Friday, February 13, 2009

Friday, February 13, 2009



Quote of the day: "To get through the hardest journey we need take only one step at a time, but we must keep on stepping." ~ Chinese Proverb


Today, Peter and I are simply and utterly exhausted. At around 2am, I woke up because I heard Mattie whimpering. He was doing this in his sleep. When I looked at our output chart, I realized Mattie hadn't used the bathroom in over five hours. So I woke him up and asked him if he had to go. He decided that he did, but while he was next to me, I could tell he was hot. Ellen, our wonderful HEM/ONC nurse happened to come into the room around this point, and I told her I thought Mattie was hot. So I took his temperature and low and behold, Mattie was running an 103 degree fever. Ellen mobilized and called the resident on call. We then gave Mattie Tylenol. The issue is Mattie can not seem to shake his fever, he has had it since Wednesday. This is a first for us, because normally with neutropenia Mattie loses his fever after 24 hours. Not this time! So the resident ordered another set of blood cultures on Mattie. Peter and I have had two nights like this in the hospital back to back, and without some consistent sleep, functioning is becoming harder. The Tylenol did help Mattie, and when he woke up this morning he appeared to be fever free.


The day was progressing along well. That should have been a clue, it was the calm before the storm. Dr. Abu-Ghosh came to examine Mattie and asked how the morphine was helping Mattie's mucositis. It is working quite well so far, and she was pleased with his progress. Mattie qualified to get his MTP-PE infusion today, he was scheduled to have it yesterday, but Mattie was too sick and was unable to take any of his oral pre-medications before the MTP administration on Thursday. So the MTP infusion was postponed until 1:30pm today.


Julie came to visit us today. I met Julie at Mattie's preschool and we became good friends. Julie brought me a lovely lunch and two major hits for Mattie. She brought goldfish, which he started to crave last night (mind you I searched the hospital for goldfish, and there were none to be had last night!) and cherry Italian ices. Mattie literally ate a half bag of goldfish today and a half of an ices cup. Julie wanted to give me a break, but Mattie was clingy today and I was unable to leave the room. None the less I appreciated Julie's efforts. Linda visited Mattie while Julie was visiting, and she stayed with Mattie for a while and continued working on designing his cardboard box airplane. While Linda was with Mattie, Julie and I stepped out into the hallway to have lunch. However, even with Linda, Mattie had me come back a couple of times. He has to know where I am at all times! Thanks Julie for a nice lunch and visit!


Linda stayed with Mattie throughout the MTP-PE administration, which he handled beautifully! I had the wonderful opportunity to visit with Brandon and his parents while Linda was with Mattie. It is always nice to reconnect with this special family. Brandon continues to be in a lot of pain from his appendectomy. I could tell Brandon wasn't himself today and he is experiencing a great deal of nausea. So Brandon did not visit for very long today. When I joined Mattie and Linda back in his room, he had 15 more minutes of his MTP infusion. After which, we helped Mattie into his wheelchair, put a mask on him, and brought him to the playroom for his special time! This is the first time in three days he has left the room! Jenny, Jessie, and Denise came up from clinic to share in this special time. While in the playroom Mattie completed his airplane and then designed a special beach scene for his friend the cockroach. We have a LARGE model magic cockroach, and for some reason Mattie thought the roach needed his own beach front property today. Totally gross! I told him when the cockroach is leading a better life than me, I have a problem with this. I took a picture of the plane (which is a smaller version of his Sloan Kettering creation) and the cockroach at the beach.


left: You may notice a clay ball next to the roach. If you look closely the ball has a drawn picture of a roach on it. Mattie thought the roach needed his own personalized ball!



right: Note that the plane is made from found boxes in the hospital. There are boxes of all sizes. He made the propeller for the plane out of thermometer covers and the red part of the propeller came from Mattie's Tylenol syringe today.

















While we were in the playroom, Mattie said he felt cold. So I went back to his room to get him a second blanket. I wasn't gone no more than a couple of minutes. When I got back, Mattie was shivering. Now normally most parents do not panic when they see their child shiver, but since Mattie just had MTP administered that was indeed grounds for alarm. I left the playroom to track down Mattie's nurse. I couldn't find Laura, but I found Miki. When Miki heard what I told her, she literally ran out of the PICU to find Mattie. Mattie was with Jenny and Jessie, and in a bad way. Within minutes Mattie was shutting down. If I was an observer, I probably would have taken the time to be scared, but my main objective was to get Mattie the narcotic, Demerol. How did I know how to treat this? Well Sloan taught me one thing well. I know how to assess for rigors. Why, because after Sloan administered MTP to Mattie the first time, they sent us back to our hotel and within 45 minutes Mattie started shaking like a leaf. Peter and I literally managed Mattie's rigors alone without medical help. Seems unethical to me, but that is for another blog. Any case, today, I recognized the rigors right away. Just so we are on the same page..... Here is some google information on rigors. A rigor is an episode of shaking or exaggerated shivering which can occur with a high fever. Rigors occur because one is effectively shivering in a physiological attempt to increase body temperature. It is an extreme reflex response which occurs for a variety of reasons. It should not be ignored as it is often a marker for significant and sometimes serious infections (most often bacterial). It is important to recognize the patient's description of a rigor, as the episode is unlikely to be witnessed outside a hospital (OKAY, not in our case!!! We have seen it and lived it outside of a hospital setting!), and to be aware of the possible significance of this important symptom.

I wheeled Mattie out of the playroom and followed Miki back to the PICU. With me were two residents, our HEM/ONC resident, Elaina, and a senior PICU resident, Dr. Jung, who I met back in August. Dr. Jung has helped me many a time with Mattie, especially when he experienced allergic reactions to medications. In addition to Elaina, and Dr. Jung, I had the PICU charge nurse talking with me. Needless to say I had a team of people following me to Mattie's room. They were trying to assess what to do with him, because at this point he was also writhing in pain. He was screaming of stomach pain and shaking almost seizure like. At which point, I literally interrupted all of them, and said Mattie needs Demerol. I am sure some people read me as brazen. After all I have no medical degree, but frankly I know this patient better than anyone. Needless to say, within minutes Demerol showed up and Laura started pushing it through Mattie's IV. Mattie kept screaming and was hysterical throughout the entire administration. How Laura maintained her cool was beyond me. Mattie needed Demerol right away, but he kept yelling at Laura to administer it slowly. He kept saying, "slow as a snail." When Mattie gets meds quickly in his central line, he sometimes vomits. Linda also rushed into the room to help us since Jenny paged her. The hero of the day was Laura, our HEM/ONC nurse. Why? Because Laura had the where with all today to pre-order Demerol just in case Mattie had a reaction. I can't STRESS enough how important that was to do. The oncology pharmacy at Georgetown is inept, and extremely slow. If Mattie had this reaction, and the Demerol wasn't on the floor, I can only imagine the chaos that would have unfolded. Laura in my book saved the day. I will now ALWAYS confirm that the staff has Demerol present before a MTP administration. I had just made the assumption before that it would be available if such an episode happened. Never assume! I can't tell you how well the residents and nurses mobilized forces today. It was impressive.

Dr. Abu-Ghosh also came up to assess Mattie. Though we think this was rigors from MTP, she wants to rule out a bacterial infection, which can also produce rigors. So she changed Mattie's antibiotic regimen tonight. Mattie also continues to be running a fever this evening. We can't shake it, and all the blood cultures continue to show up negative. Dr. Abu-Ghosh is alerting the Lombardi Clinic, because she feels in the future, we just can't go home right away after an MTP administration. The residents and Dr. Abu-Ghosh were horrified, because they wondered what would have happened to me if I went home with Mattie after a clinic administration and then Mattie had this episode at home or while driving! So now this is Mattie's second bad reaction to MTP, and I believe this is his 10th overall administration of the drug.

After Mattie received Demerol, he literally passed out and went to sleep in his wheel chair. By this time, I was thoroughly wiped out, and somewhat shaking myself. Dr. Jung, the senior resident came back in to check on Mattie. At which point she said to me, that she is so impressed with me. She says she has seen me under the worst of circumstances, yet I am always calm, collected, and rational. I told her that this is facade, but I realize to some extent I must put up this facade, because Mattie feeds off of me. If I panic, he will escalate in his behavior. I appreciated Dr. Jung's perspective, but it took me a while to calm down today.

I kept Peter informed about this, and when he arrived tonight, he took over, and I left the room and I am in the parent lounge away from noise and distractions. I am doing laundry, typing the blog, and watching the fish in the fish tank. Meg and Laura (Linda's interns) also stopped by before they left for the day. Meg even gave us her cell number and offered to stay with Mattie over the weekend for a few hours to give us a break. I thought that was very thoughtful.

We want to thank the Wendt family tonight for a wonderful dinner. I love the cheesecake factory. Though Betsy got me a tantalizing chocolate cheesecake tonight (which I LOVE!!!), I felt compelled to give it to Laura our nurse. She deserved it because she worked so hard today on Mattie's behalf. I felt good being able to give her this treat. Thank you Betsy for the support. We also want to thank the Barth family for their wonderful gifts to Mattie. They dropped it off today at the hospital. The gift is filled with bug creatures, those that wind up, books, and even a bake a bug set! Mattie couldn't wait to throw me out of the room tonight, so that Mattie and Peter could start learning and creating bugs! A gift right up his alley, you made his Valentine's day. Thank you Virginia and Jon Morgan. I look forward to meeting both of you one day!

I want to end tonight's blog with an e-mail and a song that ran through my head tonight. The e-mail is from Charlie my former student and friend. Charlie wrote, "Talk about a difficult uphill journey. This round seems more a mountain to assault than the usual hill to climb.I do hope the summit is reached soon and that the rest of the way will be downhill. I think we all recognize that there will be obstacles to avoid but if it is at least mostly level or an easier time of it for Mattie we will all be so grateful. You and Pete are doing an amazing job; I don't know where you find the strength for each new detour. Tonight is Shabbos and once again, as the candles are lit, I will pray that light that guides the holiday in each week, bring strength, comfort and healing to Mattie and you."

The song I leave you with is from the movie, Beaches. I remember seeing this movie while I was in college, and there was something that captured my attention in the movie even back then. It is about two best friends and their journey in life together. However, one develops a terminal disease. The song that ran through my head today was Bette Midler's, "I think it is going to rain today." In this Youtube clip, you will see Barbara Hershey researching her disease and realizing her situation is grave. It is moments like this today, that I feel somewhat down, hopeless, out of control, and unable to move forward. For me it rained today inside the PICU.


http://www.youtube.com/watch?v=yxXYXctndCQ