That's right, we had our first (and hopefully our last) emergency trip into Sloan this morning. Yesterday after Mike got up my mom noticed his eye turning. His left eye. The eye that started this whole mess. We watched it all day. It would turn in and go back to the midline. It would also come out past the midline which it didn't do when this all first started so I was hoping that was a good sign. As the day went on it would turn in more often so around 5:30 I called the night/weekend urgent care line. I was so worried about a shunt clog/malfunction that I knew if I waited until the morning I would be sick.
So, the operator got the pediatrician on call, we knew her from our inpatient stay, and the first thing she asked was, is he vomiting and does he have diarrhea. When I answered no to those questions she seemed to not be as concerned about a shunt issue. Once I ran down the issues we have been watching for 2 weeks though (the repeating the last consonants of some words, the coughing/sputtering when he sits up and drinks, the tremors in his hands) she seemed a little more concerned so she called the pediatric neuro-oncologist attending on call. She said that we had 2 options. Come into Urgent Care at that time and wait there until the morning and then get the scans done through there or we could stay home, keep him NPO (nothing by mouth) go into the Pediatric Day Hospital in the morning, get checked out and get the scans done that way. I opted for what would make Mike the most comfortable and we stayed home so he could sleep in his own bed and we left Rockaway at 6:45 this morning. My aunt is up from Florida so she was able to come with us. It really is a HUGE help having someone come with me every time we go in.
We met Dr. L at the PDH and he was very nice. He listened to everything, ran through all of my concerns and set up a plan. Mike would have a brain CT and then if it showed anything he would have an x-ray shunt series and a consult with neurosurgery. When he told me that the CT would show if there was increased swelling in the ventricles or progression of the disease I thought I was going to pass out. I was not ready for that but knew that if this was a shunt issue he needed to be checked and it needed to be fixed ASAP. Dr. L and the NPs worked things out with CT and anesthesia to get Mike on the schedule as soon as possible this morning, especially since he had been NPO since midnight. Mike was able to get on the schedule at 10:20 this morning. So off we went to get his port accessed, blood drawn and put on IV fluids and then we headed down to the CT floor.
The anesthesiologist came down to the CT floor with a nurse from pediatrics and we were ready to go at 10:30! I brought Mike into the CT room and held him while they put the propophol (sp?) into the tubes from his port. It took all of about 15 seconds for him to be passed out. The CT took only a few minutes and then we went back upstairs to the PDH to wait for Mike to wake up. He slept for almost 45 minutes so I was going nuts waiting for him to wake up so I would have something to do while I just waited for results. When he got up one of the nurses brought him out to me and I walked him back to the bed we had in the PDH and he slept on me for about another 1/2 hour. When he got up he was asking for his DVDs in true Mike fashion! LOL I ordered him eggs, Cheerios and ketchup for lunch since he hadn't eaten yet and we waited for results. Finally, after probably only about another 90 minutes but what felt like 90 days, Dr. L came into the room and told us that everything looked ok. He said that there was no more increased swelling of the ventricles and that the masses had not changed so that was a really good sign!! Unfortunately, the down side is that all of these issues may be related to one of the chemo drugs. I e-mailed the neuro-oncologist in charge of Mike's case when we got home to ask him a few questions. He agrees with me about possibly changing the dose but feels that with only 2 weeks left of the induction period we should stick with it for these 2 weeks then wait for the MRI & spinal tap results in January during the off weeks and discuss it then. I knew from the beginning that changing the dose of any meds would be a problem in the induction phase so I think I am ok with the last 2 weeks and then figuring it out from there. We will see what happens after we go in for chemo tomorrow.
Anyway, that's the story from today. I am so happy with the fact that nothing seems wrong with the shunt and that the masses haven't gotten bigger! I feel like we really may be on the right track with these meds! Please just keep hoping and praying that I am right!!
Thanks to all of you for your support and prayers! I will update after we get home from chemo tomorrow.
Love to you all!!
Monday, December 22, 2008
Posted by Chrissie at 4:48 PM