Max and I left for CHOP at 5:30 am and got there a little bit before 7:30 am. We beat everyone to the oncology floor but Max found a book and played with the Thomas the Train set that they have setup. We met with the nurses in the oncology unit and talked briefly about what would be happening. There was some confusion as to how Max would get today’s chemo treatment but we got setup so that they drew a little blood from his middle finger with just a prick test and then we headed down to the Pediatric Outpatient facility to have his port installed. Max got his does of Versed at about 9:20 am which made him very thirsty but he was able to focus on Dora and Blue's Clues until about 9:35 am when they started the IV in his hand. He whimpered a little bit but he really didn't think it was too big of a deal.
The surgeon came in and explained how the port would work. His explanation was very helpful. He explained that they would make two incisions, one on his chest below the collar bone and another by the jugular vein in his neck. The run the line from the lower incision up to his neck and then back down to a vein by his heart. The port will be on the right side of his chest (of course, I had him practice with a dressing of gauze and first aid tape on the left side!). The bump is very small. A woman whose daughter is sharing the recovery room with Max has breast cancer and she was willing to show us her scar and the bump. The scar is actually more noticeable. The doctor explained that the port is NOT permanent but could typically be left in place for a year or longer. They would not leave it in forever because of the risk of infection but if he needs it for an extended period they may have to pull the existing port and put a new one in later. Time will tell.
The risks involved in today's port placement are infection, damage to a vein, an air embolism. The doctor explained the steps that they took to minimize these risks by using a sterile techniques, an ultrasound and fluoroscopy to guide them inside Max's chest, and extremely small needles.
Max was taken down the hall just before 10:00 am is expected back in about an hour. They believe it will take about an hour for him to wake up and then we will head up to oncology for his first chemo treatments. So far he has been a real trooper. He actually thought getting his finger pricked to draw blood earlier was a little ticklish.
Max didn't come back until 11:40 am. They said everything went fine. He was still asleep but stirred when they took some of the tape off of him and hooked him up to the monitoring equipment in recovery. He went right back to sleep though. The dressing by his neck is fairly small. The nurse said that he has some liquid skin and some butterfly bandages there. He’ll need to keep the dressing on for 2 days and leave the butterflies on until they fall off. She said it was okay to leave the dressing on longer if he is likely to pull the band-aids off. The dressing where the port was placed is somewhat larger and will need to remain in place for 7-10 days. That has internal stitches which will self dissolve. The nurse said he is pretty thin so there will be somewhat of a bump in his skin. She also said that the numbing cream will make it less painful for the needle stick but that he’ll still feel it go in. Right now he is sleeping and they expect him to wake in about an hour when we’ll take him back to oncology to start his treatments. They said that we can use a wheelchair for that trip because he’ll still be groggy.
Max finally woke up enough to drink a juice box and eat some cheerios at 1:30 pm. It took a while to get him unhooked from the IV and get him dressed. He wanted to make sure he was going to see the metal ball display in the lobby and play with toys but he is essentially completely drunk. We got him a wheelchair to come back to oncology and met with Dr. Belasco to discuss some things before treatment. She said that any hair loss would be temporary. She also corrected a misunderstanding about deep tendon reflexes – those problems will reverse themselves once treatment stops. We’re supposed to call them with any issues at all so that they can keep Max free from any issues related to his treatment so that he does not start to see it as a problem. This week he has been asleep but in the future he should be able to play with things here.
Dr. Belasco said she had consulted with a neuro-psychologist and it was her opinion that he should have a full neuro-psych profile because he may not have Aspergers but something related to the NF-1 which is very commonly associated with learning disabilities, social problems, etc. Much like Aspergers. She said to try first with the school but that CHOP could do it if need be. It needs to be done by someone familiar with all of the diagnoses and would different than the normal school test which is geared towards IQ and attention problems.
Dr. Belasco also suggested contacting the Commission for the Blind which is a lot like Early Intervention but geared towards addressing Max’ visual problems. They would be able to make suggestions that would improve Max’ learning at school This could be as simple as where the teacher should stand in relation to Max to getting him any mechanical aids that he needs. She thought that they might suggest that he learn Braille as a second language – if only to help him educationally since he already has exposure to Spanish. That was just a thought that she had, she said that they would be the best source of information and is yet another resource that we can try to tap early for Max before it becomes an issue. Her greatest concern educationally was that he continue with special instruction for Aspergers but finds out later that something else is the cause. She said it is not urgent but the neuro-psych evaluation should be done.
They gave me a sample of the cream that will be used to numb his port and told me that it could be put on in the parking garage. It only needs 15-20 minutes to be effective. There could be an issue with skin irritation if it is left on for longer than 90 minutes. If we forget, there is a spray that can be used right before hand that works immediately.