Today, during rounds, our nurse practitioner said that she was concerned about Chris Jr.
Today, we were told that he was now labeled as "failure to thrive".
Today, my heart was broken again.
He is labeled as "failure to thrive" because he has not had much weight gain in the last couple of weeks.
Yet, this doesn't have anything to do with heart. This doesn't have to do anything with him, really.
I honestly blame his medical team.
When we were transferred to HKU, the goal was to work on Chris Jr.'s nutrition. It has been 3 weeks and we are still working on his feeding. We have had family meetings and I had to tell his medical team that I don't think they are listening to any of our concerns.
Right now, Chris Jr's caloric intake and nutrition needs are calculated by a dietician. Someone who crunches in numbers and just tells the NPs what she thinks. She hasn't met with us. She hasn't met or seen Chris Jr. She simply looks at numbers. I won't deny the importance of her job but I feel like she doesn't take into account that Chris Jr. is an indivdual. What works for some may not work for others.
Week 1 in HKU:
We were transferred to HKU. Chris Jr. was not allowed to feed from a bottle. We worked with speech therapy to make sure that he was able to latch again properly. All of his nutrition came strictly from his NG tube. He absolutely hated it but I can't blame him. What person would want to be fed using a tube going through their nose into their stomach? But we knew something was wrong. He couldn't tolerate the feeds. They wanted him to feed at a rate of 35-40 ml/hour and he couldn't tolerate it. He kept vomiting. And vomiting. Projectile vomiting.
We knew there was something wrong yet the medical team had no answers for us. Chris Jr. continued to get his feeds via his NG tube. He continued to vomit. His feeding schedule was changed every single day. He would receive NG feeds every 5 hours with a 1 hour break. Or he was on continuous feeds all day. Nothing worked. He just continued to vomit
Our medical team thought that it was best to move Chris Jr's NG tube back to an NJ tube. The first time his NJ tube was placed, he was sedated. If I knew what was going to happen, I wouldn't have agreed to it. During this placement, Chris Jr. wasn't sedated. We went to the Radiology department. They restrained Chris Jr. and stuck a tube down his nose into his intestine. I have never seen my son struggle like that. I have never heard my son scream like that. They told me that it would be a quick 5 minute process. It took them about 20 minutes to get the tube in. My son screamed bloody murder for 20 minutes. They asked me if I wanted to leave the room but I refused to leave my son. It was horrible. What made it even worse was that we were told that this would help him. It took them 20 minutes to get the tube in and as soon as we got back to the room within 5 minutes, Chris Jr. had sneezed it out. He sneezed out a tube that was in his intestine. He sneezed so hard that the tube came out and was dangling in his mouth. He went through all of that for nothing. For nothing. He then had to get a NG tube placed. So there was no resolve to his feeding issue.
That Friday of our first week, Chris Jr. was allowed to take no more than 10mls by bottle which he did fine. Yet, he wasn't allowed to "feed" from the bottle until he was cleared. That weekend, he showed an interest in wanting more by mouth but were told that we couldn't give him more since had not been cleared. If he took any breastmilk from the bottle, he didn't throw up. He only threw up from his feedings with his NG tube.
During his first week in HKU, his medical team mentioned a G-tube procedure. Basically they would cut into his stomach and place a connection so that he could be directly fed into his stomach. We were not happy with this at all. Another surgery. We almost lost our son during his last surgery and were terrified of losing him again. Besides, Chris Jr. had not even been cleared to feed from his bottle yet. Why would would choose a surgical procedure if we don't even know if he can take from his bottle or a reason as to why he was having issues with his NG feeds?
Week 2 of HKU: Chris Jr. had a swallow study performed. The speech therapist wrote in her notes that Chris Jr. had an oral aversion which wasn't true. The swallow study was done to make sure that Chris Jr. wasn't aspirating (milk going into his lungs) when he drank from his bottle. He succesfully completed that. He was cleared to feed from his bottle. Now, all we needed to work on was making sure he drank enough.
The day after his swallow study, Chris Jr. had an Upper GI study with another NJ tube placement. His Upper GI study was done to make sure that his GI system was anatomically correct. If his stomach was tilted or somethign else was misaligned, this could be causing the vomiting. His results were normal. Daddy went with him this time for his NJ tube placement. Yet again, within 20 minutes of having his NJ tube being placed, it came out again.
HIs medical team continued to push for the G-tube. We were not happy with this at all. We wanted answers. Why was our son not tolerating his feeds? How were they determining that he needed a G tube if he had not even been allowed to drink by mouth yet? It made no sense. I went to my Heart Moms group on FB desperately hoping to get answers since I felt like we were being ignored by his care team. We had a consult with GI to see what our options were but we mosty wanted answers. The GI consult informed us that his medical team wanted Chris Jr. to get something that's called a Nissen Fundoplication in addition to the G tube. They would wrap his stomach in order to prevent reflux. Of course I asked questions. Does this mean Chris Jr. has reflux? Is that what's causing his vomiting? They said they were unsure. Soooooo you're going to perform a surgical procedure on my son without even being sure of the cause of his vomiting?
Sensing my frustration, Chris Jr.'s social worker scheduled a family meeting. I refused to go at first because I was tired of his team. Again, no answers. None. Instead, they presented a new plan. They said that they wanted Chris Jr. to get an G-J tube instead of the G tube. They didn't think he was a candidate for the Nissen since they weren't sure that it was reflux. They told us our procedure was scheduled for Wednesday of the next week. We were all on board but still wanted answers. What was happening? If he couldn't tolerate the NG tube, how would the G-tube be any different? They mentioned that he might be suffering from gastroparesis. Basically due to his surgery, his cardiac arrest, and some of his medications, he had stomach motility issues. This made sense. With the NG tube, he would get to a certain volume and then start vomiting. He couldn't tolerate the volume. It wasn't a reflux issue yet this wasn't a definite answer. That night, they started him on a new medication- Erythromycin which was supposed to help with motility issues. Great. But now a new question. How would we know if this was helping him if they wanted to just do another surgery?
The day after our family meeting, we learned that the plan proposed at the meeting wouldn't work. Chris Jr. was too young to have a G-J tube placed. Now, they wanted to do the Nissen. Our GI consult told us that she didn't think Chris Jr. was experiencing reflux and wouldn't recommend the Nissen. Sooooo why was he having the Nissen done? Later that night, we had a surgery consult. We explained our entire situation to him. That Chris Jr. was just started on a new medication and we didn't know if would work. That Chris Jr. was still being weaned off methadone and Ativan (these two meds cause motility issues). That Chris Jr. had just been cleared to feed from a bottle and it hadn't even been a full week yet. The surgeon told us that he felt like the conversation about the G-tube was premature. That there were too many variables at play here and he didn't think that a G-tube should be placed just yet. This put us on edge and we just ended up canceling his G-tube procedure altogether. We didn't like that the team wasn't on the same page.
Week 3 in HKU (current): The day for Chris Jr's procedure came. We refused. That day, our medical team told us that we either had to get the G-tube or go to a rehab facility. They said we could no longer stay at the hospital because Chris Jr. was only working on his feeding. Since it is flu and RSV season, we were pretty much keeping a healthy kid in the hospital simply to work on his feeding. In our eyes, he had made significant progress. His vomiting reduced significantly. He was eating more from his bottle. His feedings from his NG tube had increased. Yes, he was making progress but not quickly enough for his team. There was also no way to tell how long it would take him to get to his optimal level. So basically they're kicking us out. As a mom, I had to make a tough decision. At first, Chris and I wanted to go to the rehab facility. That was until we visited. Only one parent is allowed at the bedside. The rooms are shared. The services provided do not meet Chris Jr.'s needs. After visiting the faility, Chris Jr pulled out his NG tube. This was the perfect time to see how he would feed just from the bottle. He did great but an hour later I asked them to put it back. Taking his bottle isn't the problem. He can't tolerate his meds. Chris Jr. is on 15 diff meds and is scheduled to receive 2-3 meds every 2 hours. After his NG tube was pulled, he had to take abour 3mls of meds by mouth. He vomited within 5 mins. After that, I agreed to the G tube. Even if his feeding is back on track, he would not be able to tolerate his med schedule.
As a mom, I have had to see my son suffer every day. I am sleep deprived. Every day, I want to break down and cry. It's not fair. My son is miserable. Now my son has his light back. He smiles. He laughs. But he is traumatized. He is so traumatized. If he sees a person in a white coat, he freaks out. If he sees a stethoscope, he freaks out. Now, it's to the point that if our room door opens, he freaks out. His behavior has changed so much. He's back to laughing and smiling but his "Stranger Danger" game is serious. His needs have changed. Now, he wants Mama for everything. He can't sleep with out me. Eat without me. If I leave his sight, he freaks out. At first, I was okay with this since I went almost 2 weeks without holding my son. He wants the cuddles- He can get ALL the cuddles. However, I went from pumping 6-7 times a day to 1 time a day because I have to constantly hold him. I went from making 50-60oz to about 15 oz/ day. Right now, it's okay because I've made quite a stash. I've come to terms with the end of my pumping journey. Being able to comfort my son is important to me. He has to endure so much for this hospital stay. Multiple people in his face. Being poked all the time. Interrupted sleep. IV placements every couple days. NG placements every couple of days. 15 meds every day. The worst thing about his meds is that one of his meds has to be given to him intramuscularly (IM). His IM injection sites are his thighs. He gets a shot in his thigh twice a day. Bloody Murder. It's now to the point that if you even touch his thigh, he starts to scream. We are at our wits end. I'm ready to take my baby home. We had our consult with the surgeon who will be placing his G-tube. His G-tube will not be long-term. His procedure will only last 15-20 minutes. However, since he is a heart baby, it is riskier for him. He will be sedated again and will need to be on oxygen. I'm absolutely terrified of this upcoming procedure but I know it will put us one step closer to going home. What my son endures every day isn't worth it anymore. He needs to be home.