He Is Very Sick…
I remember when they took Zachary to the OR, Chris and I just stood in his empty room in the PICU. I was just so confused, so sad, so scared, and so exhausted.
I curled up into a chair and was able to fall asleep for a little bit.
Our nurse Eileen came back into the room and told us that she had to start to get the room ready for his return, but she wanted to show us to a parent sleep room, and we could stay there and wait for an update from the OR.
We walked down the hallway and entered this little room that had a bed, a chair and a table. No windows, no pictures on the walls.
We brought what little things we had with us; Chris’ backpack, the diaper bag I had packed the day before, and Zachary’s car seat.
I settled in the bed and tried to rest.
We didn’t know how long his surgery was going to take because we didn’t know what was wrong. We didn’t know what they were going to find, or I guess not find.
After what seemed like a lifetime, my phone rang. It was Zachary’s nurse Eileen calling, saying that the OR had called and Zachary did very well through the surgery. He was recovering, and would be heading back up to the PICU soon.
There were so many emotions in that room after that phone call. Relief. There were tears, sobs, hugs, laughs. It was complete relief. Relief that he was okay, relief that they found and fixed the problem, relief that the unknown was discovered, just relief.
Zachary’s surgeon came and knocked on the door of our parent sleeping room. We went out into the hallway and he explained to us what they found.
Zachary had another complete bowel obstruction. The scar tissue from his first repair built up and caused a complete block. His bowel had twisted and ultimately perforated in several places and completely tore in another spot. They had to remove about 30cms of his bowel because it was completely dead. The surgeon went on to say that they did not have to give him an ostomy bag, he was able to reconnect the ends of the bowel, and while the sizes of the two ends didn’t match up perfectly, the bowel was healthy and would ultimately be able to go down to size and all should work as it should.
We both hugged him, thanked him over and over again, and he said he would be checking in later.
I remember him looking exhausted, and relieved as well. And I remember he had a little blood on his nose. Zach’s blood. It’s funny what we remember…
We went to the PICU once Zachary was settled. He was still intubated, but was doing very well.
We kept holding his hands, rubbing his legs and his head, and telling him that we loved him and were so proud of him.
Again, I couldn’t hold him.
Not being able to hold your baby, to comfort your baby, to do what every cell in your body is designed to do…it quite literally breaks your heart.
The nurses taking care of Zach that night came in and were wonderful. They were so friendly and approachable. They wanted to make sure that we were okay, and all we wanted to do was make sure that Zach was okay.
One of them made a comment about his color. He was starting to look a little orange, a little jaundiced. We made a joke about Jersey shore tanning, and chalked it up to the fact that he had been sick, and didn’t really give it another thought.
Knowing that Zach was okay and was just going to sleep all night, Chris went back home to be with the boys who had been tucked into bed the night before by their mom, dad and baby brother, and woke up to Nana with no one else home.
We wanted them to know, as best as they could understand, what had happened. So Chris went home to tuck them in and be with them.
I stayed in Zach’s room until around midnight. You’re not allowed to sleep in the room if your child is intubated, so I went down the hall to the parent room, and actually passed out. I thought I would have been waking up constantly to go in and see him…but I slept all night until 7am. I felt so guilty, but I needed it. Other than some catnaps, I had been awake for over 48 hours.
I hopped out of bed, feeling so guilty about not checking on him through the night, I practically ran down the hall. I walked into his room, and his nurse Bridget was there. Bridget…what a love. We have a special place in our hearts for Bridget.
Looking at Zach, I could tell that his color didn’t improve overnight, in fact, he had become more orange. Again, I didn’t think anything of it. I kept asking about his blood pressure, and the ventilator, and the morphine drip, and the antibiotics he was on. Little did I know, I wasn’t asking the right questions.
Throughout the day the PICU doctors and surgeon started commenting about his jaundice. Did anyone in the family have any liver conditions that cause jaundice? Any family history of jaundice? We mentioned CJ almost needing to go under the lights after he was born, but that “wasn’t the same thing”.
Ultrasound came up and did one on his liver. The radiologists came up to look at it in real time, and said that there was great blood flow, and everything appeared okay. I started to sense some concern when the labs came back indicating elevated liver enzymes and an elevated and climbing bilirubin level.
They drew labs again…the bilirubin level had climbed again.
Here’s a quick WebMD explanation:
A bilirubin test measures the amount of bilirubin in a blood sample. Bilirubin is a brownish yellow substance found in bile. It is produced when the liver breaks down old red blood cells. Bilirubin is then removed from the body through the stool (feces) and gives stool its normal color.
Bilirubin circulates in the bloodstream in two forms:
They started mentioning terms like hyperbilirubinemia (too much bilirubin), and how there are levels that are too high and can start to cause kernicterus (a type of brain damage) and other serious problems.
The next thing we knew, we were signing a consent for a blood exchange transfusion. It was explained to us that because of the sepsis, Zach’s liver although looked okay and was showing it was performing, wasn’t able to filter and breakdown the blood cells because his blood was so sick. The blood transfusion would remove enough of his sick blood and replace it with healthy and clean blood, and would therefore lower his bilirubin level.
Seemed simple enough. Sounded good to us. We didn’t understand just how serious this was.
They started to prepare for the exchange transfusion. We learned that we would not be able to stay with Zach while this was happening, but they would call us and update us throughout.
So off we went again to the parent room to wait.
About two hours later we received a phone call, asking for consent for the PICC line nurse to attempt to put in a PICC line.
Of course.
Two hours after that phone call, we got the call that it was finished. They explained that his femoral line stopped allowing them to draw blood, but they were able to accomplish about 75% of the exchange transfusion, and they were happy with that.
They also told us that the PICC nurse was not successful with getting the line in after many attempts.
We were able to go back and see him.
The transfusion lasted longer than expected, because of the PICC line attempts, and when we got back there, the change of shift had just happened, and his new nurse Heather was there working very quickly to stabilize him.
He was ok. But because the PICC line placement is a sterile procedure, all of his other care stopped during that time. So Heather was racing around to get fluids into him, get his antibiotics back up and running, get his nutrition back up, and everything else that had been neglected.
I remember Heather saying that she wasn’t meaning to be rude, but she needed to get him stabilized, and she wasn’t not speaking to us on purpose.
We told her we completely understood, and just sat there and watched, and tried to make more jokes about his really bad self-tanner color.
We had no clue what was happening…
Zachary’s blood pressure was dangerously low, and while he was responding well to the fluids, they felt blood pressure meds were needed to help get him back to where he needed to be.
I just kept watching the monitor and every time it took his blood pressure, I would hold my breath as the numbers popped up on the screen. Looking back now, Heather was doing the exact same thing.
Chris left the room to make a phone call, and Zachary’s surgeon came in. He walked right over to Zachary’s warmer, and leaned over him. I remember him holding his feet. I remember the look on his face.
Still holding on to Zachary’s feet, he turned his head to look at me and simply said,
“He is very sick”.
I nodded, and said, “I know”.
But I didn’t. I didn’t know he was THAT sick. I knew he just had emergency surgery, and a blood transfusion, and that his blood pressure was low. But I didn’t know how truly sick he was.
The surgeon’s four words and the look of fear on his face, hit me like a punch to my stomach. I immediately felt ill. I had a shiver go through my body. I knew it wasn’t good.
The surgeon said those four words to me, and left the room. I sat there scared, confused, panicked, and alone with Zach.
I looked over at my baby; my hurt, sick, yet beautiful miracle baby…and thought to myself, what the hell is going on?
Chris came in at this point, and I told him what the surgeon had said. Chris looked confused and asked if the surgeon had elaborated. I told him all he said was, “he is very sick”.
My next memory is Zachary’s surgeon calling us out of his room, so we could talk right outside.
“I have been calling my colleagues around the country. I have called doctors I went to school with, I have called my mentor…no one knows what to do to help him. They all agree that what is going on with Zach, isn’t a problem that can be fixed with surgery. His liver is okay. But it just took such a hit from the sepsis”…
I went numb. I turned away. I put my head in my hands. I knew what was coming.
I heard, “blah, blah, blah, Hail Mary”. Surgery would be his Hail Mary to save him, but he knew that Zachary wouldn’t make it out of surgery if he took him.
“If this transfusion didn’t work, you need to prepare yourselves that Zachary will not get better”.
I knew what he meant. But I needed to clarify. Because how could this be happening? How is this my world right now? I looked at him and said, “so what you’re saying, is if this transfusion doesn’t work, Zachary isn’t going to make it”?
He just looked at me and lowered his eyes.
I started to shake, I couldn’t breathe. I could hardly stand. I turned around and headed for the door as fast as I could. I left the PICU and ran to the bathroom right across the hall.
I couldn’t breathe through the sobs. I fell down the wall to the floor.
Chris started to knock on the door, and told me to unlock it.
I was able to get to my feet and open the door.
He grabbed onto me and didn’t let go. He led me, practically carried me down the hallway to our room. Once inside, I sat on his lap and just cried.
Again, this man was a rock. I don’t know how. I will never know how he was able to be there for me like that. I still had a hard time catching my breath. I was trying to ask why? But not much was coming out.
I finally calmed down enough so Chris felt comfortable leaving me. I couldn’t go back to the PICU. Not yet. I needed to be alone.
Chris went back to be with Zachary, and I curled up on the bed and went to a very dark scary place. I reached out to an amazing group of women that I am honored to be a part of, and their words and prayers and good thoughts carried me through the darkest and scariest night of my life.
I am forever grateful.
Chris called at some point, and said that Zach’s surgeon would be coming in around midnight to talk.
Around 11:30pm, I summoned every ounce of strength, physical and emotional that I had, and walked back to the PICU. As I was walking, I remember thinking that I was going to go say goodbye to my son.
Chris and I were sitting with Zach and his nurse when Zach’s surgeon walked into the room.
I held my breath and just looked at him…
He sat down, looked at me, and said, “okay, so how about some good news”?
I did feel some relief….but I now had my guard up.
The most recent blood work, showed that Zach’s bilirubin level had dropped a couple of points. The transfusion had worked.
They told us that Zach was still in the deep, dark, scary woods. The next 24 hours would be critical. That bilirubin needed to keep dropping…but it was heading in the right direction.
Chris and I made our way back to our room and curled up on the bed. The nurse told us that she would come get us if we needed to go, but promised us she would get him through the night. That was a big promise.
But she did.
I remember when they took Zachary to the OR, Chris and I just stood in his empty room in the PICU. I was just so confused, so sad, so scared, and so exhausted.
I curled up into a chair and was able to fall asleep for a little bit.
Our nurse Eileen came back into the room and told us that she had to start to get the room ready for his return, but she wanted to show us to a parent sleep room, and we could stay there and wait for an update from the OR.
We walked down the hallway and entered this little room that had a bed, a chair and a table. No windows, no pictures on the walls.
We brought what little things we had with us; Chris’ backpack, the diaper bag I had packed the day before, and Zachary’s car seat.
I settled in the bed and tried to rest.
We didn’t know how long his surgery was going to take because we didn’t know what was wrong. We didn’t know what they were going to find, or I guess not find.
After what seemed like a lifetime, my phone rang. It was Zachary’s nurse Eileen calling, saying that the OR had called and Zachary did very well through the surgery. He was recovering, and would be heading back up to the PICU soon.
There were so many emotions in that room after that phone call. Relief. There were tears, sobs, hugs, laughs. It was complete relief. Relief that he was okay, relief that they found and fixed the problem, relief that the unknown was discovered, just relief.
Zachary’s surgeon came and knocked on the door of our parent sleeping room. We went out into the hallway and he explained to us what they found.
Zachary had another complete bowel obstruction. The scar tissue from his first repair built up and caused a complete block. His bowel had twisted and ultimately perforated in several places and completely tore in another spot. They had to remove about 30cms of his bowel because it was completely dead. The surgeon went on to say that they did not have to give him an ostomy bag, he was able to reconnect the ends of the bowel, and while the sizes of the two ends didn’t match up perfectly, the bowel was healthy and would ultimately be able to go down to size and all should work as it should.
We both hugged him, thanked him over and over again, and he said he would be checking in later.
I remember him looking exhausted, and relieved as well. And I remember he had a little blood on his nose. Zach’s blood. It’s funny what we remember…
We went to the PICU once Zachary was settled. He was still intubated, but was doing very well.
We kept holding his hands, rubbing his legs and his head, and telling him that we loved him and were so proud of him.
Again, I couldn’t hold him.
Not being able to hold your baby, to comfort your baby, to do what every cell in your body is designed to do…it quite literally breaks your heart.
The nurses taking care of Zach that night came in and were wonderful. They were so friendly and approachable. They wanted to make sure that we were okay, and all we wanted to do was make sure that Zach was okay.
One of them made a comment about his color. He was starting to look a little orange, a little jaundiced. We made a joke about Jersey shore tanning, and chalked it up to the fact that he had been sick, and didn’t really give it another thought.
Knowing that Zach was okay and was just going to sleep all night, Chris went back home to be with the boys who had been tucked into bed the night before by their mom, dad and baby brother, and woke up to Nana with no one else home.
We wanted them to know, as best as they could understand, what had happened. So Chris went home to tuck them in and be with them.
I stayed in Zach’s room until around midnight. You’re not allowed to sleep in the room if your child is intubated, so I went down the hall to the parent room, and actually passed out. I thought I would have been waking up constantly to go in and see him…but I slept all night until 7am. I felt so guilty, but I needed it. Other than some catnaps, I had been awake for over 48 hours.
I hopped out of bed, feeling so guilty about not checking on him through the night, I practically ran down the hall. I walked into his room, and his nurse Bridget was there. Bridget…what a love. We have a special place in our hearts for Bridget.
Looking at Zach, I could tell that his color didn’t improve overnight, in fact, he had become more orange. Again, I didn’t think anything of it. I kept asking about his blood pressure, and the ventilator, and the morphine drip, and the antibiotics he was on. Little did I know, I wasn’t asking the right questions.
Throughout the day the PICU doctors and surgeon started commenting about his jaundice. Did anyone in the family have any liver conditions that cause jaundice? Any family history of jaundice? We mentioned CJ almost needing to go under the lights after he was born, but that “wasn’t the same thing”.
Ultrasound came up and did one on his liver. The radiologists came up to look at it in real time, and said that there was great blood flow, and everything appeared okay. I started to sense some concern when the labs came back indicating elevated liver enzymes and an elevated and climbing bilirubin level.
They drew labs again…the bilirubin level had climbed again.
Here’s a quick WebMD explanation:
A bilirubin test measures the amount of bilirubin in a blood sample. Bilirubin is a brownish yellow substance found in bile. It is produced when the liver breaks down old red blood cells. Bilirubin is then removed from the body through the stool (feces) and gives stool its normal color.
Bilirubin circulates in the bloodstream in two forms:
- Indirect (or unconjugated) bilirubin. This form of bilirubin does not dissolve in water (it is insoluble). Indirect bilirubin travels through the bloodstream to the liver, where it is changed into a soluble form (direct or conjugated).
- Direct (or conjugated) bilirubin. Direct bilirubin dissolves in water (it is soluble) and is made by the liver from indirect bilirubin.
They started mentioning terms like hyperbilirubinemia (too much bilirubin), and how there are levels that are too high and can start to cause kernicterus (a type of brain damage) and other serious problems.
The next thing we knew, we were signing a consent for a blood exchange transfusion. It was explained to us that because of the sepsis, Zach’s liver although looked okay and was showing it was performing, wasn’t able to filter and breakdown the blood cells because his blood was so sick. The blood transfusion would remove enough of his sick blood and replace it with healthy and clean blood, and would therefore lower his bilirubin level.
Seemed simple enough. Sounded good to us. We didn’t understand just how serious this was.
They started to prepare for the exchange transfusion. We learned that we would not be able to stay with Zach while this was happening, but they would call us and update us throughout.
So off we went again to the parent room to wait.
About two hours later we received a phone call, asking for consent for the PICC line nurse to attempt to put in a PICC line.
Of course.
Two hours after that phone call, we got the call that it was finished. They explained that his femoral line stopped allowing them to draw blood, but they were able to accomplish about 75% of the exchange transfusion, and they were happy with that.
They also told us that the PICC nurse was not successful with getting the line in after many attempts.
We were able to go back and see him.
The transfusion lasted longer than expected, because of the PICC line attempts, and when we got back there, the change of shift had just happened, and his new nurse Heather was there working very quickly to stabilize him.
He was ok. But because the PICC line placement is a sterile procedure, all of his other care stopped during that time. So Heather was racing around to get fluids into him, get his antibiotics back up and running, get his nutrition back up, and everything else that had been neglected.
I remember Heather saying that she wasn’t meaning to be rude, but she needed to get him stabilized, and she wasn’t not speaking to us on purpose.
We told her we completely understood, and just sat there and watched, and tried to make more jokes about his really bad self-tanner color.
We had no clue what was happening…
Zachary’s blood pressure was dangerously low, and while he was responding well to the fluids, they felt blood pressure meds were needed to help get him back to where he needed to be.
I just kept watching the monitor and every time it took his blood pressure, I would hold my breath as the numbers popped up on the screen. Looking back now, Heather was doing the exact same thing.
Chris left the room to make a phone call, and Zachary’s surgeon came in. He walked right over to Zachary’s warmer, and leaned over him. I remember him holding his feet. I remember the look on his face.
Still holding on to Zachary’s feet, he turned his head to look at me and simply said,
“He is very sick”.
I nodded, and said, “I know”.
But I didn’t. I didn’t know he was THAT sick. I knew he just had emergency surgery, and a blood transfusion, and that his blood pressure was low. But I didn’t know how truly sick he was.
The surgeon’s four words and the look of fear on his face, hit me like a punch to my stomach. I immediately felt ill. I had a shiver go through my body. I knew it wasn’t good.
The surgeon said those four words to me, and left the room. I sat there scared, confused, panicked, and alone with Zach.
I looked over at my baby; my hurt, sick, yet beautiful miracle baby…and thought to myself, what the hell is going on?
Chris came in at this point, and I told him what the surgeon had said. Chris looked confused and asked if the surgeon had elaborated. I told him all he said was, “he is very sick”.
My next memory is Zachary’s surgeon calling us out of his room, so we could talk right outside.
“I have been calling my colleagues around the country. I have called doctors I went to school with, I have called my mentor…no one knows what to do to help him. They all agree that what is going on with Zach, isn’t a problem that can be fixed with surgery. His liver is okay. But it just took such a hit from the sepsis”…
I went numb. I turned away. I put my head in my hands. I knew what was coming.
I heard, “blah, blah, blah, Hail Mary”. Surgery would be his Hail Mary to save him, but he knew that Zachary wouldn’t make it out of surgery if he took him.
“If this transfusion didn’t work, you need to prepare yourselves that Zachary will not get better”.
I knew what he meant. But I needed to clarify. Because how could this be happening? How is this my world right now? I looked at him and said, “so what you’re saying, is if this transfusion doesn’t work, Zachary isn’t going to make it”?
He just looked at me and lowered his eyes.
I started to shake, I couldn’t breathe. I could hardly stand. I turned around and headed for the door as fast as I could. I left the PICU and ran to the bathroom right across the hall.
I couldn’t breathe through the sobs. I fell down the wall to the floor.
Chris started to knock on the door, and told me to unlock it.
I was able to get to my feet and open the door.
He grabbed onto me and didn’t let go. He led me, practically carried me down the hallway to our room. Once inside, I sat on his lap and just cried.
Again, this man was a rock. I don’t know how. I will never know how he was able to be there for me like that. I still had a hard time catching my breath. I was trying to ask why? But not much was coming out.
I finally calmed down enough so Chris felt comfortable leaving me. I couldn’t go back to the PICU. Not yet. I needed to be alone.
Chris went back to be with Zachary, and I curled up on the bed and went to a very dark scary place. I reached out to an amazing group of women that I am honored to be a part of, and their words and prayers and good thoughts carried me through the darkest and scariest night of my life.
I am forever grateful.
Chris called at some point, and said that Zach’s surgeon would be coming in around midnight to talk.
Around 11:30pm, I summoned every ounce of strength, physical and emotional that I had, and walked back to the PICU. As I was walking, I remember thinking that I was going to go say goodbye to my son.
Chris and I were sitting with Zach and his nurse when Zach’s surgeon walked into the room.
I held my breath and just looked at him…
He sat down, looked at me, and said, “okay, so how about some good news”?
I did feel some relief….but I now had my guard up.
The most recent blood work, showed that Zach’s bilirubin level had dropped a couple of points. The transfusion had worked.
They told us that Zach was still in the deep, dark, scary woods. The next 24 hours would be critical. That bilirubin needed to keep dropping…but it was heading in the right direction.
Chris and I made our way back to our room and curled up on the bed. The nurse told us that she would come get us if we needed to go, but promised us she would get him through the night. That was a big promise.
But she did.