Wednesday, May 20, 2009

Wednesday, May 20, 2009



Quote of the day: "Service isn't a big thing. It's a million little things." ~ Anonymous


Peter told me that Mattie fell asleep earlier than usual (1am!) because he was on Demerol. If you recall, he was given Demerol to counteract the negative reaction he had to MTP-PE. However, Mattie was up several times during the night to go to the bathroom, and then at 7am he announced he was up for the day. So Mattie did not get much sleep on Tuesday night. Mattie wanted to go to the playroom at 7am, but it wasn’t open yet, and this is where the first sign of agitation began for the day. I wish I could say things eventually got better but apparently we are destined to have the week from hell. You may say that is putting it strongly, but in my opinion, hell is the most appropriate and nicest way to describe it! Certainly caring for someone with a physical illness is agonizing and wearing, but compound that issue with a person also experiencing mental health issues and it is absolutely harrowing and overwhelming.


Dr. Bob came by to check out Mattie's arms and legs at 8am. Mattie was actually up for the exam, but unlike his usual greeting of Dr. Bob, Mattie was agitated, and Peter tells me that Mattie's leg was flailing and hit Bob's eyeglasses. I am glad I wasn't around to witness this!


Peter called me a couple of times this morning while I was home to update me on the terrible moods he was dealing with. I was scheduled to arrive at the hospital this morning to relieve Peter so he could go to work, but I wasn't feeling well. Tuesday night I had an intense migraine and with that felt sick to my stomach. I just couldn't pull myself out of bed this morning based on how I was feeling, so Peter did not go to work today. Mattie was in a fragile state and really needed both of us around!

I arrived at the hospital at 11am, and Peter, Linda, and I took Mattie for his dexascan, or bone density scan. I have been so protected by the PICU and the staff here, that I forgot what the rest of Georgetown is like, which can be surly and attitudinal. This was the main reason Peter and I changed hospital and doctor affiliations years ago. Clearly the bone density scan folks, who are located within the OB/GYN department at Georgetown are NOT used to working with children. Ironic, no? These folks help pregnant women who are going to have babies, but they don't have the foggiest clue how to actually handle children! That just made me chuckle! I also am very sensitive about being around pregnant woman right now. This is my own issue to work through, but to me having a baby is associated with a great deal of sadness and pain. So being in a waiting room with all these pregnant women made me additionally edgy, and I did not need any help today. When I registered Mattie for the scan, the staff person I dealt with was snappy and down right mean. She did not want to take us because I did not bring my insurance card with me. I brought everything else such as the package of information I had to fill out and the script from the doctor. I explained to this woman that we were inpatient and all of Mattie's insurance information is in their computer system. She was disgusted with me, because I made her do an additional step to the check in process. Suffice it to say, we were equally disgusted with each other. Even Linda did not care for how we were being treated.

Poor Mattie had a time of it on this bone scan machine. It literally seemed like it took forever, and Mattie had to lie completely still and straight for minutes. At one point he was crying from the pain of holding his legs and arms so straight. All this crying this week is so overwhelming to hear. After the scan was over, we headed back to the PICU and Linda called ahead and warned Mattie's nurse that he would need morphine for his pain. Thank God for Linda! Always looking out for us.


When we arrived at the PICU, I ran into Mattie's psychiatrist, Dr. Biel. Peter had paged him earlier when Mattie was having an anxiety episode. I suggested that Peter page Dr. Biel, because I think it is important for him to experience one of these episodes for himself. Dr. Biel spoke to me about his concern for caring for Mattie by ourselves at home. He feels that Mattie is highly symptomatic and we will need help. I just listened, because I was thinking that he was going to strategize a plan to help in some way, whether it would be through out patient therapy, tweaking medications, etc. To my amazement, instead, he pulls out a piece of paper with seven names on it. He told me to call these individuals and they would help me with the in home management of Mattie's behavior. I asked who these folks were and he said they were therapists trained in behavioral modification. He proceeded to say that they will help teach me how to get Mattie to comply and take his medications and he said that they will serve as babysitters too, to give me a break. I am not sure which of his statements bothered me more, that trained professionals are going to serve as babysitters or that I MYSELF need training on how to give Mattie medication. Peter and I have developed our own strategies over the last 10 months, and I have been Mattie's mother for 7 years. I frankly do not think I need training, thank you very much! I was so incensed and I told him as much. I also said no good therapist in their right mind is going to perform behavioral management techniques with Mattie until his mood is stabilized, and in my opinion that is his job. So I felt like I had reached an impasse.

Dr. Synder, Mattie's oncologist came by to visit with me, because she understands Mattie is having a hard time, and therefore so are Peter and I. Dr. Synder listened to my concerns, and also told me that any one of Mattie's issues was overwhelming alone, but compound them altogether, and it is extremely challenging. Here are the issues at a glance to give you a feeling for what we are dealing with: 1) Mattie is severely neutropenic (with an absolute neutrophil count of zero - and therefore will NOT be released from the hospital until his counts rise), 2) Mattie has a central line infection in which he needs vancomycin to treat it, 3) Mattie has intense stomach pain, 4) Mattie's knee and ankle are bothering him, 5) Mattie is dealing with intense anxiety and fear, 6) sleep deprivation, 7) potassium levels are very low and we continue to give him boluses of potassium (potassium is critical to cardiac muscle function), 8) a low hemoglobin level and will need a transfusion on Thursday, 9) he is non-compliant with taking oral medication, and 10) Mattie is clingy and wants constant attention. I am sure there are other issues I am overlooking, but you get the picture.

We want to thank Ellen for bringing Peter and I a wonderful lunch today. I actually went outside and had lunch with Ellen for a little while, until she had to leave to pick Charlotte up from school. We really appreciated her support today. I also had the wonderful pleasure of seeing Brandon, his mom, Toni, and his sister, Ashley today. What a lovely family and I am so happy that Brandon got to see Mattie for a short time too.

Despite my irritation at the referral list that Dr. Biel gave me, I did start calling some of the professionals to see what help they could offer us. The first person on the list, I called, but she never called back and I wasn't impressed with her voice mail message. Funny how you can tell a lot about a person just from their voice mail message. You can instantly tell whether a person seems warm and inviting to talk with (a rather important quality in a therapist I think!). So I just kept proceeding down the list until I connected with a live person. I had the opportunity to connect with a professional named Jen. Jen is a special education teacher by training, but also works on developing in home management plans for children. She works with a colleague who is a clinical psychologist. Jen was easy to talk with, and listened. She also agreed to come to the hospital today to meet briefly with Peter and I. When we met with Jen, Denise (our social worker) came by and joined in on the meeting. It was very important that Denise joined us, because she added a lot of value to our meeting, and gave a third party perspective which was very helpful. The wonderful part about all of this is I think I have found a very qualified tutor for Mattie to help him get back up to speed with his course work. It is my intension to connect Jen with Mattie's lower head of school soon. In addition, Jen is bringing her colleague with her to the hospital next week, and together they will administer us some psychological instruments so that we can pin point what Mattie's issues exactly are and design goals to address them specifically. Peter and I are happy about this assessment opportunity, because right now, it seems that medicines are just being thrown at Mattie in hopes of solving his emotional issues.

I was in a terrible mood all day, and I think there are two explanations for this. The first is that I can't stand seeing Mattie in so much pain and so upset. Unlike yesterday, today, I truly believe he is experiencing some sort of valid stomach pain. I say this because the anxiety and depression medication are not at all helping with his stomach issues. The only thing that helps is morphine. The second issue, which is my issue and not Mattie's, is that I am deeply upset that my hospital community that I have been a part of for 10 months shut down on me today, and I felt wasn't helping me meet Mattie's psychological needs. I felt in a way abandoned. I am sure that wasn't the intension, but that was definitely my perception. Peter and I are tired and worn out, and what energy a typical parent would have to try new things and pursue referrals we just don't have. The fact that I had to explain my feelings only further upset me as well.

Tonight Peter and I decided, after a reading an e-mail message from Linda (who reported that Mattie enjoyed having both of us at the hospital today), to stay at the hospital. Neither one of us went home and it is our hope that with both of us around Mattie will feel more secure, and also be able to more effectively address what issues arise. When Mattie gets in a tirade, it takes one of us to calm him down and another one of us to seek help. So this is our strategy for tonight!

I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "This one is for those people who continue to help with everything, often without being asked! Things continue to be challenging, more so than most of us could possibly deal with on a daily basis. Some days are good, some feel like a difficult detour while others seem like a U-turn in the wrong direction. I would have to call Tuesday one of the latter ones. I think Mattie has reached the end of his emotional resilience for now and his reserves have run dry. I can see that in you and Pete as well although as adults you keep going even though the "tank is empty". Unfortunately, children are not able to do that and that makes dealing with Mattie even tougher. I am glad you got through to the staff and got Mattie some medications; getting the dose right especially when you have to deal with multiple medications is a balancing act on a tightrope; one small mistake and you are over the edge. I know you are really upset at the situation with Mattie's central line as well and having a central line infection after all this time is really a disappointment. However, I will tell you it is only your amazing work that kept it from happening sooner; central lines are incredibly prone to infection. I know of very, very few who managed a line for any length of time without an infection. I hope it clears up quickly and you can start getting Mattie ready for the next big hurdle in June-the chest surgery. My prayers are with you."