Tuesday, May 19, 2009

Tuesday, May 19, 2009

Quote of the day: "There's nothing like a mama-hug." ~ Adabella Radici

I am writing tonight's blog from home. Peter sent me home because I am not functioning very well. I could not handle another night in the hospital without a break. I am writing with an intense migraine and stomach pain. So I apologize already if I am not as coherent as usual.

Monday night was very challenging. You may recall that Mattie's doctor wanted him to go through the night without depression, anxiety, and pain medications. She wanted to determine what was causing Mattie's mental state, the drugs or a reaction to chemotherapy. It was good in theory to conduct this experiment, because if we could have actually done it, it would have helped narrow down what was causing Mattie's impaired mental state. However, it was a very rough night, and thankfully the medical resident on call, Gisella, was not only extremely helpful but compassionate to our situation. She could hear Mattie crying and screaming, and things were turning sour quickly. Thank God she was willing to call the attending physician and allow Mattie to go back on all his medications last night. I know we wouldn't have made it through the night without her assistance. In between naps on Monday afternoon, I observed that Mattie would wake up and be very coherent and was not in a mental fog, just was in pain and was anxious. So I felt very compelled to demand Mattie's medications back last night. Being educated in the field of mental health helps me greatly, but I can also say that the gut feeling of a mother should NEVER be ignored. I knew Mattie was having a reaction to being overly medicated with psychotropic drugs, and indeed my feelings were confirmed by Mattie's psychiatrist today.

When Mattie woke up today, he was in fine spirits. Linda was with me, and Mattie and Linda went to the childlife playroom and started working on projects. I can't thank Linda enough for her help today. Denise, our social worker, and Jenny, one of Mattie's art therapists, also joined Mattie in the playroom as he was designing a car out of a cardboard box. Mattie was happy and animated, and I thought, emphasis on thought, we had turned a corner. While Mattie was playing, I went to lunch on campus with my parents. I want to thank all of you for writing to me and showing your support and asking about my mom. She is holding her own, but still has pain from her back spasms. It was nice to have lunch, but I have to say no matter what I do now, Mattie's situation weighs heavily on my mind. My mom reflected on how upset she was that this is happening. This is not what she wanted my life or future to be like. I understood. No one would wish such a crisis upon anyone much less their child.

I ran back from lunch because I wanted to meet up with Mattie's psychiatrist at 2pm. Dr. Biel saw Mattie in rare form today. Mattie was happy, coherent, and animated. So clearly he ruled out the need for a MRI of Mattie's brain. That is the good news for the day! Dr. Biel cut back Mattie's depression medication dosage, and it is our hope that this helps Mattie. I told Dr. Biel that Mattie's sleep cycle is very disturbed and I have no doubt this may have some sort of consequence on his mood. So today he prescribed melatonin for Mattie. Melatonin is a naturally occurring hormone and it is important in the regulation of the circadian rhythms. Many things in Mattie's life may cause his body from adequately producing melatonin, such as chemotherapy, anxiety/depression medication, and living in different environments (like the PICU). So we shall see if this helps, but one thing is for certain, I felt as if Dr. Biel was working with me collaboratively and is trying to improve the situation in some way.

However, the afternoon, was VERY difficult. Mattie was scheduled to receive MTP-PE this afternoon. Tricia, Mattie's wonderful HEM/ONC nurse, tried to administer Mattie's oral premedications. He needs these premeds in order to prevent a substantial negative reaction to MTP-PE. Mattie refused to take these oral meds from Tricia. So Linda and I were tasked with this. Linda and I tried everything to get him to take Tylenol and an antihistamine. What normally would take 5 minutes, took us OVER two hours today. Mattie was hysterical, crying, and at times inconsolable. We tried our hardest to get him to take the medicines, but were only half way successful. However, after this experience, not only was I wiped out, but so was Mattie. He fell asleep after this long battle. I continue to be amazed though by the medical community's lack of sensitivity and understanding for psychological issues. They are aware of what Mattie is going through, however, do they have strategies to help me, to alleviate these stresses? Definitely NOT! Their solution is to throw more medicine at the problem! To me psychological issues are so far out of the realm of their expertize and training, but what truly gets me is when the residents pretend to have some understanding of what they are talking about. I asked the medical resident today to page Dr. Biel, Mattie's psychiatrist. Dr. Biel was busy with another patient and couldn't come to observe Mattie. So the resident said she would give a report to Dr. Biel. I felt the need to correct her. I told her I did not need her to give a report to him, since I was more, if not better trained, to give him a report myself. I am always open to help and constructive feedback, but I refuse to sit back and have someone who doesn't have the foggiest clue give me a lecture!

Mattie slept for quite some time this afternoon, and therefore landed up having an accident while napping. When Peter arrived from work, he found me trying to change Mattie and clean things up at the same time. Neither were going well, because Mattie was hysterical. Fortunately Peter was there to help me. We changed Mattie and I changed Mattie's linens. While in this process, Dr. Myers (the HEM/ONC attending) came in and told us that Mattie has a central line infection. This is ALL I needed to hear tonight. This was like the last nail in my coffin. I have kept Mattie FREE of a central line infection for 10 months. I can't believe at the end of his treatment he comes down with this. They started Mattie on Vancomycin (which is usually an antibiotic used as a last resort). Vancomycin is very powerful, and I also hear that fighting a central line infection is very hard to do and to some extent it never really clears up. Not the best of news to hear as Mattie heads for surgery in June. Needless to say, I had to remove myself from the hospital tonight. I can't handle the whining, crying, non stop demands, emotional outbursts, and now this intense infection. As I said to Ann tonight, what have I done to deserve this? There is no real answer, but clearly Peter and I apparently haven't dealt with enough yet.

We want to thank the Hanley family for a lovely dinner tonight. Thank you for supporting us!
Peter called me tonight to let me know that Mattie had a reaction to MTP-PE again and needed demerol to counteract the side effects. So this makes about five negative reactions to MTP in a row. I have no idea what the night holds for Peter, but the fact that Mattie is on demerol means that he most likely will be knocked out. Which is a mixed blessing. It will help him sleep, but it will prevent him from taking any of his needed oral medications!

As we head into Wednesday, Mattie will be getting his bone density scan at 11am and then a follow up x-ray of his right ankle (the one with the suspected fracture). I just hope things get a little easier this week, because I simply don't have the stamina for much more.

I end tonight's posting with a message from my friend Charlie. Charlie wrote, "Another really tough day with yet another kink in the long road. I simply don't know where you find the internal resources to keep going with everything that happens. Monday's blog has the visual image of a ping pong ball going back and forth, sometimes almost too quickly to be seen. Mattie needing meds/possibly over medicated/then without meds; the changing/conflicting recommendations of surgeons about how to proceed with Mattie's needed lung surgery. It is a wonder that you can think at all with all that going on. And through it all you are Mattie's advocate, beacon and anchor to which he clings. In short, I think you are pretty amazing."