Friday, May 22, 2009

Friday, May 22, 2009

Quote of the day: "Endurance is one of the most difficult disciplines, but it is to the one who endures that the final victory comes." ~ Buddha

Thursday night felt like Peter and I were riding a roller coaster, and for those of you who know me, I don't like roller coasters either literally or figuratively. Mattie had intense highs and lows last night. I have noticed, as has Linda, that Mattie is VERY bored in the hospital now. There is literally no activity he can do that captures his attention. This alone agitates him, and he has now announced to me that he doesn't want his friends visiting him in the hospital anymore. He wants playdates but doesn't feel comfortable with them in the hospital. That was a new pronouncement, which saddens me, but I can respect that. Mattie began the night agitated, not knowing what he wanted to do to occupy his time. He kept saying, "I want to do something." But there was nothing we could come up with that interested him. In addition, Mattie became hostile and aggressive 15 minutes after receiving Morphine last night. During which time, he threw me out of his room. He only wanted to be with Peter. After hearing him whining and screaming for me to leave, I accommodated him. I spent about an hour outside the room, and ran into a lot of staff in the hallway. I had my feet up on a bench and was working on the computer. A doctor in the unit, who doesn't know me, came up to me and said, "don't you work here?" I guess I looked like I was making myself at home with my feet up. I looked at him, and I said I practically feel like I work here, but that my son was in the PICU and that I have been at Georgetown for almost a year now. He knew of Mattie, it seems like everyone at Georgetown knows Mattie!

After I was dismissed from Mattie's room, Peter called me and said I was requested to come back, and then Mattie threw Peter out of the room. We finally settled on an activity that finally caught Mattie's attention, which was to blow up rubber exam gloves. He thought that was a riot. I called Peter back to the room to help me blow up these gloves. This took on a life of its own. We even got Erin, Mattie's wonderful HEM/ONC nurse involved. I think Peter must have blown up at least 20 gloves. Mattie started to make a composition out of the gloves in his wheelchair, and I thought it was so creative, I took pictures of it.

Left: Mattie with his glove balloons, or has he calls them, his "turkeys!"

Right: The turkey composition in a wheelchair!

Left: A close up of the turkeys!

In addition to this artistic creation, we all got into a joking kind of mood. We knew the charge nurse of the PICU last night. It was Ashley. Ashley is a PICU nurse and a Boston College (BC) graduate. We relate to her well because she is from Boston and she and I have BC in common. She is also a lovely and warm individual. So we rang Mattie's call bell last night and told Ashley we needed Erin's help (mind you Erin was already in Mattie's room). Well of course Ashley couldn't track Erin down, so when she came to our room to help us and give us this news, she was surprised to see Erin. We surprised Ashley with a bed full of "turkeys!" Ashley hammed it up and acted surprised and then gave Mattie purple gloves to add to his artistic turkey composition. Ashley and Erin then called other nurses into Mattie's room to check out the turkeys. Mattie was loving the attention and for a moment came out of his shell. But after this point, the night went downhill and very quickly.

Peter was tired and it was 1am, so I told him to lie down since he was going to work on Friday morning. At around 1:15am, Mattie started in on me. He was hungry and with that became hysterical. He wanted spaghetti with tomato sauce. However, I did not have any pasta on hand because Mattie hasn't been eating for days. I tried reasoning with him and coming up with different ideas of things to eat. Nothing interested him, and instead he was melting down about the fact that he was starving and was going to vomit if I did not comply with his demands. He worked himself up so, and clearly Peter couldn't sleep with this chaos. Peter jumped up, grabbed his car keys and went on a hunt for pasta to quiet Mattie down. The scary part about all of this is Peter was very tired and should have been resting and NOT driving. Peter tells me that in search for pasta he almost hit two deer on the road. The tension of Mattie losing it, Peter driving around at 1 something in the morning, was just about too much to handle. When Peter got back, I fed Mattie the pasta (nothing like pasta in a can, but apparently this is the only thing he will eat now, Chef Boyardee). He did eat a little of it, but then of course complained that his stomach bothered him. At 3am, I gave up, we gave Mattie more morphine and he finally went to bed.

Mattie had trouble getting up this morning. In fact, Peter left for work and said good-bye to me, and I couldn't move from the chair I was sleeping in. Tricia, Mattie's HEM/ONC nurse today, came in at around 9am, and I was so disoriented. I jumped out of my chair, and slowly started coming to consciousness and eventually took a shower. After I showered, Tricia and I were on a mission to wake Mattie to give him Tylenol. Mattie needed a platelet transfusion today. He had a red blood cell transfusion yesterday, and I was unable to give him tylenol as a premed yesterday. But since Mattie typically gets a platelet transfusion reaction, it was imperative he get tylenol today. Thank God, Mattie complied to take it and then went back to sleep. While Mattie was sleeping, Tricia and I had a chance to chat. I am deeply fond of Tricia. She is a talented and thorough nurse, and she puts her heart into the work she does. She told me she reads Mattie's blog and it is important for her to know how Mattie is doing each day. She knew that Mattie was having a difficult week, and for me it was a great feeling that Tricia knew about how we were all feeling this week, without me having to update her. She just knew, because she is invested in Mattie's wellness. At one point Tricia and I were chatting today, and we both landed up in tears, because she was telling me she doesn't know how I do what I do, and in comparison to me, she has nothing to complain about in her life. I found this very touching and human.

I also had a visit today from Katie, another fabulous HEM/ONC nurse, who is a big supporter of Mattie. Katie came in to chat, lend her support, and some how I sensed she was telling me, I am not alone, though I have felt this way this week. What do I say about these nurses?! They continue to amaze me with their care, concern, and skills.

It was a busy morning of visitors. Jey, Mattie's hospital big buddy, came by and brought him a soccer ball. Jey wrote "Mattie Bear" on the ball. It is very touching how Jey keeps track of Mattie and how he is doing. While Jey came by, I was already chatting with an endocrinologist from the hospital. She came to discuss Mattie's bone density scan results with me. She let me know that Mattie has osteopenia (Mattie scored a z-score of -1.7, which is a standard score. This score compares Mattie to a norm group. The average score is zero, and therefore Mattie is almost two standard deviations below the norm). Osteopenia refers to bone mineral density (BMD) that is lower than normal peak BMD but not low enough to be classified as osteoporosis. Bone mineral density is a measurement of the level of minerals in the bones, which indicates how dense and strong they are. If your BMD is low compared to normal peak BMD, you are said to have osteopenia. Having osteopenia means there is a greater risk that, as time passes, you may develop BMD that is very low compared to normal, known as osteoporosis. In addition, Mattie has a vitamin D deficiency. So from my perspective all of this may help explain why Mattie has muscle and bone pains, and has needed to have body parts wrapped up. It also explains to me why he moves gingerly. So Mattie will need to take about 1400mg of calcium, along with 400units of Vitamin D per day. The endocrinologist feels this problem won't resolve itself quickly and Mattie will need to be followed and given bone density scans once a year. Lovely! Another thing to add to the mix.

After I met with the endocrinologist, the medical resident came in to let me know that Mattie tested positive in his blood for Helicobacter pylori (H. pylori). H. Pylori is a type of bacteria. Researchers believe that H. pylori is responsible for the majority of peptic ulcers. H. pylori weakens the protective mucous coating of the stomach and duodenum, which allows acid to get through to the sensitive lining beneath. Both the acid and the bacteria irritate the lining and cause a sore, or ulcer. So in essence it appears that Mattie may have an ulcer. They are going to do more extensive testing on Mattie to get down to the bottom of this. I am happy that the GI folks at the hospital are on top of this (thanks Lauren, a fellow Osteo mom, I am in total agreement with you that this needed to be addressed!).

I am not sure why I felt happier today, but learning that there are medical reasons for Mattie's pain helped me tremendously. Because I guess I feel these organic issues can be addressed much easier that pain that is a result of fear and anxiety. I am not saying that Mattie isn't dealing with the after math of multiple traumas and anxieties, but I feel that when Mattie reports physical pain, we can't ignore it. So Mattie continues to be on Morphine today for the ulcer and mucositis.

I also connected with Dr. Peters today, the head of the microbiology labs at Georgetown. He let me know that one of Mattie's cultures showed Staphylococcus hominis. This is a coagulase-negative member of the bacterial genus Staphylococcus, consisting of Gram positive, spherical cells in clusters. It occurs very commonly as a harmless commensal on human and animal skin. However, like many other coagulase-negative staphylococci, S. hominis may occasionally cause infection in patients whose immune system is compromised, for example by chemotherapy or predisposing illness. Because we are unable to determine whether Mattie's line is infected truly or whether this is a contaminate, the doctors are continuing to give Mattie antibiotics to play it safe. However, he is on a milder antibiotic now, and he is no longer taking Vancomycin.

I also had a visit from Dr. Biel, Mattie's psychiatrist. He came to clarify his position, and I know Dr. Shad spoke to him about his treatment toward me. Though at times my personality can clash with other professionals, I am always willing to work with someone if I think he or she has Mattie's best interest at heart. Dr. Biel says he wants to work with us and wants to coordinate care with Jen (the educational and behavioral management consultant) and her clinical psychologist colleague. So I shall see how this works for us. But I feel after 10 months of working on all these issues, I know immediately when something is going to be productive and worthwhile pursuing and I have no trouble terminating a plan that I perceive ineffective.

Dr. Synder, Mattie's oncologist, came up to see us today too. Are you getting a feeling for how busy our morning was?! Dr. Synder spoke to Peter and I about Mattie's ulcer, central line infection, and osteopenia. In our discussion we talked about the importance of addressing the big elephant in the room with Mattie. Which is his lung surgery. We all think that Mattie is more clued in than we think. He has certainly heard people talk about the surgery in front of us. In addition, Peter talked about the upcoming scans in June. Peter is trying to prepare me for the possibility that another primary bone tumor could be revealed in the scans. If this happens then the lung surgery would be a moot point. Not that Mattie's prognosis is good as it currently stands, but if another tumor arises now, then in a way this changes everything. Unlike Peter, I am in complete denial about this possibility. I am not able to process this at all, and frankly it is too overwhelming for me to even think about right now.

I am happy that Peter joined us at the hospital this afternoon. He brought us lunch and I have so appreciated his support with Mattie this week. It was very much needed. Later this afternoon, my parents came to visit Mattie. They played with him for a while and built Legos and created stories around the Legos. While they were playing, I literally went side ways, and fell asleep for an hour. In fact, there could have been a fire in the room, and I would have slept right through it.

So it is now 11pm, and Mattie is VERY much awake. He feels like he wants to eat, but he is having trouble in that department. None the less, he is at least attempting to eat now. So on some level he must be feeling better. Mattie is still severely neutropenic, and it is my understanding that we will be here through part of next week.

We want to thank the Coker family for a wonderful and tasty dinner. Carolyn, thank you for my favorite salad from the Cheesecake Factory, and for the beautiful strawberries and chocolate cake! We appreciate your constant support. With the fact that Mattie slept most of the day, tonight is turning out to be hellish. I have been thrown out of the room again, called everything in the book, and I left Mattie with Peter until I can regroup. Living with someone who has intense mood swings can impact your own mood greatly!

I would like to end tonight's posting with two messages. The first message if from my friend Charlie. Charlie wrote, "Thank goodness it is Friday and I hope this horrible week comes quickly to a close for you and that next week finds Mattie feeling and responding better. Your exhaustion comes through so clearly; I don't know how you found the energy to go shopping for toys yesterday. Your determination simply amazes me. As for the doctors, all I can say is that like any other group of people, some of them are truly oblivious to what and who are around them. It was inappropriate and insensitive of them to discuss Mattie's upcoming surgery in front of him without discussing it with you first and good for you for chasing them out of his room. They remind me of the people who walk around with a phone in their ears, discussing all sorts of personal information and acting as though they are surrounded by an invisible shield that suppresses the sound while all the time the rest of us are wincing at the personal conversations taking place where anyone can hear. Anyway, maybe your actions will be a wake up call for them! I hope it turns out that Mattie does not have a central line infection, getting off the antibiotics might be helpful with his stomach problems too! If that is the case and he doesn't have an infection you might want to keep that in mind going forward and request a second culture anytime the the hospital suggests Mattie has any kind of infection to be treated. Somehow this reminds me of the other infection Mattie really did not have. We will light Shabbos candles tonight and pray for Mattie to be relieved of his pain and for you to get some much needed rest."

The second message is from my dear friend, Lorraine. Lorraine wrote, "I was so glad to have bumped into you and your Mom, to get the chance to chat the way we did, and to see you both looking so well compared to the horrific way this never ending week has gone. It was clearly meant to be to meet you, and we could not have planned the timing better. But the good feelings end quickly when I read about the side effects of the morphine on Mattie -- don't recall the aggressiveness before but I'm thinking that now the morphine is building up in his tiny system and wham, something has to give! In some ways your feelings of sitting in the childlife room tossed out because of the morphine reaction reminded me of what it was like to see my Mom treat my Dad when dementia finally hit her ... and how caregivers feel when their loved ones are unrecognizable when Alzheimer's strikes. Of course you don't need anyone to tell you about caregiving! In your wildest dreams, who would have imagined that your dissertation on caregiving would have later grown so wide to encompass caregiving for a child with cancer. It is just such a cruel fate to endure -- all the emotional hurts on top of the physical pain and illness, not just all these very complicated emotional effects that Mattie is dealing with but the emotional "roller coaster" you have no choice but to endure as Mattie experiences all of these mood and behavioral effects -- that are clearly the result of side effects of powerful drugs and all the pain and fear he is dealing with. What a tall order on Mattie, you, and Pete. So, by comparison the impact on me is nothing but I must thank you for appreciating and noting what is true: Mattie's illness has hit me very hard. I feel so very sad for all of you, can't believe this is how your life is going right now, feel rather helpless as a friend, but mostly just so very sorry for the incredible amount of pain and suffering Mattie is going through. He is just such a special little boy and this disease has been very cruel. Still, somehow you are managing and looking wonderful. G-d knows how but you must be blessed with something magical Vicki, something that is contagious to those around you, to see you shine amidst the very worst of times. Can you imagine what you will accomplish when the good times finally roll around? They have to ... right now you are stuck in a time bubble, where nothing seems to be changing, but there has got to come a time, when something better is ahead."