We had a really good and normal school year, with Olan getting ready to finish 5th grade. Plans were already being made for summer break. Swimming, hiking, trips to Splash Country and a deposit had been made for his first Boy Scout Summer Camp. Everything seemed to be moving right alongÖ.until.
Olan had complained about his bottom hurting. We thought that with the hot weather that he had developed a heat rash. When over the counter medicines did not help we made an appointment with the pediatrician. He gave us a prescription for some ointment. When another week had gone by and the pain was even worse, we made another appointment with the doctor. This time when he examined Olan he noticed something right away and I could tell something wasnít right. He told me that Olan had an abscess and then showed me the spot on his bottom. There were a couple of ďholesĒ in the skin and a watery discharge. He then left the room to get supplies he needed. I had no idea what was happening. The area was cleaned and some gauze was put in place (for the discharge) and a prescription for an antibiotic (thinking there was an infection of some kind). He told us to come back in a couple of days. We returned to the doctorís office as told and saw the nurse practitioner (the doctor had left for vacation). She looked at the area and told up she wanted us to go to the emergency room at Childrenís Hospital.
What a shockÖOlan had never had anything worse than a cold or sinus problem. And she was telling us to drive to Knoxville to the emergency room, and they would let them know we were on our way. We drove home first and told his dad what the nurse had said and we all got ready to go. Now we were all worried and still didnít know what was going on and afraid of thinking about it. When we got there the doctor came in to examine Olan. She then told us that she wasnít sure what it was and would refer us to other doctors, specialist, there at childrenís. One doctor was a surgeon and the other was GI for Kids. This started our quest to find out what was going on. It was originally treated as an infection, with us going to the surgeonís office and then to a doctor in Maryville about every week for them to check to see if the area was healing. No improvement. At some point during the visits, the ďholesĒ on Olanís bottom had become one large opening about 1 inch long. It was as if someone had cut a perfect line and opened the area up. The surgeon suggested that we check into Cincinnatiís Childrenís Hospital, that she was out of ideas of what to do. We went to others doctors to see if they could help or have any ideas.
Back to school
We decided to go back to GI for Kids and talk to them about what had been happening over the past months. We once again saw Dr. Al-Tawil, and this time he said we needed to go ahead and do a colonoscopy and the possibility of Crohnís Disease. We really didnít know anything about Crohnís , so we started looking on the internet for information. Everything we read was upsetting and difficult to understand. Olan didnít have some of the symptoms they described and had only recently started losing weight, just the spot on his bottom.
The time for the colonoscopy came and I took off from work to help Olan with his day of prep. So worried about how he would deal with it. Stories from well meaning people did not help with the worry, grown-ups who could not go thru what I was asking a 10 year old to do. Olan was amazing, never complaining about what he had to do. We got up the next morning, my daughter was taking our other son to school, and we headed to Childrenís Hospital. The whole time telling him that everything would be over by lunch and that we would stop on the way home anywhere he wanted. We got checked in and waited. Family was there with us, nobody wanting to think of what it could be. Then there was Dr. Al-Tawil calling us to a private room to give us the results. It is definitely Crohnís was what he told us, and that he had sent off samples to be tested. Shock set in, the doctor was talking about the thing that we had not let ourselves think about. The nurse was trying to give us a packet of information about things we needed to do, information about the disease and Dr. Al-Tawil was telling us that Olan would be admitted to the hospital for at least a week if not more. The abscess was actually a tunnel called a fistula, caused by the Crohnís. Everything was a daze, I was crying, saying that Olan was such a good boy, this couldnít be happening. Sitting there with Wendell, grandparents and my sisters, with the world around me spinning, everything a blur. One thing I do remember is Dr. Al-Tawil telling us not to worry, everything would be ok now that we knew what we were dealing with and that he would take care of Olan just as he would his own child. They told us that we needed to be very calm and not to let Olan see us upset. He was back in the holding area, laying there still groggy. The first thing he asked was if he could get ready so that we could go home, and we had to tell him that he had to stay and was being admitted. Asking him if he remembered the doctor talking about Crohnís and that they had found that was what he had, telling him that he had to be at the hospital for awhile so they could help him. Then they rolled him over to his room. Olan would be on total gut rest, the doctor told us. We had no idea what this meant. Olan would need to get a pic-line, we had no idea what this meant. We would need to talk about Remicade treatments and when they would be started, we had no idea what this meant.
Every day we learned something new. No food, drinks or even ice chips were allowed, that was gut rest. All of Olanís needs would be provided thru his IV tube. We stayed with Olan everyday with Wendell only leaving late afternoon to pick up Garet from school. He would then take Garet back to school in the mornings and drive back to the hospital. If possible he would bring him down to spend some time with his brother, and on the weekend Garet came and spent the night. How hard it was to sit there and know that Olan couldnít have anything to eat or drink. The guilt when you would get lunch or dinner, sneaking out of the room, to grab something as fast as we could, trying to never let him see us eating or drinking. He was so good about this and never complained though you could hear his stomach growling. The pic-line was put in, this was a stronger IV that could be left in for extended periods of time and worked better for what Olan needed. He was sedated for this. And his first Remicade treatment was given, one of the treatments for Crohnís. We also found out that these treatments would be needed after we were released from the hospital. As for the abscess on Olanís bottom?? the abscess that had been with us for months with no show of improvement?? Two days after his Remicade treatment you could already see a remarkable change, and by the time we left the hospital (one week), it was 90% healed. On about the 4th day Olan was finally able to have something to drink, the next day some soft food and finally some regular food.
Finally, time to go home, after living at the hospital for a week. The picc-line had been removed. Prescriptions were written, visits from the dietician with doís and doníts about how and what Olan should be eating from now on, and finally discharged.
So happy to be going home, but with a whole new set of worries. And guilt over what had happened. Was there something we could have done differently? Was there something we had done wrong?
Settled back in school and feeling much better. One day Olan mentioned that his hip was hurting. I thought that he had overdone it at school. More days went by and he still mentioned the pain in his hip and lower back. The doctor had told us that if anything came up to call and let them know. We decided to call and tell them about Olanís problem. They wanted him to come in to the office. We both went with him thinking we would be in and out before lunch. We would be seeing Jackie for the appointment. She came in asked some questions, and check Olan. She said she would be right back and left the room. Five or ten minutes later she came back in and told us that we would need to take Olan over to the hospital, she had his admission papers ready and that as soon as they could they would be taking him down for an MRI. Her concern was that there was another abscess, fistula, tunneling its way thru like the one he had on his bottom. I saw Olanís face drop with the news. This had never crossed our minds. If the MRI didnít show anything we could go home. Once again we were in shock, once again being admitted to the hospital. They were ready for us and got us settled in a room. Right away they were there to take him down for the MRI. We were allowed to go and stay in the room with him. We had no idea about the procedure. They gave Olan headphones to wear with music playing and got him settled in the machine. We had two chairs near the front of the room. Then the noise started, really loud, jack hammering noise. Finally over, they took us back to the room. In probably less than 30 minutes Dr. Al-Tawil was there. He came over as soon as he could to give us the results himself. No going home today, the MRI showed an infection in Olanís back, probably from the Crohns. He told us that this was just a little bump in the road, that he would take care of it and would be bringing in some other doctors for more information. There was an infectious disease doctor, and an orthopedic doctor because the infection was in the bone. There was no way to get a sample of the infection because of the location close to the spine. The infectious disease doctor came up with a plan to fight any kind of infection that it could be. Another picc-line would have to be put in and antibiotics given on a regular schedule. With this done we settled back in to the hospital and to the schedule of antibiotics. Before we would be able to go home, we would need to be trained on administering the medicine at home thru the picc-line. This would be for six weeks at least. The nurses worked with us and got us trained. I remember that the hospital had put up a paper turkey on our floor for Thanksgiving, you could mark the feathers with things you were thankful for. Olan marked his feather that he was thankful for Dr. Al-Tawil. Finally after a week we were able to go home. We gave the medicine in the morning before school, this took 30 minutes. Another one after he got home from school, this time with two different antibiotics, taking one hour. Then again at 11:00 at night, taking 30 minutes.
December 23, 2010
Finally the six weeks was over and it was time for another MRI to check to see if the infection was gone. Good news this time, just in time for Christmas. The picc-line was removed after Christmas.
Back to school after Christmas break.
We have settled into a routine now, with treatments and medicine, a change in diet and how we eat.
Back to soccer games and finally getting to attend Boy Scout Camp in the summer.
And prayers every day for continued health and thankful for such a wonderful group of doctors and especially Dr. Al-Tawil for everything that he has done for Olan and our family.