Here is a copy of the letter I sent TMC after our son was hospitalized:
My 16 day old baby was hospitalized on the pediatric unit for jaundice in January. I received a satisfaction survey after that, but didn’t have the time to fill it out. It also didn’t address my concerns, so I thought I’d send you my thoughts now.
Our experience in the pediatric ED was positive.
We had 2 requests when we were told he would be admitted: a private room or a room where the other patient wasn’t watching TV. We didn’t get either request. I understand this is a physical reality of your hospital, but it was difficult. I mention this in hopes that if you rebuild your hospital, you will construct only private rooms. (So much for HIPPA policy. I learned every detail of our roommate’s condition whenever the doctors or nurses spoke with the family.) However, I was more upset by other issues.
1.My son had bili levels drawn every few hours. Every blood draw, I had to inform your staff that a heel warmer would be applied to my baby’s foot to insure as good, and therefore as comfortable, a stick as possible. NOT ONE person had a heel warmer available prior to my request. One nurse (yes, nurse, she was not a tech,) out and out refused and stuck my baby despite my objections.
2.Every blood draw, your staff wanted to wrap my baby in blankets. NOT ONE person suggested I nurse him to take advantage of the natural anesthetic effect of breastfeeding. Obviously, I insisted we do this and he didn’t scream through any of his many draws.
3.I questioned one of the techs drawing blood about the microcontainer she’d selected. She assured me it was a designated container. They had to stick my baby again because the blood from that sample had “clotted.” (I have verified with another lab, bili levels are supposed to clot. I assume that was an excuse to cover up the incorrect microcontainer.)
4.Several of the people drawing were going to do 2 sticks to make a cross shape to increase the blood flow. I would only let them stick him once. If the flow wasn’t good, I would take over and squeeze his foot since I am good at this (an old NICU nurse) and he usually didn’t need a second stick. If the flow wasn’t good, I requested a second stick. I do not understand why your staff wanted to start with 2 sticks before they knew if that was necessary.
5.I insisted my baby boy wear a diaper when he was receiving phototherapy. I received snide comments from several of the nurses regarding this. They stated the diapers were always removed and that it would be better for my baby if the diaper were removed. I insisted he remain diapered. After his discharge I checked the AAP policy which states, “In most circumstances, it is not necessary to remove the infant’s diaper, but when bilirubin levels approach the exchange transfusion range, the diaper should be removed until there is clear evidence of a significant decline in the bilirubin level.” As my baby was not in range of an exchange transfusion, and his second bili level was greatly reduced, the nurses’ information was not supported. The fact that there were snide comments is obviously inappropriate under any circumstance.
6.My baby was admitted into his room at midnight. During the next 24 hours I only received 2 periods of 1 hour of sleep. Our attending came by during my one daytime nap and my husband didn’t wake me. Since I missed out on that conversation, I was told the residents would come and speak with me later that evening. Because they were very busy, it was understandable they did not arrive until about 9 p.m. However, the information they gave us (that our baby was to remain under the bili lights) was different than the info my husband received from the attending (that the lights would be turned off at night so we could see what his rebound bili level was.) We went forth with phototherapy that night and learned in the morning from our attending that my husband’s info was correct and the residents’ info was wrong.
7.Because I was essentially 36 hours without sleep and had spent the day rocking my baby under the bililights to keep him calm (I wore sunglasses and a blanket over my head,) I told the residents I couldn’t keep my baby calm with regular bililights. We needed an alternative. It took some wrangling, but they finally agreed to a bilibed. Somewhere in there, they mentioned the final decision would be the attending’s. I corrected them that the final decision would be mine and my husband’s. They essentially threatened me by telling me if we checked out AMA, our insurance might not cover the bill. (Check out? Who said that? And what does that have to do with the fact that they need to respect our authority regarding our child?)
8.The bili bed was better than the bili lights at allowing our son to calm without being cuddled. However, I still had to stand by his bassinet to quiet him. I needed sleep and could not do this in a standing position. I told the nurses I needed his bassinet at a lower level so I could lie beside it with my hands touching my baby. The charge nurse came into the room threatening to call the house supervisor (was that supposed to scare me into submission?) She also kept repeating, “We need to do this for his safety,” as if she were more concerned about MY baby’s safety than I was. I told her my goal was to insure my baby got his therapy and that he, my husband, our roommates, and I got some sleep. This could not happen with his bassinet elevated in the bassinet stand. We eventually came to an agreement of where to place the bassinet, but I couldn’t believe I’d been threatened and it had been insinuated that the staff was more concerned for my baby’s safety than I was. Why did it need to be an incident rather than a conversation? (If the residents had followed the attendings instructions, all of this would have been a non-issue as our baby would have slept snuggled instead of sleeping in the bilibed.)
Needless to say, I was quite dissatisfied with the care my son received. I hope this letter will help you educate your staff to higher standards of patient care.