Quote of the day: "Sleep is the golden chain that ties health and our bodies together." ~ Thomas Decker
Mattie had another MTP reaction last night. You may recall he received MTP-PE on Tuesday evening. Within 90 minutes he had a reaction requiring the administration of Demerol to eliminate the symptoms. On Wednesday, almost 24 hours after the infusion of MTP, Mattie developed two different delayed reactions, one was at 4pm which required Demerol, and the other was at 1am. Mattie slept Wednesday away, so much so, that I was afraid he wouldn't sleep last night. However, after receiving Demerol at 1am, Mattie fell asleep around 2am. Mattie had trouble waking up today, not unlike on Wednesday. However, there were many causes for this. First of which is Mattie was in pain and needed Morphine at 7:30am. Second, Mattie needed both a platelet transfusion and red blood cell transfusion (which could explain his tiredness). In order for Mattie to receive blood products he must be first be premedicated with Tylenol and Vistaril. Vistaril is an antihistamine that simply knocks Mattie out. So Mattie had a triple whammy today: 1) Morphine, 2) Vistaril, and 3) he was severely anemic (low hemoglobin level). Thankfully though, I had no trouble administering Tylenol to Mattie. He woke up long enough to receive it orally and then went back to sleep.
Tricia was our nurse today, and she worked very hard to keep Mattie comfortable and safe. Mattie came to consciousness a couple of times and I told him that Tricia was his nurse and he said he knew she was around and clearly felt very comforted by that. I woke up this morning at 7:30am and took a shower, but after I was done, I was just not functioning very well and decided to take a nap. Napping is non-existent word in the PICU. I felt like I closed my eyes for 20 minutes and then there was a knock at the door. It startled me, and I jumped up, my cell phone fell on the floor in three pieces, and I came to the door barely able to catch my balance. At the door was Ann, who was waiting outside and did not want to disturb me and Dr. Rogers, a Gastroenterologist. Dr. Rogers was asked to come by and consult about Mattie's stomach pains. As I described the symptoms Mattie was having to the doctor, he felt that Mattie's pain was not indicative of an ulcer, but more irritable bowel syndrome issues. He had Mattie take an abdominal xray today, and he feels that Mattie is having spasms in that region that are very painful. Many things could cause this irritation, such as his diet, lack of mobility, chemotherapy, and of course pain medications.
Dr. Rogers has a good sense of humor and seemed open to finding ways to help Mattie. It was so funny, the consultation took place right outside Mattie's door, in the middle of the hallway. Clearly, Dr. Rogers wasn't happy with this arrangement and asked if I wanted to go to a more confidential place. However, in the PICU there are NO private meeting rooms to discuss sensitive patient information. I remember in August when I first arrived at the PICU, I was mortified that such side bar conversations would take place standing up in the hallway with others listening. However, after 10 months, I have become desensitized to the lack of confidentiality and privacy. In fact, I freely discuss ALL sorts of information in the hallway. Amazing how human beings can adjust and adapt to whatever environment they are in. I told Dr. Rogers that I am so beyond worrying about HIPAA compliance, that even he laughed!
After meeting with Dr. Rogers, I had an opportunity to sit with Ann and have the wonderful tea and special breads she brought me. Ann brought Mattie something hysterically funny today, a LARGE fly swatter. Mattie has threatened Ann and I for months now that he wants a fly swatter so he can design a game in which he pretends we are his "bugs" and he can chase us around and squash us. So Ann fulfilled a special request. The irony is that Ann and Mattie joke all the time about bugs. So much so that on mother's day when the hospital was featuring these huge sparkly fly shaped pins, Mattie made sure that I got a pin for Ann. Ann wore this fly pin on her jacket today, and Ann pulled it off very well because it actually looked lovely. I am sorry Mattie did not see this for himself, but I told him about it. Ann came to Georgetown today to help introduce me to a young man who is a Junior at Georgetown University. His name is Dan. Dan goes to college with Ann's babysitter. Dan is interested in working a few days for us this summer and he has experience working with children who have cancer. I am eager for Mattie to have various social experiences this summer, and I can't thank Ann yet again for helping me with another major task. I am just so absorbed with Mattie's care right now that I am really unable to secure Mattie helpers for the summer. None the less, I freely admit that I need help.
When Dan arrived, I had to jump back into Mattie's room and administer him a second dosage of Tylenol for his red blood cell transfusion. While doing this, Ann chatted with Dan and brought him up to speed with Mattie's situation. I had the wonderful opportunity to chat with Dan and Dan has agreed to come back on Friday at 3pm to play with Mattie for a few hours. It is my hope that they click and that Dan will be able to motivate Mattie physically in ways that I can not during the day. After all, in addition to being a Georgetown student, Dan is also on the Georgetown football team, so I would imagine physical activity is important to him. So stay tuned for more Dan updates.
After Ann and Dan left, I had a visit from Dr. Spevak and his nurse, Nan. Mind you I have had all these meetings today in the hallway. This is my new place of employment! Dr. Spevak is the head of pain management at Georgetown. Dr. Spevak told me that an epidural would be the best possible way to manage Mattie's pain after a sternotomy. I then asked Dr. Spevak some procedural questions since Peter and I found that there were many glitches with regard to pain management after Mattie's first surgery. However, I frankly think that limb salvaging surgery was something that the PICU hasn't had a great deal of experience managing, which may explain why we landed up have pain management wars among different medical professionals. We want to avoid that this time, and I told Dr. Spevak that I am not shy, and now that I have met him, I will have no problem personally calling him with issues that arise. He was open and receptive to that. Excellent!
My mom was sitting with me in the hallway through all of these interviews, and then after Dr. Spevak left, Denise our social worker came by to talk with us. I told her about our session with the clinical psychologist and my current concerns. I really feel like Denise understands my concerns and is advocating for us. Another social worker came by today to offer me a referral to speak to a psychologist for myself. I told Denise that I appreciate this idea, but in all reality what would I be going to therapy for? At the moment I definitely don't have the time since I am balancing Mattie's intense needs, but I also have some understanding of the therapy process. There is SO much about Mattie's illness that I can't control because having a child with a life threatening illness is horrific. No amount of therapy is going to change Mattie's diagnosis or the situation. In my perspective Peter and I are handling a parent's worst nightmare very well and proactively. However, what I need is a support group for other moms with children who have osteosarcoma. I do think that there are commonalities cancer families experience, but there are specific obstacles that osteo families must face and deal with that other cancer families may not have to face.
I had the opportunity to go on campus for lunch with my parents, while Linda stayed with Mattie this afternoon. Mattie slept for most of the day. While I headed to lunch with my parents, my mom had a very intense back spasm, which left her almost paralyzed in pain. It was at that point I realized that she needed medical attention and of course when I have a problem I call Ann. For those of you who don't know Ann, she balances a million things, however, no matter what she is dealing with, she responds to me immediately and always helps me strategize a solution. Ann and I spoke at lunch and she contacted Dr. Bob, who is now caring for another member of my family (my mom). Bob ordered a MRI to assess my mom's condition. After lunch, I spoke to Linda and she helped coordinate the MRI for my mom. Linda jumped through all sorts of hoops at the hospital. Georgetown's MRIs are all booked up for days and the only time the MRI could be scheduled for my mom would be at 1am on Saturday. So Linda started exploring other ways to get this done, such as going through the ER, or even another hospital. Linda did a great deal of calling around and even escorted my mom down to the MRI department to preregister for her 1am MRI. When the MRI folks saw my mom they said that there is no way she should wait until 1am on Saturday for this test, so instead they are taking her at 6:30am on Friday. Linda is a miracle worker, and I am very thankful to Ann, Bob, and Linda for helping me today, when I couldn't help my mom to the best of my ability.
When Mattie woke up, he was eager to play. Mattie immediately spotted Ann's HUGE fly swatter in the room. He LOVES it. Jessie (one of Mattie's art therapists) and Mattie played a pretend game about alien bugs, and Mattie had to swat them to prevent them from inhabiting the Earth. The alien bugs were made out of pipe cleaners, and Mattie was having a great time defending Earth. The funny part is the fly swatter is bigger than Mattie's head.
While Jessie and Mattie were playing, I happened to notice that there was a REAL fly in Mattie's room. In 10 months, I have NEVER seen a real bug in Mattie's room, so I was fascinated with this fly. Mattie literally started swinging the swatter all over the room. He even got Tricia (Mattie's wonderful HEM/ONC nurse) to participate in the activity. Mattie had Tricia running around trying to swat the fly with her hands. However, in addition to her nursing skills, Tricia is also a skilled fly catcher. She literally caught the fly between her fingers! Mattie thought that was totally neat. Tricia wanted to get a laugh out of Mattie, and she pretended to eat the fly! We all couldn't stop laughing and I felt compelled to photograph this lighthearted moment!
We want to thank the Holm's family for a wonderful and tasty dinner. Evelyn, I loved the tea and the NEW cup. The desserts were out of this world. Thank you for thinking of us and supporting us even when you are 2cm dilated. You are amazing! Mattie loves the baseball bat you gave him filled with gum. He loves the bat and I love the gum!Left: Mattie with a baseball bat filled with gum! He was fascinated by the gumballs inside that looked like baseballs.
An update on Mattie's condition...... Mattie continues to have an absolute neutrophil count of zero. He has been in the hospital 10 days so far for this admission, he has had two red blood cell transfusions, and three platelet transfusions. Not to mention he is pumped up on a ton of Morphine to balance mucositis pain and osteopenic pain.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "We take sleep for granted until we can't sleep for a night or two. I know how short tempered and irritable most of us are when we miss just one night's sleep, but what you are going through is like comparing a week of no rain in Virginia to the Sahara Desert. I really don't know how you are continuing to function at all. Every study I've ever read says that as your sleep deficit grows your ability to learn, to think clearly and to manage your emotions decreases. What an awful situation for someone who has to manage a child with roller coaster moods and multiple medical emergencies to be in. I suspect from reading Wednesday's blog and how much Mattie slept during the day that he (and therefore you) were up most of Wednesday night. I certainly hope that wasn't the case. I think at this point, Mattie's sleep cycle is completely off and the only way you will get any rest is to try to sleep when he does if you can even if that is during the day. Once you get him home you will have to work toward getting him back on a regular cycle of up during the day and asleep at night."
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