This photo was taken last week and is probably one of the hardest photos for me to look at but it captures Zariah’s journey last week. Last week on Monday, Zariah began a four day journey of very difficult events. Monday night she began to develop a lot of mucous and was throwing up a lot and after 1 day of this it started her trend of spells. On Tuesday night she had 4 spells. Up until last Tuesday she only had 4 spells over almost a 2 month period, our entire stay in the NICU thus far. From Wednesday to Thursday she developed a cough, something she never has had since she has been born. It was a very explosive cough that would cause her face to change color and a lot of mucous to be expelled. On Friday morning when I called for an update, we had a new nurse, one who has never cared for Zariah. I had asked the hospital staff several times in the past that we have continuous care for Zariah, so we would be with nurses who knew Zariah and not to have anyone care for Zariah, who never worked with our family. So my phone call Friday morning caught me by surprise. I never talked to this nurse before. The nurse asked for my phone code, I have been there 2 months and no one has asked for my phone code because they all know me. So I told the nurse I would be there in 10 minutes and I will just talk about her night when I arrive at the hospital. Upon walking in Zariah’s room, the nurse entered her room. I asked him how her night was, he said, “She had several spells, was unresponsive and needed a neopuff”. I literally lost him at several spells. I was outraged! I have told the nurses, wrote it on a note in her room to call me with any changes. Communication has been my biggest battle in the NICU, so I was outraged! How could my daughter have such a hard night and morning and I was not notified, so if I wanted too I could come up and be with her. I demanded they find a Jtube to place for Zariah to eliminate all this hardship for her, since the Jtube would allow her food to go into her intestines instead of into her stomach which is what causes the acid reflux, mucous, and has led to her on Friday having 10 spells to where she became unresponsive and needed a neopuff for two of her spells. After Friday they placed an ivy for fluids and nutrition to pass into her through an ivy and stopped her feedings through her Gtube. They checked her for infections. Everything came back clear. We have had the weekend to recover and she has not had any spells. Praise God!🙏🙏🙏They had located a Jtube on Friday after I demanded that they have an answer of when they would have one. We had waited a week and half for an answer about locating a Jtube, because we were told they were on back order. Over the last week and a half, we have had four days of recovering from the anesthesia she was given for her surgery, then we spent fours days battling vomit, mucous, desats and spells and then three days recovering with just ivy fluids. All this could have been limited if they had kept her on breathing support longer post surgery and if they would have had a Jtube to place on her surgery date, May 24, when she was suppose to receive a G-J tube but only received the Gtube because the Jtube was not in the kit. Radiology was suppose to place the Jtube yesterday. But 5 minutes before we were suppose to go down to have it placed, they called Zariah’s nurse and said they couldn’t do it and we would have to have a GI doctor place it which meant we had to go to the OR. The hospital staff told me for three days leading up to the placement of the Jtube yesterday, she would not need anesthesia. When we entered the OR room we were told by the GI doctor that they would place it through her JPEG, which she would not need anesthesia for the placement. Then the anesthesiologist came in and said that she would need anesthesia because they were going to do an endoscopy. This was not the plan that was discussed for three days leading to to the placement of the Jtube. I was outraged! We would not even be in this place if on the surgery date they would have completed what I signed a consent form on 5/23/23 to have completed. So yesterday we postponed the placement of the Jtube in the OR and are planning to have it placed in the Radiology department today at 11 am. Continued prayers for our sweet Zariah and any financial gift would be so much appreciated!❤️🙏❤️🙏❤️ Thank you for taking time to read our family update.❤️❤️❤️
