Tonight's picture was taken in July of 2009. About a month before we learned that Mattie's condition was terminal. Rather ironic how one's life can change in a few weeks time. This photo wasn't taken by me, but by one of Mattie's art therapists. I am in the background behind Mattie. However, this was a fascinating photo because a lot was happening around the art table in clinic. The man in yellow is Bob Weiman (Mattie's head of the lower school) or as so many of us call him, "the Magic Man." Bob came to visit Mattie frequently in the Hospital and taught Mattie numerous magic tricks. These lessons were SO IMPORTANT for Mattie. Almost therapeutic, because Mattie was limited physically from doing other activities. However, despite having both arms operated on, Mattie had the manual dexterity to learn and perform the tricks. Next to Mattie in blue was his friend Maya. Maya was Mattie's age, and was the only same aged child Mattie ever became friends with at the Hospital. I attribute this to the fact that they were both very bright and had a witty personality. Talking to me in the background was Jocelyn. You can't really see her, but she was there. Jocelyn was a young adult battling osteosarcoma and became a real pal to Mattie. When Jocelyn died, "the Magic Man" was impacted too, because Bob had interacted numerous times with Jocelyn. Hard to imagine that two young people are now gone from this photo.
Quote of the day: Out of suffering have emerged the strongest souls; the most massive characters are seared with scars. ~ Kahlil Gibran
Certainly there is Vicki the rational person and then there is Vicki, who will always be Mattie's mom. Naturally the Mattie's mom instinct kicked into gear when hearing this! I was truly perplexed how this child could be doing so well and eating! The photo I am showing you was Mattie two days after his first limb salvaging surgery. This was the FIRST time out of bed and his room. It took myself, all the child life interns, and Mattie's art therapist to assist with this event. An event was indeed the right terminology.
I can get upset with myself after my reactions, because in all reality, shouldn't I be HAPPY that this other child I heard about today is doing SO WELL? Shouldn't I be thrilled by this news?! Well the answer from a human perspective, is OF COURSE I am happy for the other child, but this is the challenge of an issue being so personal. It is hard at times to separate the help I provide as a Foundation leader from the closeness I feel about the disease.
I can NEVER forget Mattie's ordeal. Fortunately I had the where with all back then, despite being SO STRESSED out, to write Mattie's blog every day and report on the process and how Mattie and all three of us were doing. Which is why tonight, I turned to the blog, specifically to October 21, 2008, the first day after Mattie's FIRST limb salvaging surgery. Take a look at what the first post-op day looked like for us. After you read below, you may understand why I am SO perplexed over the news I heard today.
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October 21, 2008 (1 day after surgery)--- lifted from the blog:
It is around 2am, and we are not getting much sleep here. Mattie is running an 100.8 degree fever, and they have decided to run a culture of his blood to rule out other infections. In addition, Mattie is very uncomfortable and is now on Fentenol and Versed in addition to the continuous perineural drip. There is something about this hour of the morning that makes things seem more pronounced, scary, and daunting. Mattie told me that it feels like we are killing him. But we explained that all this pain was very normal, and it is a matter of finding the right balance of pain medication. Everyone is trying very hard to make Mattie comfortable, and we feel supported as we plow through the night. However, Mattie is not enjoying the catheter much nor does he like the fact that he has two IV lines in his left arm. As he becomes more agitated, he wants to move his body. Which we are encouraging him not to do right now. But he held our hands tonight with his right hand, which seems to be swollen, but functioning quite well considering the major surgery he had. I sit here worried about this fever, and of course wondering how we are going to manage the pain, since he complains every 15 minutes of pain. Mattie is bandaged up on the right side, and has a drainage tube and the perineural coming out of the bandage. On the left arm he has two IVs, and he also has a catheter to collect urine. So movement is not an easy process for him, and as we move into Tuesday morning, I wonder how on earth he will accept his current state, and better yet, how will we help him when we are both wiped out? All great questions, and hopefully I will be able to give you the answers as the day unfolds.
It is around 3:45am, and we are still struggling at managing Mattie's pain. They have now ordered a continuous IV drip of fentenol, in hopes of helping Mattie. When I asked him to describe his pain on a scale of 1 to 5, with 5 being the highest, he selected 5. He is still running a fever as well.
It is 12:30pm, I will try to recap the morning. At 5:30am, they finally got the continuous drip of Fentenol going. It was at that point where we got some peace (why Bob's suggestion for a PCA wasn't done is beyond me, but again this is what happens when you are in a system, and you have to follow certain protocols or chains of command). But at 8:30am, Mattie was in pain again, and he is good at describing his pain, and he never yells or screams. Well being hoarse from being intubated during surgery may impact this lack of screaming, but he is excellent telling us when he needs pain meds administered. Around 11am, the PICU doctors rounded. What does this mean? Well it is literally like a pow pow outside your room door. In attendance is the PICU attending, our HEM/ONC attending, residents, nurses, and our nutritionist, Ellen. Linda stayed with Mattie while we attended this meeting right outside our door. Being in the mental health field I am very cognizant of confidentiality and HIPAA issues. I am always in amazement how such a round, discussing vital patient information, can take place right in the middle of the hallway. But I digress. So Peter and I listened to what the doctors were reporting. Frankly, Peter is a lot better at this than I am. I am far from dispassionate when it comes to Mattie. If I were listening to the report on someone else, then I am sure this factoid report, with NO emotion, would have been just fine. But it was FAR from fine as a mother of the patient. I was so insensed by the whole meeting and how it was conducted, that I told Peter right in front of the doctor that I did not find this meeting productive or helpful to me, and I left. I am in no way qualified to tell a doctor with years of experience how to manage or run his team or staff. But I feel I am very qualified to express how his cold demeanor impacts me, a family member. Any case after the round, Julie (Mattie's nurse) came in to remove Mattie's catheter and Arterial line (which looks like an IV in his left wrist). The arterial line was internally taking Mattie's blood pressure every 10 minutes or so. It was a blessing to get this line taken out, because Mattie's left hand was basically immobilized on a plank or splint. Currently, Mattie is sleeping, but it is our hopes of getting him out of bed today. He needs to move around, because of his swallow breathing, his lungs are not getting enough oxygen. The aftermath of surgery isn't a pretty picture. But I have wonderful news to report. Bob was very humble yesterday, and he did not tell me this per se, but Mattie's attending oncologist today told us how important it was for Bob to remove Mattie's tumorous bone intact. In fact, when they see Bob's surgerical pictures, they are all in amazement. In amazement because Bob's work is clean, orderly, neat, and appears to have really cleaned out the area of anything that looks cancerous. To me that was such excellent news, and you need excellent news like this, in order to get through the hours of watching your child immobile, in pain, and with tubes coming out of him in every direction.
It is now 4:20pm and we just met with Dr. Gonzales. We shared with Dr. Gonzales our concerns about Mattie not being on a PCA (patient controlled anagelsia). Some of you may recall the coordinated care meeting we had with Dr. Bob Henshaw and several other professionals prior to Mattie's surgery last Wednesday. Within that meeting, Bob discussed with us a PCA. It was our understanding we were going to have one for Mattie right after the surgery, to help manage the pain. However, the anesthesiologist assessed that there could be a safety issue if Mattie obtained a PCA. The safety issue was that Peter or I would push the pain pump for Mattie, rather than Mattie doing it for himself. What became a simple dialogue turned into a decision that I believe wasn't in Mattie's best interest. Mattie did not receive access to continual narcotic pain medication until 5:30am today. So we told Dr. Gonzales about our expectations and what we felt transpired in the pre-op area. Dr. Gonzales then spoke to the anesthesiologist and advocated on our behalf. The beauty of the PCA is Mattie can dictate when to push the pump and receive medication when he is in pain. Therefore, he will only get this narcotic if and when he feels he has pain, and it won't be floating in his system 24 hours a day. It will be used only when he needs it. I am happy with the way this was resolved and I am hoping that Peter and I can help Mattie learn this new system.
It is now 10:30pm, and Peter and I are thoroughly worn out. How Peter is going to work tomorrow is beyond my comprehension. We had virtually NO sleep last night (Monday), and who knows what tonight holds. Peter and I have been struggling all day with pain management issues. Dr. Bob Henshaw (Mattie's surgeon) came to visit Mattie this evening and felt that Mattie looked overly sedated and sleepy. Of course this is wonderful from the pain management standpoint, however, from a recovery stand point it isn't so great. Mattie is too tired to talk, attempt to eat, move, and so forth. Peter and I are learning that there are different camps of thinking about how pain management is administered. By tonight, our patience was frayed and we finally spoke with an anesthesiologist resident who worked hard at coordinating Mattie's team regarding the administration of pain meds. Folks from Georgetown came up to talk with us about the dangers of upping the dosage of Mattie's perineural, contrary to Bob's advice. Peter and I are tired, confused, and feel that these folks need to coordinate Mattie's pain care better so they are on the same page, and we are not left to understand this at 10:30pm. I think we currently have a plan, but right now Peter and I are sitting on the edge because Mattie's blood pressure has shot through the roof. We are trying to figure out what is causing this high blood pressure.
1 comment:
Vicki,
I just felt tremendous sadness reading this whole post for Mattie, you & Peter. Everything you said about hearing of another's child's physical state after limb salvaging, affected me, the outsider, pretty badly too and I am just reading it, did not live it.
When I read, Mattie had an arterial line in his little hand, I couldn't help but think of the fear, you all must have been experiencing. The whole notion, that Mattie did not receive a PCA for pain control because someone other than Mattie would have pushed the button is outrageous.
I never understood how the rules of HIPPA are forgotten as Physicians round, talking coldly about the loved one to people listening to the conversation. Heartless is what comes to mind! Thank you for the honesty of your blog. I think this is so important. I am so sorry for the suffering of Mattie, you & Peter.
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