-Just Stop Feeding Him
I have this habit of ignoring things I don’t want to do. I think part of me feels like if I ignore it long enough, it will go away, or in this case…I wont need to remember it anymore.
It has taken me so long to write this next part of Zachary’s journey because while the parts leading up to this were terrifying and raw, and nothing I want to ever go through ever again…this next part was the hardest to actually get through.
It was the hardest to get through because it didn’t happen fast. There were no quick answers. It was an absolute rollercoaster of highs and lows. And ultimately, the devastation that he wasn’t fixed.
This next part had the potential to break us, to break our family. This next part gave us time to think…too much time, alone, to think. This next part of Zachary’s story was filled with absolute frustration.
Zach started eating about 11 days after his surgery. We started with the Pedialyte again. 5cc’s every three hours. One teaspoon every three hours. So slow, but necessary to make sure he was ready. All signs pointed to him being ready.
The team quickly decided that we could move to a combination of Pedialyte and formula, and then ultimately just formula. We moved him up in volume, 5cc’s every day.
It was during this time, that Zachary’s team decided he no longer required intensive care. They wanted to move him out of the PICU, and up to the pedi floor in the floating hospital. Chris and I fought this as long as we could.
We were comfortable in the PICU. We hated the unknown. We loved the connections and relationships we made with the nurses and doctors in the PICU. We didn’t want to go up to the floor where Zach would be part of higher patient to nurse ratios, where they wouldn’t know how to comfort him, where they wouldn’t know how “we did things”. Moves are scary.
We also fought it because this move meant big changes for Chris and I, and Zach’s big brothers at home.
The nurses in the PICU recommended that one of us should be with Zach at all times once he moved up to the floor. They sang the nurses praises…but it was a different set up, with higher patient ratios…and it just wouldn’t be the same.
Once Zach had stabilized, and had come out of the deep, dark, scary woods, Chris and I felt comfortable leaving Zachary in the care of his amazing nurses in the PICU, and spending the night together with the boys at home. Once he moved, we knew that was going to end.
We ended up having to move out of the PICU on June 2nd. Chris had offered to spend the first night, and I went home to the boys, and made plans to come in the next day so that Chris could go home.
That was our plan: to switch places every 24 hours. This way, all of our boys saw each of us every day.
I’ll let Chris speak for himself about his first night, but when I showed up the next day in my jeans (that finally fit again!), my cute cardigan, and my make up done, I took one look at my exhausted husband and quickly realized I was in for an exhausting experience.
Chris left, and I was left alone with Zach. In a room that didn’t have a comfortable chair to sit in. Left alone in a room that didn’t have a door to the hallway- but to a prep area…two doors that kept us from hearing the outside world. Left alone in a room that had a window that looked out onto the rooftop of the hospital. Left alone in a room with white, blank, sterile walls. Just completely left alone. It was isolating. Reality set in very quickly. Being extremely uncomfortable set in very quickly. And the realization of the need for my yoga pants set in very quickly.
So in addition to dealing with learning how to live in a hospital, we were dealing with Zachary’s eating struggles. I remember sitting in our white, sterile, isolating room that first day, feeding Zach a bottle in a very uncomfortable wooden rocking chair, and the tears just started.
Something wasn’t right. He was struggling. He was struggling drinking less than an ounce of formula. I kept trying to push reflux. What he was doing looked an awful lot like what the boys did when they had reflux as babies. I kept trying to push reflux, because that would be easy. That would be an easy fix. I knew it then…I just didn’t want to admit it.
I remember crying, rocking my baby, and looking at our nurse Danielle, and just saying, “it shouldn’t be this hard. I just want to feed my baby”. She looked at me and simply said, “I know”. Danielle is a special, special nurse, and ended up being one of our biggest supporters.
In an effort to not drag these next couple of weeks out, I can sum them up in a couple of words; Just stop feeding him. Those were the four words I finally had to make a stand with. Those four words sum up the 23 days we spent up on the pedi floor. Those four words sum up the frustration, the roller coaster, and ultimately the realization that he was not fixed, and his fight would continue.
From June 2nd to June 25th, Chris and I sat in a hospital bed, holding our baby, and watched crappy tv.
It really is so hard to recap all of the events of these couple of weeks, and to be honest, I just don’t want to relive them.
We fed him. We stopped feeding him. We started feeding him again. We changed the formula. We changed it again. He ended up needing to have a Broviac placed. So he had surgery again. He went on IV nutrition. We cleaned up his vomit. We stopped feeding him. We started motility medication. We started feeding him again. We took x-rays. We did upper GI studies. We put him back on suction. We took him off. We tried feeding him just Pedialyte. We cleaned up his bile….
This is the way it went for 23 days.
So add the frustrations of nothing working, of Zach NOT getting better, NOT being able to eat…add all of that to the stressors of Chris and I not seeing each other for more than 20 minutes when we switched, to not seeing my children everyday, to not sleeping, to not eating. Add all of that together, and THAT is what we were dealing with. It was enough to break me some days. But I couldn’t break. Not completely. What choice did I have? I had to keep going. I had to keep fighting. This was not going to be our life.
I asked Liz, another one of our favorite nurses, if now was the time for a second opinion. She looked at me and said, “I’m so glad you just said that. Yes. It’s time for you to go”.
That was all I needed. I started researching a program called the CAIR (Center for Advanced Intestinal Rehabilitation) program at Boston Children’s Hospital. I made some phone calls and got the ball rolling.
On Friday June 19th I showed up for my shift, and Chris said, “so we’re going home on Monday”.
“What”?
“They’re sending us home on Monday”.
“No. He’s not ready. He’s not okay. What happened to our feeding plan? Why now? So we’re just going to go home with his central line, and his TPN (nutrition), and his shots”?
“Yeah…not sure what is happening here”.
“This can’t happen. I called Children’s and started the paperwork for an inpatient transfer. If they send us home, he can’t be an inpatient. Then how does he get into Children’s”?
It’s funny, the moments that ultimately define something huge, and show you the courage and strength you didn’t know you had.
Mama bear came out, and the next thing I knew I was making demands and stating expectations. I was advocating for the best care for my son. And it was no longer at Tufts.
That was a Friday.
Later that weekend I went toe to toe with the head of pediatric surgery. Zach continued to struggle so much. He couldn’t even tolerate a teaspoon of plain Pedialyte. So we stopped feeding him…again.
The surgeon came in and was talking about starting to feed him again, and I simply said, “No”.
He looked at me and said, “I think if we start again, going very slowly with the Pedialyte”….blah, blah, blah. Heard it all before.
“No”.
“But I truly feel”……
“Just stop feeding him! We are all done feeding him. You are not the one who has to keep taking the bottle away. You are not the one who has to try and comfort him when his stomach is awakened, and then deprived yet again. It’s not working. None of this is working. We are requesting a transfer to Children’s. If you send us home, I already have an outpatient appointment set up with Children’s on Tuesday, and we’ll be admitted through that appointment. We’re not feeding him anymore. We’re all done”.
Boom. Mama Bear.
The surgeon just looked at me, and asked, “how did you make that happen”?
“I get shit done”.
With that, he smiled, stood up, and walked out the door. We didn’t see him again.
It wasn’t his fault. He is an excellent surgeon, and was giving Zach everything he had in our surgeon’s absence. But everything he had…was nothing that Zach needed.
So we rode out the weekend, Zach was ultimately re-tubed, and again, so much bile came pouring out of his little body. I hated that tube. But I could see how much more comfortable he was with it. I knew it was the right choice.
On Monday morning, our surgeon was back. He came into the room, sat down on our bed, and just apologized. He never authorized our leaving. He had no idea where that order came from.
When I started to speak, I thought the tears were going to come…because they had come with every other conversation I had had with this man in the past.
But they didn’t come. The only thing that came was confidence. And assertiveness. This was such a new feeling.
“It’s time for us to go. You have been wonderful to us. You saved our son’s life three times. We will FOREVER be grateful to you. But it is time for us to go. I need you to make a phone call, now”.
“Ok”.
And that right there is what a good doctor does. Recognizes when something is beyond them. Recognizes that yes, they did so much good…so much good…but they’re not the one to see this through to the end. He was amazing to us. He is an amazing surgeon.
The next couple of days were a roller coaster. We had a bed on Tuesday, and then it was gone. Children’s had a couple of beds on Wednesday, but then they didn’t discharge how many they thought they were going to. So on Thursday, they promised Chris that it would happen.
It was my turn to stay with Zach. So I came in and we just waited for word that it was time to go. One of our favorite nurses finally came in and said that the ambulance would be coming in about 20 minutes, and she had called down to the NICU and the PICU to see if any of Zach’s old nurses and doctors wanted to come up and say goodbye.
We walked out of his room, and there were some of his old nurses, and one of the doctors from he PICU. They all took turns holding him, hugging him, hugging me, and told me that this was the right move. They wished us the best of luck, and asked us to keep in touch.
The EMT’s arrived, we strapped Zach into his little portable ambulance basinet, and we rolled out the door.
I felt re-energized, I felt nervous, I felt hopeful.
I have this habit of ignoring things I don’t want to do. I think part of me feels like if I ignore it long enough, it will go away, or in this case…I wont need to remember it anymore.
It has taken me so long to write this next part of Zachary’s journey because while the parts leading up to this were terrifying and raw, and nothing I want to ever go through ever again…this next part was the hardest to actually get through.
It was the hardest to get through because it didn’t happen fast. There were no quick answers. It was an absolute rollercoaster of highs and lows. And ultimately, the devastation that he wasn’t fixed.
This next part had the potential to break us, to break our family. This next part gave us time to think…too much time, alone, to think. This next part of Zachary’s story was filled with absolute frustration.
Zach started eating about 11 days after his surgery. We started with the Pedialyte again. 5cc’s every three hours. One teaspoon every three hours. So slow, but necessary to make sure he was ready. All signs pointed to him being ready.
The team quickly decided that we could move to a combination of Pedialyte and formula, and then ultimately just formula. We moved him up in volume, 5cc’s every day.
It was during this time, that Zachary’s team decided he no longer required intensive care. They wanted to move him out of the PICU, and up to the pedi floor in the floating hospital. Chris and I fought this as long as we could.
We were comfortable in the PICU. We hated the unknown. We loved the connections and relationships we made with the nurses and doctors in the PICU. We didn’t want to go up to the floor where Zach would be part of higher patient to nurse ratios, where they wouldn’t know how to comfort him, where they wouldn’t know how “we did things”. Moves are scary.
We also fought it because this move meant big changes for Chris and I, and Zach’s big brothers at home.
The nurses in the PICU recommended that one of us should be with Zach at all times once he moved up to the floor. They sang the nurses praises…but it was a different set up, with higher patient ratios…and it just wouldn’t be the same.
Once Zach had stabilized, and had come out of the deep, dark, scary woods, Chris and I felt comfortable leaving Zachary in the care of his amazing nurses in the PICU, and spending the night together with the boys at home. Once he moved, we knew that was going to end.
We ended up having to move out of the PICU on June 2nd. Chris had offered to spend the first night, and I went home to the boys, and made plans to come in the next day so that Chris could go home.
That was our plan: to switch places every 24 hours. This way, all of our boys saw each of us every day.
I’ll let Chris speak for himself about his first night, but when I showed up the next day in my jeans (that finally fit again!), my cute cardigan, and my make up done, I took one look at my exhausted husband and quickly realized I was in for an exhausting experience.
Chris left, and I was left alone with Zach. In a room that didn’t have a comfortable chair to sit in. Left alone in a room that didn’t have a door to the hallway- but to a prep area…two doors that kept us from hearing the outside world. Left alone in a room that had a window that looked out onto the rooftop of the hospital. Left alone in a room with white, blank, sterile walls. Just completely left alone. It was isolating. Reality set in very quickly. Being extremely uncomfortable set in very quickly. And the realization of the need for my yoga pants set in very quickly.
So in addition to dealing with learning how to live in a hospital, we were dealing with Zachary’s eating struggles. I remember sitting in our white, sterile, isolating room that first day, feeding Zach a bottle in a very uncomfortable wooden rocking chair, and the tears just started.
Something wasn’t right. He was struggling. He was struggling drinking less than an ounce of formula. I kept trying to push reflux. What he was doing looked an awful lot like what the boys did when they had reflux as babies. I kept trying to push reflux, because that would be easy. That would be an easy fix. I knew it then…I just didn’t want to admit it.
I remember crying, rocking my baby, and looking at our nurse Danielle, and just saying, “it shouldn’t be this hard. I just want to feed my baby”. She looked at me and simply said, “I know”. Danielle is a special, special nurse, and ended up being one of our biggest supporters.
In an effort to not drag these next couple of weeks out, I can sum them up in a couple of words; Just stop feeding him. Those were the four words I finally had to make a stand with. Those four words sum up the 23 days we spent up on the pedi floor. Those four words sum up the frustration, the roller coaster, and ultimately the realization that he was not fixed, and his fight would continue.
From June 2nd to June 25th, Chris and I sat in a hospital bed, holding our baby, and watched crappy tv.
It really is so hard to recap all of the events of these couple of weeks, and to be honest, I just don’t want to relive them.
We fed him. We stopped feeding him. We started feeding him again. We changed the formula. We changed it again. He ended up needing to have a Broviac placed. So he had surgery again. He went on IV nutrition. We cleaned up his vomit. We stopped feeding him. We started motility medication. We started feeding him again. We took x-rays. We did upper GI studies. We put him back on suction. We took him off. We tried feeding him just Pedialyte. We cleaned up his bile….
This is the way it went for 23 days.
So add the frustrations of nothing working, of Zach NOT getting better, NOT being able to eat…add all of that to the stressors of Chris and I not seeing each other for more than 20 minutes when we switched, to not seeing my children everyday, to not sleeping, to not eating. Add all of that together, and THAT is what we were dealing with. It was enough to break me some days. But I couldn’t break. Not completely. What choice did I have? I had to keep going. I had to keep fighting. This was not going to be our life.
I asked Liz, another one of our favorite nurses, if now was the time for a second opinion. She looked at me and said, “I’m so glad you just said that. Yes. It’s time for you to go”.
That was all I needed. I started researching a program called the CAIR (Center for Advanced Intestinal Rehabilitation) program at Boston Children’s Hospital. I made some phone calls and got the ball rolling.
On Friday June 19th I showed up for my shift, and Chris said, “so we’re going home on Monday”.
“What”?
“They’re sending us home on Monday”.
“No. He’s not ready. He’s not okay. What happened to our feeding plan? Why now? So we’re just going to go home with his central line, and his TPN (nutrition), and his shots”?
“Yeah…not sure what is happening here”.
“This can’t happen. I called Children’s and started the paperwork for an inpatient transfer. If they send us home, he can’t be an inpatient. Then how does he get into Children’s”?
It’s funny, the moments that ultimately define something huge, and show you the courage and strength you didn’t know you had.
Mama bear came out, and the next thing I knew I was making demands and stating expectations. I was advocating for the best care for my son. And it was no longer at Tufts.
That was a Friday.
Later that weekend I went toe to toe with the head of pediatric surgery. Zach continued to struggle so much. He couldn’t even tolerate a teaspoon of plain Pedialyte. So we stopped feeding him…again.
The surgeon came in and was talking about starting to feed him again, and I simply said, “No”.
He looked at me and said, “I think if we start again, going very slowly with the Pedialyte”….blah, blah, blah. Heard it all before.
“No”.
“But I truly feel”……
“Just stop feeding him! We are all done feeding him. You are not the one who has to keep taking the bottle away. You are not the one who has to try and comfort him when his stomach is awakened, and then deprived yet again. It’s not working. None of this is working. We are requesting a transfer to Children’s. If you send us home, I already have an outpatient appointment set up with Children’s on Tuesday, and we’ll be admitted through that appointment. We’re not feeding him anymore. We’re all done”.
Boom. Mama Bear.
The surgeon just looked at me, and asked, “how did you make that happen”?
“I get shit done”.
With that, he smiled, stood up, and walked out the door. We didn’t see him again.
It wasn’t his fault. He is an excellent surgeon, and was giving Zach everything he had in our surgeon’s absence. But everything he had…was nothing that Zach needed.
So we rode out the weekend, Zach was ultimately re-tubed, and again, so much bile came pouring out of his little body. I hated that tube. But I could see how much more comfortable he was with it. I knew it was the right choice.
On Monday morning, our surgeon was back. He came into the room, sat down on our bed, and just apologized. He never authorized our leaving. He had no idea where that order came from.
When I started to speak, I thought the tears were going to come…because they had come with every other conversation I had had with this man in the past.
But they didn’t come. The only thing that came was confidence. And assertiveness. This was such a new feeling.
“It’s time for us to go. You have been wonderful to us. You saved our son’s life three times. We will FOREVER be grateful to you. But it is time for us to go. I need you to make a phone call, now”.
“Ok”.
And that right there is what a good doctor does. Recognizes when something is beyond them. Recognizes that yes, they did so much good…so much good…but they’re not the one to see this through to the end. He was amazing to us. He is an amazing surgeon.
The next couple of days were a roller coaster. We had a bed on Tuesday, and then it was gone. Children’s had a couple of beds on Wednesday, but then they didn’t discharge how many they thought they were going to. So on Thursday, they promised Chris that it would happen.
It was my turn to stay with Zach. So I came in and we just waited for word that it was time to go. One of our favorite nurses finally came in and said that the ambulance would be coming in about 20 minutes, and she had called down to the NICU and the PICU to see if any of Zach’s old nurses and doctors wanted to come up and say goodbye.
We walked out of his room, and there were some of his old nurses, and one of the doctors from he PICU. They all took turns holding him, hugging him, hugging me, and told me that this was the right move. They wished us the best of luck, and asked us to keep in touch.
The EMT’s arrived, we strapped Zach into his little portable ambulance basinet, and we rolled out the door.
I felt re-energized, I felt nervous, I felt hopeful.