Monday, May 2, 2011

Its Been A While

Well I think I set the record for longest time between posts, but I am just now getting to the point where I feel like writing again. Even now I am overwhelmed with the information I have to share, but I also regret not updating more often over the last several months because I miss not being able to remember the specific details. I hate that I might have forgotten one of the many small miracles that have taken place, but I hope that Gods glory will be revealed regardless. I am going to attempt to update since my last post which sadly was almost 10 months ago. I left off with Harrison having had his analrectalplasty which involved them creating an anal opening surgically. He had stopped taking a bottle or anything by mouth for that matter, his bilirubin was increasing, and he was scheduled to have tethered cord surgery. Well..that was July 31, 2010.
So I begin with August 18, 2010. This day was a scheduled colostomy take down surgery. On this day they were to close his colostomy and "hook up" his intestines to his new rectum. This surgery actually was supposed to be after the tethered cord repair, but his stoma from his colostomy was so prolapsed and bleeding so bad that the surgeon felt it was best to go ahead and do it now. PLUS, after seeing Harrison he realized that his KASAI was failing and that they really needed to start assessing Harrison for a liver transplant. Not the news I wanted to hear, but it was the truth I already knew in my heart. I can't express how much I love this surgeon. He immediately was on the phone with the Liver drs saying that they needed to come and work Harrison up to be listed for transplant. I thought this strange since he was a surgeon telling the Liver Drs what to do. But again, he was a strong advocate for Harrison and I loved him for it. I do believe God put him in Harrison's life for a reason and he has essentially been a guardian angel. As you read on in the future events you will clearly see why. Anyways, on this day, Harrison was brought in for the surgery and labs were drawn. His liver labs weren't great, but the surgery took place. Overall, the surgery went well. Harrison recovered pretty much on average time and was ready to return home within a few days. The surgeon checked frequently to see if the Liver team had visited and they hadn't. But on the day of discharge, the liver dr finally stopped by. She looked at him and said, "Has he always been this yellow and skinny?" Of course I told her he had gotten worse over the last month or so and she said his labs showed a high bilirubin but that we needed to get him to gain weight. Harrison was pooping normally and all looked good except for the liver numbers which they said they were still just watching since he had just went through another surgery. Of course, I knew things weren't great, but I was glad the surgery went well. So we left on the 25th of August and went home. All was well
until the evening when Harrison started screaming out and crying trying to poop. I had noticed that before we came home from the hospital that Harrison had suddenly stopped pooping as much, but I thought it was him trying to regulate his bowels. So after an awful night, I called the surgeon the next morning to tell about his night. They told me to give him a break from his feeds and that maybe it was gas and him still sore from recovery. Then as the day progressed Harrison began screaming in pain and was becoming more and more irritable and upset. I just sat and cried and rocked him. I knew something wasn't right but no one thought that but me. Finally I called the surgeon back in tears and he said to bring him in to the hospital because if I was crying then something was definitely up. (Did I mention I love this man)So 16 hrs after being discharged he was readmitted. I was terrified that Harrison had Hirschsprungs which is a whole other set of bowel problems no one wants to have. I mentioned this and they said, "well it is higly unlikely to have an imperforate anus AND hirschsprungs together, but I told them I knew of another family with a baby who had imperforate anus and was being tested for hirschsprungs. They looked at me and asked "well did she have it?" I told them I wasnt sure but I could call them. So I made my phone call as they drew labs on Harrison and took xrays of his belly. The mother of baby informed me that her daughters test was negative for hirschsprungs but of course I still was worried. The doctors came in and said Harrison had air in his intestinal track and it looked like a case of colitis but they werent sure why. The most common reason is infection so he was immediately started on IV antibiotics and stopped being fed. The next day they did a barium enema which showed an inflamed colon which only confirmed the colitis. His bloodwork showed infection in one sample but not in the other, so the continued his IV antibiotics to be safe. Since he could not be fed for the next 7 days that had to feed him through IV but it had to be a special IV that they call a central line which means it goes to the heart. Since it was a weekend and no one could put in a central line he had to have one surgically placed. This was a huge risk of infection, but he had no other options. So off he went the same day and had the line placed. Of course now he was being fed with something called TPN that affects the liver, but again he had no choice. The surgeon continued to contact the liver doctor who finally decided it was time to have him evaluated for transplant. It was such a whirlwind. I met with the entire liver team-the dr, the surgeon, the nurse practioner, the social worker, the financial worker,etc. They informed me of the process, did my social and psychological evaluation, and began testing on Harrison. After all was said and done, the transplant team assured me that he would be listed as early as the 1st of September, but they just needed approval from insurance of payment. WELL this is when the bombshell of ALL TIMES was dropped. Our primary insurance did not approve Levines for the transplant. We were all shocked. They approved many other facilites which meant Harrison would have to be transferred out. The closest facility was over 700 miles away. I was in shock. I just couldnt believe it. We had mentally prepared for a transplant, but not 700 miles away from all the doctors who knew him so well, or 700 miles away from my husband who would have to stay and work, and my daughter who would have to stay and go to school, and my mother who would have stay to care for her family. Not to mention that the estimated time of transplant was right around the time of my due date for baby #3! The transplant team even told me that I could appeal this decision, but based on prior experience with my insurance medical director, it would most likely be denied. I was unusually calm, but for some reason I just knew that things would work themselves out. I called the caseworker who had no idea it was even denied and I immediately began pleading my case. She had been in contact with me all along and knew of Harrison's complexity. I through out every thing i could think of and she said to let her make a few phone calls and she would get back. The transplant team agreed to help me pursue the appeal, but they weren't very hopeful. They agreed to go ahead and list him since his score was so high for listing. They said he was in the top 3 for their facility. Harrison was finally discharged on September 3 from his stay for colitis and we were still waiting to hear on the appeal from insurance. The following week Harrison had his 1st follow up in the liver clinic with the liver dr. She came in and began talking about how he had been approved for listing and that we needed to focus on him gaining weight. My mom and I thought she was referring the fact that he had been approved to be listed but wasn't actually listed yet. So we asked her to clarify and she said that morning the drs spoke with the medical director and Harrison had been approved to have his transplant. We asked I know like 30 more times that he had been approved at Levines and she said yes. Mom and I just cried. We were so thankful that this burden had been lifted and God had answered our prayers. We were again informed that he was in the top 3 of patients waiting for a transplant. So we left that visit excited about the good news. Later in the week, the insurance company called to confirm his approval and the case worker informed me that she had made sure that all of Harrison's information was sent directly to the medical director before he could deny services and that she worked hard to make sure it didnt get denied. I thanked her numerous times. Now we began focusing on what was to happen next. Harrisons tethered cord surgery was supposed to have been on Aug 26th but it got cancelled because of Harrison's colitis episode so it was rescheduled for October 21st. At this point, Harrison's jaundice was bad..he glowed..and he was having trouble gaining weight, and his belly was getting bigger but they still gave the go ahead for his tethered cord surgery. Considering all these factors, we continued to work with Harrison on his therapy, but he was no fan of food or anything in his mouth and he despised being on his belly or doing any hard work. But we kept on.