The day was hectic as ever. I had an appointment this morning and then ran back to take Jaden to clinic at Children's Hospital Oakland. It was our initial consultation and both Jaden and I were apprehensive. I noticed the difference the moment we walked into the Day Hospital, although Jaden was a little more vocal than I was. The facilities were definitely in need of updating. Jaden was excited to see the TV and the PS2 in the isolation room, however when he couldn't get either to work and found no games with which to play (not to mention his remote control failing to function properly), he let out a loud "This place stinks!". I tried to convince him that it would get better and we just happened to be in a room where the PS2 controller was not working, but it didn't help matters much. Jaden threw himself on the bed (which was archaic in its controls and the bedding was also showing it's years of use) with a big huff and a furled brow.
Even though the facilities may not have been as nice as those at Duke, the medical team was definitely very patient. Dr. Bindu, one of the three Attendings, came in and introduced herself. She said the purpose today was to get to know more about Jaden. She was impressed with the information Duke had sent over and even more impressed with our decision to go there. Once she learned that we had utilized Pre-Implantation Genetics (PGD) to conceive an HLA-matched sibling for Jaden's transplant, Dr. Bindu was even more excited with me. She asked me several questions about my decision to go to Duke and then told me that there were very few patients as educated about Jaden's medical needs as I was and that we had done all the right things to ensure Jaden had the best possible chance of success with his transplant. She went on to say that Duke and Dr. Kurtzberg's cord blood transplant program was the best in the country and that she was thoroughly in awe of Dr. Kurtzberg's work. Apparently Dr. Kurtzberg had multiple clinical trials running nationwide and was at the cutting edge of transplant medicine. This made me feel so validated in making the decision to go to Duke and I told Dr. Bindu how impressed I was when I spoke with Dr. Kurtzberg during our initial phone conversation.
Not much took place today in clinic. Jaden's port was accessed and he had a major meltdown stemming from his fear of the needle. The nurses were supportive, but not quite at the level of the Duke team at comforting Jaden. Okay, I hate to compare, but when you've been at the best, it's hard not to notice the differences! He openly told them that it hurt more than it did at Duke and that he was not happy with any of them. This may have been due to the fact that the EMLA cream sat on top of his steri strips so I'm not sure it was absorbed completely into the skin.
Regardless, we got through it with lots of tears and a command to not speak while the port was being accessed. "Two words: Don't talk! Do you get it?" Jaden screamed as tears rolled down his little face. I was holding him in my arms as his hands clutched mine. The labs were drawn, including a culture of the port, and we moved on with our visit.
Dr. Bindu examined Jaden and said his chest sounded like wheezing and crackling. I told her there was a baseline crackling that Dr. Prasad always referred to, but that we needed to follow-up with a pulmonologist long term for Jaden. Dr. Prasad was going to initiate this request. Dr. Bindu then decided to get a chest x-ray so they had some baseline information, even though I told her that Duke had records galore when it came to chest CTs and x-rays. I also told Dr. Bindu about getting a physical therapist involved and she said she would make the recommendation.
The doctor then told me about protocol at CHO. If Jaden developed a fever again of or greater than 100.4, I would need to call in and more than likely he would be admitted for the standard 48hrs while IV antibiotics were administered and until the lab cultures returned. I found it odd that even if Jaden needed antibiotics in clinic, they would need to be administered on the unit. Dr. Bindu said they weren't taking any chances since Jaden's immune system was not completely reconstituted yet. CHO would be drawing their own labs to see how these cells responded to various chemicals (simplified wording for what Dr. Bindu described--I guess she assumed I had medical knowledge when she went into in depth description of the types of cells used as controls, etc.).
Even with the old-school radiology (films) department and the dilapidated rooms, the one thing CHO had over Duke was food delivered to the room while we waited. Jaden received a nice lunch of a hot dog, Goldfish, chicken noodle soup, water bottle, etc in bags that resembled those of a certain fast food chain Jaden loves to frequent. He was actually a bit disappointed to learn it was not what he had imagined, but I was impressed that he actually got the bag lunch (I guess I notice food more than most people--definite brownie points for this effort!).
Since Jaden takes his FK-506 at 9am, we were not able to draw a level today. I was to bring Jaden back on Wednesday morning for this set of labs. I asked if we could come to clinic on Monday mornings moving forward, so we could take care of all the labs and the clinic appointment at one go round and the nurse happily accommodated my request.
The nail in the coffin for CHO as far as Jaden is concerned was when the nurse brought in the "duck masks" for Jaden. These were the same ones I wore overnight during Jaden's Ribavirin treatment at Duke and they are not comfortable. The nurse told us that CHO recommends these masks over Jaden's little Mickey Mouse ones because they actually filter out the air and don't just block it from the front like his current ones. Jaden would be required to wear it any time he goes outside, even if no one is around. Jaden's response "I guess I'm not going outside anymore!". Needless to say, he was not pleased with his new clinic and couldn't wait to get out of there.
We finished up at CHO and I took Jaden home. I swapped out the kids in the driveway so I could take Devin to his Tae Kwon Do lesson. I'm doing my best to pay special attention to my oldest and to make up for some lost time. Once the lesson was complete, I dropped Devin off and picked up Gia, who now screams when she sees me pick up my purse and keys. I had asked the boys for their dinner preferences for the week so I could do a grocery store and Trader Joe run and stock up. I brought Gia along to get her out of the house and show her I wasn't leaving her yet again.
Of course, social butterfly that my little one is, she waved and said "Hi!" to everyone at each store. She had a blast and we got home a little later than I wanted. Mom had made the boys their taco dinner and I plated it up for each of them while I took Gia up for her bath. It was then bath time for Devin. I was able to snuggle with him for a bit and calm his fears about some standardized testing in school this week. He always over-thinks things and was concerned about his current teacher letting the class know that these tests are evaluated by the teachers in 5th grade to see where students should be placed. I had to assure Devin that he would do well and that he just had to focus on not making silly mistakes. I tried to downplay it and assure him he'd do fine.
It was then back downstairs to give Jaden his night time meds and eat dinner. He stayed up with Guri and watched some sports as I caught up on email and finished my blog. It was an exhausting day overall, but I'm hoping we'll all soon get into the rhythm of things. I've got to figure out how to run this house like a well-oiled machine. Right now, we have lots of squeaky parts!
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