Thursday Seth was scheduled to have his intrathecal chemotherapy. He is so far behind on these we have been anxious to get this started using the ommaya reservoir that was placed. Earlier in the week there had been talk of still going to the operating room and being sedated due to the fluid collection making it a little hard to see where to actually place the needle. On Wednesday the fluid collection seemed to disappear. and I was elated thinking we could push forward using the ommaya and get it done today and maybe get out a day early!! I asked Dr. Chi if we would be able to use the ommaya and she said they would have to asses but we were still holding onto the OR slot on Thursday. Dr. Wright Seth's main oncologist came to see us on Wednesday because she would be performing the procedure. She was surprised to see how much the collection had gone done and was hopeful she could do it without sedation. Luckily, Thursday came, the collection was still down and Dr. Wright was successful using the ommaya! Thank goodness because we would have hated to put him through an unnecessary surgery.
Seth was discharged on Thursday and we headed home about 2pm. We luckily didn't hit any traffic and he slept the whole way home. When we got home I noticed his onesie was all wet near his G tube site. They had been pretty generous with the bacitracin application so I thought maybe it just leaked out so I changed him and within 10 minutes his shirt was soaked again. We called and spoke to the nurse practitioner of our usual floor at the hospital and she said to try and get the visiting nurse to come take a look otherwise he would have to go to the emergency room. Unfortunately, the visiting nurse couldn't make a visit that day so we headed back to the ER at Children's after being home for roughly two hours. Seth's magnesium levels have been low or borderline so we wanted to make sure he was getting all his meds as well as nutrition. The whole reason we opted to go for the G tube was because it was supposed to be easier!!
The ER doctors tried to send us home and to follow up with the GI clinic the next day but we were rather insistent that we wanted Seth to stay because we weren't comfortable with him coming home because we didn't know if he was getting his meds and nutrition if it was leaking. Seth was admitted to 9N later that evening to be observed overnight. Come to find out the balloon that holds the G tube in didn't have enough water in it after being check by the GI team on Friday. We did check it at home and it had enough so we're not sure what happened or why they didn't check that in the ER.
Seth was kept another night for more observation and to ensure it wasn't leaking any longer. He was schedule to be discharged on Saturday.
Saturday morning Steve called and told me Dr. Chi said we have two options: we could go home and come to clinic on Monday hoping the insurance company would approve his admission the same day otherwise we would have to wait until possibly Wednesday or we could stay in the hospital for the weekend and begin his treatment Monday as planned as long as his platelets came up to 100. They were 89 on Friday so we were all fairly confident they would be at 100 for his Monday labs. Due to all the delays we've already had with Seth's treatment we decided to stay through the weekend so he could start week 10 of his chemotherapy regime on Monday after having his scheduled kidney test. It boggles my mind that the insurance company would deny an admission when they know his course of treatment and needing approval for every admission when they know it's coming.
Dr. Chi said that if we stayed we could have a day pass and Seth could get out of the hospital for some of the day. I headed into the hospital Saturday night to relieve Steve who had stayed since Thursday and we planned for a fun family day Sunday.
Sunday was a low key day at the hospital. We were just waiting until Monday to get things started. Dr. Chi came to see us and told us to enjoy some time out of the hospital. Steve and Sadie picked us up around 10:15 and we headed to the aquarium (the hospital was nice enough to get us passes). Unfortunately, Sadie wasn't too interested in the aquarium and it was super packed so we decided to head outside and over to Faneuil Hall since it was a beautiful day. Great decision!! They had a street performer named Pogo Fred which we all enjoyed, grabbed some lunch to eat outside, rode the carousel a few times and ended with some ice cream. Couldn't have asked for a better day other than having to return to the hospital.
On the ride back over Seth was getting upset and you could hear Sadie in the backseat saying "It's ok Seth we'll be back at the hospital soon." Melts my heart and breaks it at the same time. Back up in Seth's room we enjoyed decorating a cookie and cupcake, chocolate milk, many walks around the floor, and even got some new red sox hats from child life. Steve and Sadie headed home around 6pm and Seth and I settled in for the night.
Monday morning I was anxious to hear what his platelets were. I saw the nurse around 6am and asked. She said everything looked great and his platelets were 70. My heart sank ... and I said what? they need to be 100 in order to start chemo today?!?! I pretty much knew at that point we were headed home. She paged the doctor and we would hear later. We headed downstairs to get some breakfast and to nuclear medicine to start his kidney test. I didn't want any delays since I had a gut feeling we were going home. About 9:30 the doctors rounded and just as I suspected we would be going home. The plan was to be discharged later today once his kidney test was done and VNA would check his labs on Sunday to see if we were ready to start next Monday. While we are disappointed for yet another set back we will take advantage of this week home together as a family.