After trying so hard to get pregnant with our first child we were surprised to find ourselves pregnant with our second child so soon. We joke that Grant Lars Visscher was in such a hurry to get here that he didn’t allow his body to fully develop and that is why he was born with a heart defect.
I was 18 weeks pregnant with Grant when we got the news during an ultra-sound that there was something wrong with his heart. From that day on we got to watch his heart grow on the hospital monitors during our almost weekly medical checks. After he was born on April 8, 2008 we learned that he had coarctation of the aorta and would require surgery.
Grant’s surgery was on Saturday, April 12 at 10:00 am and lasted until after 3:00pm. The surgery went well, they inserted a gortex valve to replace the coarctation and put the replacement valve correctly in front of his esophagus and trachea. The doctors said we could expect to be in the hospital for about 10 days.
Our little boy was recovering so well from his surgery that he was moved from the Pediatric Intensive Care Unit to the Cardiac Progressive Care Unit on Tuesday, April 15. However, the very next day he was having trouble with his pulse ox so a chest x-ray was ordered and they discovered his lower left lung had collapsed so he was put on a CPAT machine. He quickly recovered from that and the next day the CPAT was removed. At this time he struggled with feedings so the staff deemed it necessary on Thursday, April 17 to have him put on a feeding tube. However, they struggled with putting it in and ended up doing it under x-ray that day.
On Saturday, April 19 the nurse on duty that morning was not comfortable feeding Grant with a bulster feed in a TP feeding tube. She consulted with the doctor and was approved to change the style of feeding tube. She then proceeded to insert the tube into Grant’s nose. I told her that the staff had to do it under x-ray a few days earlier. She struggled a bit and then got it in. She then asked me if I wanted to learn how to verify feeding tube placement since Grant would probably be going home with it.
She then proceeded to show me how to insert a burst of air into the NG tube and listen for the sounds in his body through the stethoscope. At this time I ask her how you would know if the burst of air was in his stomach or not? I stated, “Wouldn’t there be a burst sound regardless of where it is in the body?” The nurse said that she supposed that would be true. She then told me that is why they take a sample of fluid out of the tube to verify that it is taking fluid out of the stomach. She then did that and showed me the fluid in the tube. I then asked her, “How did she know that was fluid from the stomach and not elsewhere in the body?” She then told me she had been doing this for years and just knew. I had no idea that the questions I was asking then would foreshadowed the events that followed.
The nurse then started Grant’s feeding of milk for the day. This was late morning. At that time I took Grant out of his bed and held him while seated. While holding him he became very fussy and his pulse ox started to fluctuate. The nurse checked things and said it could because of them weaning him down on his oxygen. A couple of hours later I paged the nurse because Grant was sounding raspy and was blowing whitish bubbles out of his mouth. A different nurse came in because our regular day nurse was at lunch. I explained what was happening to Grant and the nurse had me put him in the crib. She then began to suction out his mouth with a long tube. Grant seemed to do a little better after that.
That afternoon my husband Rich came and picked me up so that we could run some errands. While we were out my dad and step-mom went to visit Grant. We returned to the hospital around 6:30/7:00 p.m. and my step-mom handed Grant to Rich to hold. They then proceeded to tell us that Grant seemed to be distressed and that when they called the evening nurse in she told him that the sounds from his monitors were going off probably because he was moving down in his crib and needed to be moved back up. They said that they noticed that Grant seemed to do better when they held him upright.
It was around 8:00 p.m. when my parents left and Rich was holding Grant. At this time Grant started blowing whitish bubbles again and made gurgling sounds. We also noticed that Grant’s color was off. I told Rich that he didn’t look right and we paged the nurse. The evening nurse came in we told her that his color was off and that he was gurgling and blowing whitish bubbles. We also told her that when Grant did this earlier in the day that the mid-day nurse suctioned him out. She then got a big suction tube to suction out his nose, we told her that the earlier nurse used a smaller suction tube in his mouth, not his nose, she then got the other suction tube and started to suction him through his mouth.
At this point the evening nurse seemed a bit distracted to us. We felt like we were having to tell her what to do. After she suctioned Grants mouth she started his evening feed. I am not sure why she started his feed when we were concerned about his coloring and his blowing white bubbles. Just after she started his feed his color got worse. The nurse was doing something with the feeding tube or monitor when I told her that Grant was turning blue around his mouth. She then hit the call light and told the person that answered that we needed a nurse in here. The lady told her that she would send my nurse in. Our nurse told the lady that she was the nurse and needed a charge nurse in here right away. No one came in at that second so the nurse told me to go into the hall and holler for a charge nurse. I ran into the hall and hollered that we needed a charge nurse now that Grant was turning blue. A few nurses ran into the room then and within in seconds an over head page was made requesting code blue to room 902. Immediately thereafter about 20 people charged into the room to help revive Grant.
We had Mason with us so Rich took Mason out into the hall while I stayed in the room watching them work on Grant. One of the male doctors in the room started to ask me questions and I answered them. A nurse took Mason from Rich so that he could be in the room too. While Rich and I watched them work on Grant we heard the doctor that was putting a breathing tube into Grant’s mouth state that the NG tube had gone through Grant’s trachea. Sometime during this a nurse started describing what the team was doing to try to save Grant. Around 9:00pm a doctor turned to us to start to tell us that they have done all that they could for Grant. I cut her off and begged her to keep working on him and to not give up. She gave us sad eyes and said that they would try for 10 more minutes. The nurse that was describing things to us then asked us if we would like to hold Grant’s feet while they continued to work on him so we did, each of us taking one of Grant’s tiny feet into our hands. Shortly after that the doctor said that they had done all that they could for Grant. Rich and I both collapsed to the ground in sobs of despair. Grant had just died before our eyes. He was only 11 days old.
After we collected ourselves the staff let us be with Grant alone. Sometime after, while we were holding him together on the couch in the room, the doctor came in to tell us how sorry she was that they could not save him. I asked her how come this happened, that I didn’t understand since he was doing so well and was supposed to go home later that week. She told us that they think the NG tube had something to do with his death.
An autopsy proved the doctor correct. Grant died because a feeding tube was misplaced into his lung and the verification technique used incorrectly verified its placement. Soon after Grant’s death on April 19, 2008 the hospital changed their policy for feeding tube placement and verification. Once a feeding tube had been placed a pH strip is used to verify the fluid pulled from the tube to verify it is fluid from the stomach and not elsewhere in the body. If there is any struggle to place the feeding tube it is then inserted under x-ray.
Since Grant’s death in 2008 I have been on a quest to find a “Gold Standard” solution to prevent others from experiencing the loss that I have due to a misplaced feeding tube. Through this journey I have become a parent partner on the Patient Safety Committee at the hospital that he died at and have also become a member on the American Society of Parenteral and Enteral Nutrition (ASPEN) sub-committee NOVEL (seeking New Opportunities for Verification of Enteral tube Location). It is also through this journey and working with these groups that I have learned there is much more work needed to find the “Gold Standard” for feeding tube placement and verification.