2 years ago on Thanksgiving, Adam , 6 months old, went to the emergency room and received an emergency tracheotomy. Here's the story...
Okay, so he was already premature, spent 100 days in the NICU and came home on O2. However, he ate well and was gaining weight. He was home for almost 3 months and I returned to work. He was off his oxygen and although he still wore a monitor when he was sleeping, he was a regular baby, slightly small. But normal.
The week of Thanksgiving, he wasn't right. He wasn't eating as much and started to cry sometimes and refuse to take the bottle. His breathing seemed noisy to me. I took him to the pediatrician. His pediatrician said that his breathing seemed fine- his chest was clear and he probably just has a smaller airway because everything is smaller in him, and he had a cold.
I made 2 appointments for the following week. One with the pulmonologist and the other one with the gastointerologist. I felt something was wrong. We did not make it to those appointments.
Thanksgiving day, he wasn't eating and was clearly sick with what seemed like a cold. He was cranky and breathing was noisy- like a slight snore. His oxygen was fine. We have a pulse ox monitor and hooked him up and he was at 98% with his oxygen levels. So we were watching to see how much he would drink or if he would get dehydrated. Thanksgiving was at my house and there were people over and maybe it was too exciting for him and that's why he wasn't eating and was cranky.
Everyone left, the kids were asleep and Adam was hooked up to his monitor. No problems on the monitor. He was hooked up to his pulse ox. No problems. But, when we lifted his shirt to change him, we noticed that he was working too hard to keep his level at 98%. His sides were really going in as he was taking breaths (stridor). We hooked up our emergency tank and gave him some oxygen and decided we better take him to the emergency room.
When we got there, the initial diagnosis was Croup. They said that we are most likely in the beginning stage and due to his BPD and underdeveloped lungs, it could be bad. Also his airway could be smaller than most, due to his prematurity and with a cold, it is enlarged and swollen. They said that it is usually over in 24-48 hours and that they would admit him.
We were okay. We made some phone calls. Had Matthew taken care of and we were going to be fine.
It was not croup. That night and next day, Adam was bad. He needed the therapist to come in frequently and was pretty much getting nebulizer treatments constantly. He was put in the PICU. He was on a high level of oxygen and would sometimes bottom out and they would need to come in and "bag "him. They did this several times in the first 24 hours. The doctor said that it was not croup because he should be improving and he's getting worse. All blood tests were fine. Chest xrays were fine. I was saying to them that it looked like he was drowning, like he is fighting too hard to breathe.
We would take turns crying. It was so hard to watch them come in and save him over and over again. They made the decision to scope his airway, but it was not clear images and they thought that it looked like a cyst or a swollen airway, but they could not be certain and would only know if he went under anethesthia in the operating room.
Surgeons came in and explained quickly risks and we signed a bunch of forms. I wasn't really thinking clearly. I remember them telling us that they would give him a tracheostomy and I was confused about it. I just asked "will he have it forever?" They said no, but we weren't in a position to weigh options or think about it. There wasn't that kind of time. Phil was angry. He wanted to hit people and there was this feeling of helplessness and why can't anyone tell us what is wrong with him. They could not tell us until they looked and they could not look until he was intubated and under anethesia and they felt that a trach was inevitable.
The head doctor was very kind and reassured us. I asked for a priest and a nun came to our bedside and prayed with me. I remember me holding and singing to Adam and right before they took him into the Operating room, I remember reciting to him the poem "From Mother to Son" by Langston Hughes. I was sort of stern with Adam with my voice demanding that he not quit, do not sit down, do not rest, don't you dare.
Phil and I were a mess during this time. We would cry and felt so alone and frustrated. Just before the trach, I remember the head doctor coming in and needing to bag Adam. I was crying and felt that my son was going to die right then and the doctor said to me. He's not going to die. I can do this all day. We are waiting for the surgeons, but I could trach him right now, if I had to.
I've never been more scared then when Adam was in surgery. We waited and then the 2 ents came out and we went into a room and spoke to them. They explained to us that what they found when they went in was a blocked airway. They gave him a tracheotomy. Just above the trach, there appeared to be cysts, but they could not be sure. Their best guess was that when he was intubated at birth, there was friction in the airway and a cyst formed. The recent cold brought on fluid to fill the area and the cyst gre over time. The cold made the airway swollen and he most likely had a smaller airway to begin with due to his prematurity. They said we were lucky. He was lucky to have us.
Now that he was safe and alive and breathing, we had the questions. What did this mean? How long? How can we fix it? They postponed those answers and left us with the feeling that he could lose the trach when the airway was fixed and the airway could not be made larger or cysts removed until he was bigger. He needed to grow and gain weight. It could be a year, 2 years, 3 years. They were unsure, but felt it would not be there forever.
When he returned to the room. I cried, He looked dead. They made him paralyzed and in a sleep state for several days so it could heal. It was hard to stay there with him like that. It was not him. The bloody trach scared me. I went from knowing what to do, to being completely unable to take care of my own son. I was depressed and devastated.
I remember a nurse telling me that I could go on medication. That this is difficult.
I was NOT going to take pills- My grandmother survived the Holocaust. This is not the Holocaust and it's okay to be sad. This was a sad thing. I did not want to mask the sadness. I wanted to feel. I feel like that is for people who are sad for no reason, people who have illnesses that they can't explain, for people who can't get through their day. I was not going to take medicine to get through my day. I was going to be sad.
They eventually took Adam out of his coma state- a few days later. And once Adam was a bit better and stronger they moved us out of the PICU to another hospital place called Children's Specialized. There we learned how to care for him, change his trach, feed him, bathe him, secure the private duty nursing, and medical supplies we would need, and the therapies at our home.
We spent Thanksgiving, Christmas and New Years in the hospital. He was hospitalized for just about 10 weeks, total. We NEVER left him alone, EVER. Me, Phil, my mom, my cousin or my mother in law were there 100% of the time. Day and night. We had shifts, we would sleep in the chair, we would leave and go right to work, shower there, etc.
Thank goodness we did. Many times, meds were wrong, doctors needed to be paged, orders clarified, therapists paged. Adam had a roomate, another baby, who died one night that my mom was staying there. She was greatful that I sent her there that night and It wasn't me. I think it still haunts her, saddens her the image of Aaron's mom holding her son for the last time. I still cry if I think about all the sadness in the hospital.
That all happened 2 years ago on Thanksgiving.
We got more opinions and went to CHOP where they removed his cysts over several surgeries. He got his trach out just after his 2nd birthday. The trach made him stop eating. He has a feeding tube even today. The medical issues caused delays in development. He gets therapies and is "disabled". We are thankful. Thankful for everything.
Enjoy your day and be thankful for all you have.
Happy Thanksgiving to you.
6 years with Asha
11 months ago