Update on ..sorry long

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Hello everyone, First let me say that I have been offline since I posted update last Sunday afternoon, with the exception of popping on-line briefly Monday night for a work related email and that had been it. But when I login today I had 2578 emails....18 of them spam... I was just way to overwhelmed! So I scanned through each page and pulled out emails I had to have and deleted most group emails. I hated doing it because it never fails, 3 weeks from now I will find out that something I am interested was posted and I missed out on information that I could use now. Anyhow.. Shortly after I posted update Sunday afternoon thing got scary. We had gotten up a couple of time to walk short distances and he did great. Along came dinner and all of a sudden he is so lethargic he is falling asleep in his food.

We figured that this was the 1st day since he was admitted Thursday he was aloud out of bed, it was just to much for his little body. We managed to get him to stay awake long enough to eat most of his dinner and he took a brief nap. After wards he was looking and feeling better. He asked to get up and walk again. We asked the nurse and she agreed. We got up and about 15 feet away from his room, when he started shivering bad and was cold to the touch and was crying whenever we touched him, even on the arm. We got him back to bed and called the nurse. In checking him over she checked his surgery area. had developed a HUGE bruise from his belly button to his pubic hair line and from hip to hip. Two hours earlier when the nurses checked him he had some bruising just slightly around the surgery area. They paged the on call resident, she

evaluated him and called the surgeon. by now is wrapped in warmed blanks to warm him up, they checked his blood sugar levels, did vitals ( temp was okay) Surgeon ordered hourly vitals and had resident mark the bruise to see if it spread further. This was about 6:45. By 8:00 is feeling warm and his cheeks are rosy. Bob pulls the blankets off him and I went to get the nurse. I told her we did not know if it was just because he had the blankets on or if he was starting a fever. She waited 10 minutes and his temp was 99.9. She checked his belly and the bruise was outside the marked area the resident had made and a thin red line was on the outside edge of the bruise. The nurse again calls the resident. She comes in and checks again and note that his belly was swollen more as well. She calls the surgeon and he orders Valium to calm him and has the resident numb belly

and open him up about 1/2 inch to check for signs of infection. She seen none but did see a large sub- whatever hymatoma (again sorry not spelled write) She took a sample to culture. Sunday night went by without further issue. continued to be sore, Bob and I took turns sitting next to him and pushing him pain pump button every time he moaned. Monday the Surgeon comes in and says he will not discharge until at least the fast test comes back on the sample taken Sunday night. He said maybe we could take him home Tuesday. He checked the bruise and stated it was unusual to develop this large a sub- whatever hymatoma 2 days post op. He had no explanation for it. He continued hourly vitals and visual check of surgical site. Tuesday the fast test came back

no infection and was discharged. We got home and started back into as much a normal routine we could. We were hoping to be able to sleep in Wednesday, but because he was in the hospital Care Star had to make a visit, 7 AM Wednesday. I showed Care Star how we were taught to clean the surgical area and gave her copies of the information we received on discharged. She reminded me we would have to train our nurses. GRRRRR! We had requested for one of nurses to come to Akron Children's to learn how to do the Malone Flash, but was told this was considered double billing and they could not do it. I would have to train the nurses. This has not set well with me. I am not a medical professional and felt that if the nurses were not aware of this procedure they could be trained by those who are and they could have any of their questions answered by someone

that knew the answers. But I lost the argument. I trained Tuesday, Wednesday & Thursday nurse. All was going well. says he feels better after we are done with the flushing. He still was sore and move VERY slowly. But was happy to be home. Thursday morning he was mad again because the bus did not stop and pick him up. We agreed to take him to school for a visit. Than he wanted to stop at the foot ball field. We told him he could not because he was using his wheelchair and pushing it across the grass is to hard. But once he was strong enough to walk to the stop sign and back without being over tired we would take him to see the team. All was going great Friday. The nursing supervisor from TLC (the waiver agency we use) had to make a home visit because had been in the hospital. She wanted me to show her the

surgical area and walk her through the cleaning processes and explain the flashing to her. When I was cleaning him I noted that the temporary catheter was out more than it had been. I tried to push it back in to his belly button an and would come right back out. The nursing supervisor did not seem concerned about it, I figured it must not be a big deal, I mean after all she is an RN she should know. A little while later one on one aid came for a visit after school, followed by his teacher and another classroom aid. The school mad him a cool banner with every ones picture on it and laminated, a card, and some practice papers. His teacher took the time to look at the material we use at home with and said they gave her some ideas...we'll see!. It came time to train his Monday & Friday. Again I try to push the

catheter back into his belly and it won't stay in. It was not out all the way, just far more than what it had been since surgery. I showed her how to clean the wound area, and than explained the flushing procedure. But when I opened the catheter to the flashing bag no water would flow into the temporary catheter and into his intestine. I know now something is not right. I call the hospital and talk to the same resident that had opened him up Sunday to check for infection. She said we needed to bring him in through the ER at Akron Children's and they would be waiting for us. She suggested we pack our bags because if the catheter has become dislodged they will have to take him back into surgery. Bob goes to fill up the car, I start repacking, and nurses gives him a sponge bath and helps him get clean clothes on. She comes to our bedroom and says is bleeding. I go check and he has bled

through the one bandage I had put on. She changed the dressing and we called the resident again. She spoke to nurse and asked that we call her again when we are @ 10 minutes from the hospital (we live near Cedar Point Amusement Park) We get to the hospital and the resident checks out. Turns out that some stuff from the appendix worked its way out and had pushed the temporary catheter out some. It also prevent us from pushing it back it. She got the blockage cleared, it was deep in the belly button, (none of us me, Bob or any of the nurses seen it. another thing that I feel could have been address if the nurses went to Akron to be trained) She tested it to make sure it was flashing and it did. She said that the catheter was forced up against the wall and was in a position that it could not accept any fluid. All was okay and we were heading home at 10 PM. So now it is Saturday afternoon. is at the dinning room table putting together one of the new puzzles he has gotten over the past week. He has not had any pain meds today, and is walking much better. He is still mad he can not go back to school until the 18th. But we told him we are just taking a stay at home vacation and we would go do somethings. Okay I think I have caught you up on what has happened since surgery. The 2 things that stick out the most to us is how much better says he feels when we finish the flushing each night. He never complained before about not feeling well or hurting or anything. The doctors all said with as backed up as he was he should have been in considerable pain. But is one of those that do not recognize pain unless it is really bad. The other thing is my complete unhappiness in the fact that the

waiver would not pay for 1 of his 2 nurses to go to Akron and be trained by there staff on this. Hugs Becky Becky Mother to , 16, Autism, Epilepsy, Cerebal Palsy, MR, ADHD

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