Friday, December 10 - Day +58

This week has been a busy one!

Monday Collin had his mediport put in. His stomach had to be empty before anesthesia, so I turned his tube feed off at 4:30 am, and made sure he had his meds and any clear liquids he wanted by 6:30 am. On the days where Collin can't eat in preparation for anesthesia, the rest of us make sure we don't eat in front of him since it wouldn't be fair to him. We checked in at the hospital at 9:30 am, and we were brought into a little room in the Same Day Unit where I changed Collin into a hospital gown and the nurse, anesthesiologist, and surgeon come see us, have us update medical information, sign consent forms, etc. It was the same room we were in a few weeks ago when the Broviac was removed, and Collin recognized it and remembered the little TV right away. He was perfectly happy to watch and play with the TV while we waited. I like to stay with Collin until he is asleep, so I put on scrubs and went with him to the operating room. This time I asked them to skip the Versed (a drug that makes kids drowsy and less anxious before a medical procedure) that was given to Collin before the anesthesia when the Broviac was removed; as long as I stay with him he doesn't get upset, and I was hoping he would come out of the anesthesia quicker and calmer after the procedure than he did when the Broviac was removed. In the OR I put him on the table and stayed with him until the gas put him to sleep. Later after the mediport was put in and Collin was taken to the Post Anesthesia Care Unit, I went to be with him, and he woke up as I got there. He was still a bit agitated for a while, but he did wake up quicker this time. We were moved into another room in the Same Day Unit, and once a chest X-Ray showed the mediport was in the proper place and Collin could drink some juice and keep it down, his IV was removed and we were allowed to go home. Despite being at the hospital for most of the day, everything went smoothly, and Collin didn't seem to be in any pain that evening at home. The mediport is a small round device that is implanted under Collin's skin on the right side of his chest. There is a tube on the back of the device that goes into a vein, just as an IV would, and stays in the vein. Whenever blood has to be drawn or medicine has to be given intravenously, a needle is put through the skin into the mediport to access the vein. It's much better than having to be stuck multiple times to have an IV placed, there are no tubes sticking out of the body that can become infected, and unlike a Broviac, you can take a tub bath or swim with a mediport.

On Tuesday Collin had an 8:00 am speech therapy appointment. The speech therapist is working on building a raport with Collin, and will be working on cognition and speech. Collin didn't want to complete the task the therapist was having him do, so he spent a bit of the session upset, but he eventually finished and proudly carried his stickers with him for the rest of the morning. Following speech therapy, Collin had physical therapy. He is getting better at lowering himself back to the floor after he pulls himself up to stand, and can cruise side to side at a raised surface. He is still walking with assistance, but not independently yet. Tuesday afternoon, we went back to Hershey for an ophthalmology appointment. The sutures from the lateral tarsorraphy had disolved, and Tuesday morning when Collin woke up, his right eye was open all the way. The abrasion is mostly healed, but the ophthalmologist wants to do another lateral tarsorraphy to protect the eye since it still doesn't close all the way. He wants the tarsorraphy to be more permanent, which involves abrading the eyelids so they heal together; then the procedure wouldn't have to be repeated multiple times, and can be reversed when the time is right. At the same time, he would inject Botox into the muscle to relax it and allow the eye to turn outward; then Collin would be able to see better out of the right eye while the left eye is patched. I asked why he doesn't just do the surgery that would permanently turn the eye out, but he had a few reasons why he doesn't feel the time is right yet. Despite his answers to my questions, I don't understand his reasoning, and left his office a bit frustrated.

Wednesday Collin had occupational therapy. He participated well, and was chattering during the session. He was also behaving like a normal two-year-old, throwing some little toys with a big grin in his face instead of doing what the therapist wanted him to do. It was nice to see him exhibit normal toddler behavior! Thursday Collin had speech, physical, and occupational therapy again, so we were on the go all morning.

Today Collin had a clinic appointment. His oncologist is going to set up another hearing test so that if the high dose chemo caused any low frequency hearing loss we can have hearing aids fitted to help with learning speech. She is also going to invite the ophthalmologist to discuss his plans with the rest of the treatment team (oncologists, neurosurgeons, radiologists, etc.) to make sure they are all working toward the same goals. I am going to reduce Collin's tube feeds to one can at night and then try to wean him off completely. At the same time I will start getting him to take his medicine by mouth so that once he doesn't get tube feeds anymore, the feeding tube can be taken out. Collin will have his next MRI mid January. Then Collin had labs drawn today, so his mediport was used for the first time. I had put Lidocaine cream on the area before leaving home this morning, so the area was numb. The counselor from Child Life used small toys and bubbles to distract Collin while the nurse put the needle in and drew the blood for the labs. I was nervous when I saw the needle, but Collin didn't even flinch! I was so relieved! He didn't cry until I tried to get him dressed again, because he didn't want to stop playing. The visit couldn't have gone better!

Everyone seems pleased with how well Collin is doing, and I think he's doing great! I find myself feeling over-the-moon happy, but then I get nervous that things are going too well, because I know that things could change in an instant, and just because he's doing well right now is no guarantee that the cancer won't come back. We need a cure!