Wednesday, June 9

Chemo Round 2, Days 1 & 2

Tonight I am updating for the last two days. Yesterday, Tuesday, was a rough day to say the least. Collin didn't have a restful night Monday night as I had hoped he would. I was hoping our nurse's theory about the Reglan would turn out to be the answer to what was causing the periods of incosolable agitation Collin was having, but Monday night he was awake a lot, despite three doses of Ativan and a dose of Morphine, and no Reglan. Collin looked completely exhausted all day Tuesday, but wasn't able to rest much. He did finally fall asleep for a few hours after lunch. During that time, I read a little bit about some of the drugs he was on, trying to figure out what could be bothering him. Thinking about the whole situation, and how the solution to these episodes was just to give him more drugs, some of which were recommended by a doctor that never even met Collin, and how every day changes were made based on discussions about my child that I was not a part of, I became very angry, and decided that as his parent, I had the right to deny any changes unless the reasons, possible side effects, etc. were discussed with me in detail first. I may not have an MD behind my name, but I am just as important a member of Collin's care team as any of his doctors and nurses, and I was tired of feeling like a bystander. I was frustrated that often there were multiple changes made in his care at a time, and was at a loss as to how we would ever figure out what the problem was with so many ever changing variables. I was also tired of being the one who had to deal with the hours of agitation long after the people making the decisions had gone home. I think the sleep deprivation finally caught up to me. My mom came in at lunch time, and I was in tears from exhaustion, fear about what Collin was enduring, and anger. When the attending physician came in, we told him all about what I was feeling, and that I was ready to take Collin and leave. We ended up spending over an hour talking to this poor man who I had just met the day before, and he asked lots of questions and went through a time line of information trying to figure out a cause for the episodes of agitation. He was going to do his best to get to the bottom of what was going on.

Soon after we were finished talking to the doctor, Collin woke up from his nap. Within a very short time of waking up, he started crying and screaming and rolling around in pain. No matter what I did, I could not console or calm him. He would reach for my hand, and then push it away as if it hurt to be touched. We ended up with two attending physicians, a fellow, and the nurse practitioner in the room during the episode. The episode lasted for over THREE hours. This poor child, who was exhausted to begin with, could not stop screaming in pain, despite being given Benadryl and Ativan that should have calmed him down. A dose of Morphine didn't help either. As the time wore on, I watched hopelessly and in anger as my child suffered and I wasn't able to help him, and no one seemed to know what to do. My Mom and a friend demanded that they figure someting out and come up with a plan, because there was no way this could go on. The doctors wondered if it was some sort of seizure, and called a neurologist to see Collin. This man was the rudest doctor I have ever met. He came in, took one look at Collin, and said with an attitude that conveyed that we were wasting his time, "This isn't a seizure, this is a kid who is unhappy," and walked out. I have never seen such a horrible bedside manner in my entire life. Collin's doctors then gave him another dose of Morphine, and he started to calm down. I tried to get him to sleep, but he still couldn't fall asleep. My Mom again pushed them to come up with a plan so that I wasn't left hanging if this happened again in the middle of the night. They decided to have a CT scan done to make sure that hydrocephalus wasn't the cause, so we went down to the ER (with his IV pole holding his chemo drugs being pushed along side him) at 8 pm for the scan. Afterwards, when the results were available, we were told there was no increase in cranial pressure that would be causing Collin pain. They ordered a higher dose of Morphine that I could ask for over night if Collin need it; I decided to have the nurse give the Morphine every two hours through out the night so that Collin could rest instead of taking the chance that he might wake up in pain. I finally got him to sleep, and after taking a shower, I went to sleep too. An hour or so later, Collin woke up when the nurse was changing his diaper that had leaked, so when she was done I climbed into his bed next to him, and we both went back to sleep. For the rest of the night, when the nurse had to give Collin meds, take his vitals, change his diaper, etc., she had to lean over me to do so, and not once did I even know she was there, that's how exhausted I was.

Collin had his last dose of Morphine at six o'clock this morning. He woke up a half hour later, and was his normal self; he nursed, wanted to play, etc. He ate some baby food for breakfast, and took a morning nap. His doctors and nurse practitioner came (at seperate times, and then together later in the day) to discuss different ideas about what may be causing Collin pain, and what the plan would be to figure out the cause. One theory is that the Methodone might be causing the rare side effect of increased intercranial pressure that may not show up on a scan; at this point rare means nothing to me since the brain tumor was also rare (and as I type that statement, I still cannot wrap my head around the fact that my child had a brain tumor!). Another theory is still Morphine withdrawal, since it took a higher dose of Morphine to calm him down. Another possibility is still seizure activity; we all felt that during the episode yesterday, before the Ativan was given, Collin was in such a state that he could not even acknowlege that we were there, but after the Ativan was given, he could focus on us even though he still was unable to calm down, and Ativan can stop a seizure. Unfortunately the rude neurologist was called after the Ativan was given, so he didn't see that piece of the episode. The fourth possibility was still the area of blood that the MRI last week had shown was present. Collin's neurosurgeon reiterated that based on the scan from yesterday and the MRI from last week, there was no indication of a large increase in intercranial pressure; however yesterday's scan did show that the area of blood at the surgical site that was on last week's MRI was new blood, which supported the theory that the blood thinner used during the stem cell collection (which was done the day before these episodes started) may have caused some bleeding in his brain. The neurosurgeon said it was possible that the blood could have been causing horrendous headaches similar to a meningitis headache, which will often cause kids to arch their back and neck, which Collin was doing during the episodes. The blood will eventually be reabsorbed, but in the meantime the pain can be treated with Morphine. If there is another episode, a lumbar puncture can be done to test the CSF pressure to see if there is an increase in pressure that is too small to show up on a scan, although this would be unlikely. In trying not to make more than one change at a time so that it is easier to tell whether something works or not, we decided not to make any changes in medication today, although we may want to take Collin off the Methodone soon to see if it helps. If he has another episode, we can give him Morphine right away to treat pain. If it is a seizure, Morphine won't help, and then we can have a neurologist evaluate him again before Ativan is given which could change some of the symptoms. To try to see if there is any unusual brain activity that may indicate seizure activity, an EEG, or electroencephalogram was ordered (apparently much to the annoyance of the neurologist). Since Collin doesn't flinch when his belly is pressed on, and the fact that he has so much interest in eating, it is unlikely that the pain is related to any GI issues.

The EEG was done early this afternoon. Collin was an angel as his head was measured, marked, scrubbed clean, and 27 little electrodes were glued, pushed, and then taped onto his head. Then he nursed and slept for the half hour procedure. For the last five minutes, we had to wake him up so a strobe light could be shined on him to see if there was any epileptic activity. Later, we were told that although the EEG was not normal, it did not show any seizure activity. It is not unexpected or concerning that it was not totally normal, since his brain is still recovering from surgery. But, just to be sure, Collin will have an eight-hour long EEG tomorrow, which should be interesting. At this point, my gut tells me the new blood at the surgical site is the cause of the pain, especially since the onset of these episodes was the day or two after the stem cell collection, but sometimes the only way to determine the cause of pain (especially in someone who cannot tell us where it hurts) is to rule everything else out.

This afternoon, the Speech Therapist tried some "dry crunchies" with Collin. She gave him tiny little pieces of graham cracker, which dissolves quickly. He immediately picked the pieces up, put them in his mouth, and chewed. He still has some difficulty moving the food with his tongue to the back of the mouth where it can be swallowed, but to help this along, she followed each tiny piece of graham cracker with a spoonful of pudding. He did very well, and ate with enthusiasm. It is so nice to see that since it has been a few months since he's been able to eat anything himself. He did get one piece of cookie stuck in his throat, which caused him to gag and vomit, but the Speech Therapist said that is normal, and his cough was good and strong and protected his airway, so she wasn't concerned. She gave me the go-ahead to try mashing some foods (noodles, banana, etc.) with a fork and offering them to Collin. Unfortunately, we didn't get to try that tonight because he had a few more episodes of vomiting, probably due to his chemo.

Collin is sleeping peacefully once again. Dare I say I hope it continues through the night?