14/03/2020
Good Evening. Hope you all are well. I wanted to give an update for the past month or so.
On February 11th, while an hour away from "home" on a field trip (I drove the school on their field trip and also chaperones, thank God), Ava started to not feel well. At first she said her belly hurt. I asked if she needed a belly pill and she said yes. So I gave her medicine. She was ok through the presentation the staff of the museum was putting on. They then moved this kids to a classroom to do some hands on work. Ava was just sitting there. Not participating. The color started to drain from her face. I "lipped" to her, "are you ok?", she shook her head no. She then said she needed to lay down. I had her come over to me (I was sitting against the wall of the classroom). As soon as she sat in my lap I could feel the heat radiating off her. She was literally on fire. But the only complaint she had was her belly hurt. When the classroom work ended the staff took the kids to walk around the museum. While on the walk Ava collapsed to the floor saying her belly hurt. I attempted to contact my supervisor to see if they can get another bus to is so I can leave with her. Unfortunately, they couldn't get one out fast enough. The new bus would be there about the same time the school was leaving the museum. I brought Ava out to the bus so she could lay down in the seat. I contacted her Dad and asked him to meet me at the school and take her to the ER. Which he did. I was stuck at work for about 3 more hours. There were no other drivers that could cover me. I left work and went straight to the ER. She was still in a lot of pain and still had a fever. It was at this point 102.3. The nurse came in about 10 min after I got there to discharge her. I asked to speak with the DR because I was not comfortable with them just discharging her when she has a fever and in pain. (My mindset from dealing with this for 6 years is she had a blockage and it was "killing" the intestine causing the fever). The DR reassured me that was not the case. He said he did in fact do an ultrasound and other than a really large lymph node, it was normal. He said he also did a flu swab and that it was negative. I still wasn't comfortable. He suggested then I contact her Drs. By this time it is about 8pm. So I took her home. I emailed her GI Dr and gave her a tun down of what was going on. She responded to me the following day first thing in the morning suggesting I bring Ava to the Children's hospital ER. We did. We took the trip. When we got there they did their own ultrasound. They did not find any blockages and the also did not see the lymph node. While in the ER I received a phone call from our local hospital stating that Ava's 24hr flu swab came back positive for Influenza B. I notified the staff. The ER Dr came in and said that due to her GI issues and previous diagnosis of mesenteric lymphadenitis the flu was attacking her GI tract. They offered for us to be admitted and given IV toradol to help manage the pain and fevers. However, the rooms on the floors were all full we would have to stay in the ER. I chose to bring her home so she was in the comfort of her own bed and I started to piggy back Tylenol and Motrin. I refused the Tamiflu due to the GI side effects. Within about 3 days she was fever free without and medications. She was sad she missed her Valentine's Day party at school but her teacher sent home all her Valentine's.
Fast forward to March 9th. I recieved a phone call from the school nurse at 1:30pm saying Ava had been in the office twice with belly pain and she felt Ava should be picked up. Again, I was stuck at work so her dad went to the school to pick her up. He said that as soon as she got in the car she fell asleep (which is Ava's MO for having something going on in her belly, either the abdominal migraine or an intussusception). He got her to my house and gave her Zofran cause she was nauseous and an hour latwr gave her belly medicine and then left her with her older sister because he too had to work. My boyfriend was off work so he went to my house and picked the kids up and brought them to his house just in case Ava had an episode she would be with a trusted adult. When I got off work I went to his house. Ava said her belly hurt but was not acting as if though it were a migraine or intussusception. She wasn't presenting with severe pain or vomiting. Hours later she was still in pain. With it being unusual for her pain to last this long I chose to bring her to our local hospital to have an ultrasound done just to be on the safe side. Her ultrasound was positive for an intussusception. They called an ambulance to have her transported to the Children's hospital. She received Morphine before leaving. We arrived at the hospital and the Drs already had an ultrasound ordered. She had the ultrasound done and the Drs said there was no intussusception. They wanted to try to see if Ava could drink and eat. However, before she was even able to try she started to vomit. She was crying her belly hurt. The Dr was in the room to witness this. They decided to order an xray to see if there's something the ultrasound missed. We went to xray and were back in her room in the ER for maybe 30min when the same ultrasound tech came in and said they wanted to repeat the ultrasound due to the results of the xray. I still didn't know what these results are. So we went back to ultrasound. The tech brought us in the room and said he'll be back. He came back in the room with the radiologist. The radiologist said he wanted to see for himself. He then performed the ultrasound. He had 3 students with him and was telling the students everything he was seeing and pointing out the different parts of the colon. He completed the ultrasound and asked if GI had talked to me yet. I said no. He said they'll be talking to you. Amd he then left the room. Leaving me with my thoughts of all the things that could be going on since radiologists do not normally perform an exam unless it's serious. We go back to the room and the ER Dr comes in and tells me that Ava has a blockage at her old surgical site and her small bowel is dilated. They then make her NPO again and tell me she needs to be admitted. Ava gets admitted and is brought up to the floor. She is sent for another xray to see if there are any changes. The xray did not change at all. They ordered a CT scan with contrast. Ava did NOT like the feeling of the contrast I had to stand at her head and try to hold her down and still for them to get the images they needed. By this time 28 hours have passed since she was sent home from school in pain. The Drs never came in that night to tell me the results. The following morning the GI team came in told me her CT scan looked good. The blockage had cleared (which made sense since Ava had a bowel movement). They said the bowel was still dilated. They wanted to take her off NPO and let her eat and see how she did. Ava ate and had pain almost immediately after finishing. The GI Dr came back in and said they want to do more testing. However, since she was able to eat, even with pain, she didn't vomit, they can discharge her and we need to follow up with GI the first week of April. They want to do another colonoscopy, endoscopy, and capsule endoscopy. They want to see if perhaps scar tissue could've been the cause for the blockage and the backup (things normal for the large bowel were in the small bowel. But since Ava no longer has the valve to stop that backup from happening this is par for the course).
As of right now Ava is back to her silly, active self. We shall see what these new images show. In my opinion worst case scenario is she will need to go back to the OR and have laparoscopic surgery done to remove scar tissue. I just pray sooner then later she can be 100% relieved from this pain and these boughts of pain and vomiting. There's got to be another idea from some other Dr out there in the world that has been able to 100% stop this from happening. Her surgeon said he could tack down little sections of the small bowel however, that could have it's own issues. As of right now I feel like we are back at square one. And I need to fight for her all over again.
After her appt in April I will update again with what the concrete plan is. Thank you all for taking your time to educate yourselves on intussusception and for those that lift Ava up in prayer frequently. You are much appreciated.
Thank you
