to speak with you shortly." Now I worked at a Veterinary Clinic as a receptionist, and though its not the same medical field, those are the words you use when something has not gone as planned.
I tried to keep it together.
Finally, she came out, and as she approached me I asked her if it was Carson that coded. She tried to be polite and get us outback before saying anything, but I could not take another step without knowing. She said yes.
Have you ever just lost all the breath in your lungs at once, unable to move, or speak? Unable to keep the sob coming out of you from so deep within your core that just trying to keep it together is impossible? I pray that you never have to feel that. I hope to what ever god there is out there, that you don't have to listen to someone tell you that things did not go as planned, that your son stopped breathing, that he is back in another ICU, before he's 2 months old.
She took us to him, and once again, I felt my world tip.
Picture this, one moment you are watching your little baby being taken away by the nice nurse, happy as can be, the next, you see him with tubes in his mouth, IV's in his hands and feet, and more monitors blinking and beeping that you can comprehend. I wish I could say I handled it better, that I was a stoic mom who never betrayed a thing. But I was not. I cried, and I cried hard. I cried for my child, as innocent as he was, having to go through this. I cried at how helpless I felt to him. And I cried because we were the ones who ok'd the procedure that put him there. No matter what the Dr's said, I felt responsible for this.
Now was I? No. Was Carson's Father? NO. Were the Dr's? No. This was no ones fault.
What had happened? When they woke Carson up, they pulled his breathing tube and his throat spasmed, causing it to close. He was unable to get any oxygen and his vitals started to tank, but thanks to the quick work of his medical team, they were able to re-intubate him, allowing oxygen to flow. But he was not out of the woods yet.
Clearly the goal in order to leave the hospital was to get the breathing tube removed. But how do you risk removing the tube again when thats what caused the spasm in the first place? With a lot of time and patience. Trust me when I say, those are two things you do not feel like you have when dealing with your child's medical needs. But Kyle and I waited, and watched, while our son rested in order to build up the strength he needed. Yet again, we had to leave the hospital without our son.
I don't remember how I felt during that waiting time. I know I was sad, worried, panicked, scared, angry and exhausted just because thats me. But the one thing I never thought I could be during that time was thankful. I was though. I was thankful that even though what Carson had just been through was terrible, I looked around the PICU, and knew that things could be worse, they can always get worse. I was thankful for all the amazing staff at his hospital who were able to snuggle him and watch over him during the night when we were't there. I was thankful for all the support from both my family and Kyles. And I was thankful for Kyle. He, yet again, was a pillar of strength that I could draw on. He held me those two nights while I cried and told me that Carson was strong, that he would get through this.
After two days, Carson was strong enough to try to remove the tube. SUCCESS! He was breathing on his own and his vitals were strong. He was starting to act more like our rambunctious little man, but he still needed to spend one more night in the hospital to be monitored.
The next day we got to take Carson home. When we finally got there, I stole him aside for a moment. I just held him close, right above my heart, hoping that him being that close would mend that whole that was ripped through it just 3 days before.
We still don't know what is wrong with him, they didn't take enough tissue during the biopsy to run all the tests needed. But for now, he is happy.
We are just taking it day by day, enjoying all of the amazing growth that we see from Carson. We couldn't happier at the advances he is making, we may even have an early walker on our hands! But we will continue to do blood work, go to Dr's appointments and give medicine until Carson gets where he needs to be. We told Carson when he was born we would do absolutely anything for him, and we will stand by that for the rest of our lives.
If you have ever been through anything as heart breaking as a sick child, you are not alone. It is heart breaking no matter how small the illness is. Not being able to help your child is the worst feeling. So please, share your stories below if you would like. Sometimes just getting that off your chest can help. There is no judgement, you don't have to have the worst story just to share. Maybe your story will help another mother, help calm them down while they worry about their child, help them feel not so alone, help them cope.
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