Tuesday, October 21, 2008

Tuesday, October 21, 2008 - I will try to do continual updates today. Look below.

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.

However, the amazing news to report is that Mattie got out of bed today and mainly did most of the work himself. He got up, went to the bathroom, and stood a while. I went out of the room to have lunch, and I missed this special moment, but Mattie shared it with Peter, Alison, Whitney, Lesley, and his nurse, Julie. Mattie is handling this like a trooper, and Peter and I are very aware of the first 48 hours being crucial for pain management.