Friday was not a good night at all. Mattie had trouble falling asleep, and in fact, he developed another fever which required him to take Tylenol. That may not sound bad, unless you have experienced the art of giving Mattie oral medications. Mattie finally went to bed, but at 4am, he woke up in pain and with intense chills or rigors. I knew exactly what was causing that, it was another delayed reaction from MTP-PE which was administered earlier in the day on Friday. We called Kathleen (our wonderful HEM/ONC nurse) into Mattie's room and she called the resident and it was decided to give Mattie more Tylenol for his rigors at 4am. That wasn't a pretty picture because Mattie did not want to take oral meds, he wanted something through his IV. But we all held our ground and Mattie did take the Tylenol and within 20 minutes he calmed down and went to bed. I found it interesting that after six days of Mattie turning me away, the tide has turned. At 4am, he needed me. In fact there were many times today he melted down into tears, and my presence was requested. So as Peter jokes with me, the A team is back and he returns to B status (which OF COURSE isn't true, but it got me to laugh!).
With the night, week or months that we have had, none of us could get up this morning. I want you to know that despite sleeping and being covered under blankets we had a steady stream of visitors in our room from 7:30am on. By 8:30am, I couldn't take it anymore, because someone came into the room and basically said good morning to us in a loud manner. I think she thought one of us was going to respond to her, when none of us did she got the hint and left the room. You really have to wonder. Are people who work in a hospital just insensitive or have they become so desensitized to seeing pain that the way they cope and deal with their jobs is to perform them in a robotic manner? Certainly this attitude is in the minority at Georgetown, but there is an under current of it, and when it hits me, I don't handle it well. I am not sure, but I get so frustrated with these types, because I would actually like to track this person down from this morning and give her a true picture of what life is like for us on a daily basis. I think there should be a mandatory course in empathy (which is truly understanding how someone else is feeling, as if you are the other person) for all hospital employees.
I think what has profoundly upset me this week is the TOTAL lack of control we have in our lives. Living in a PICU is hard enough, but when you recover from a massive surgery, this causes
multiple visits from various professionals around the hospital. Of course these visits are necessary in order for Mattie to heal. But I assure you it is HIGHLY unsettling to have your door open almost every 5 to 10 minutes. For example, this morning I got up and I wanted to take a shower and get ready for the day. As some of you may recall in previous blogs, I can't get my mind together for the day without a shower. It is my equivalent to coffee, which I do NOT drink or like. Well this morning I attempted for two hours to make it into the shower. But with non stop visits and issues arising, it did not happen. I guess in the grand scheme of things I shouldn't care what anyone thinks I look like, but this is the last thing I have control over, and when you mess with that, I become super edgy.
Dr. Gonzalez and her residents rounded this morning on Mattie. Mattie was less than happy to be examined. In fact, he kicked Dr. Gonzalez several times. Of course I felt embarrassed, but I know Dr. Gonzalez can handle Mattie and hold her own. So I always put that into context. I also don't blame Mattie. As I am frustrated by constant interruptions, I can only imagine how he feels. There is NO time to heal and rest. Rest does NOT happen in a hospital! As Peter reminds me, Mattie just had massive chest surgery, so it is understandable that Mattie would need intense monitoring and visits from various professionals. True, but that doesn't allot much time to recover in peace. At the moment, I am so upset with the respiratory therapists who come into our room at their will. They do not make an appointment with Mattie or give him a time to expect their visit. There is NO transition time, they just expect to show up and Mattie will perform these routine and boring exercises. This has happened each and every time they visit. Tonight, I just sat down at 9pm, and Peter was sitting in bed with Mattie, and in walks another respiratory therapist. This caused Mattie to become very upset, he cried, and basically said he doesn't want to do the therapy. Of course that isn't an option, but if the therapists helped to empower him or invited him into the process, I know they would get much further. So I have reached my tolerance level and I feel the need to assert myself yet again into the process. These pop in visits do not work for me and they especially don't work for Mattie. So this is my next mission to work through, because I know Mattie needs to do the therapy in order to expand his lungs, which will enable him to get off oxygen and eventually get home. However, if he is turned off to therapy, then this slows down our discharge process. So now I have to advocate again to find a way to get all of this to work. God help the kids who are going through this stuff by themselves in the hospital!
I want to share a funny story with you. Some of you may recall that Dr. Bob named all of Mattie's limbs back in October. Mattie's left leg is named, George. His right leg is Steve, his left arm is Sam, and the right arm is Harold. Well the whole PICU knows these names. The HEM/ONC resident told me that in Mattie's chart, there is a stick figure drawn. The stick figure has all the names of Mattie's limbs listed on it. I was stunned. In fact, Mattie's left arm is swollen today, and Dr. Gonzalez wrote for an x-ray to be taken of the arm, the order on the x-ray was that a scan should be taken of "Sam, " ie, Mattie's left arm. I was just hysterical! That is where the fun of the day ended. On an aside, Dr. Bob sent me a message today and let me know that Mattie's x-ray was normal. So nothing is technically wrong with Mattie's left arm. Here is another physician who works at all hours to meet the needs of his patients. We are lucky in that sense to be surrounded by such dedicated doctors.
In my assessment, Mattie is VERY depressed today. Almost non-responsive. He just stares off into space and is totally disengaged from everything and everyone around him. He had moments of activity today, but for the most part clearly wasn't himself. It is very sad to see Mattie just sitting in bed and looking so SAD. This is NOT how a seven year old should be living his life, nor should Peter and I have to witness this. This profound sadness we have experienced this year, does take its toll out on us both physically and mentally. So I saw enough today to know that Mattie will begin taking his anxiety medication again. He continues to take Celexa for depression, but just like after his surgeries in the Fall, he may need more help to stabilize his mood. I just hate adding more medication to his already full plate. Since he is currently on a fentanyl transdermal patch, roxicodone, and occasionally IV Morphine. This should give you a full understanding of the magnitude of Mattie's pains.
This afternoon, two physical therapists came by to visit Mattie. Again, I did not know they were coming, but they walked in and were ready to go. Needless to say, Mattie wasn't prepared. I am SO tired of playing interference between others and Mattie. I know this is a role of a parent, but after 11 intense months of this, there are days I want to say, GIVE ME A BREAK! But then of course, I stick that thought some where and mobilize into action. So Vivian and Andrea (the therapists) encouraged Mattie to get out of bed. Peter did all the transferring, and I think the therapists were amazed. Not sure why? Since Peter and I have learned how to meet all of Mattie's physical needs. Dr. Gonzalez wanted Mattie to get fresh air today. So once in his wheelchair, Peter took him outside of the hospital. Andrea was pushing the IV pole, and Vivian was pushing the portable oxygen tank. I just felt the need to capture this caravan in motion! Mattie actually fought us all the way. He did not want to leave his room, or his bed, and he most definitely did not want to go outside. But we managed!
This afternoon, I encouraged Peter to leave the hospital and get his hair cut. I can't give him anything for Father's day at this point, but a moment to himself and an opportunity to get away. In fact, Peter is going to three Red Sox games next week, so I guess in essence that gift of time is his father's day gift, I don't know. He doesn't want to go because this means I have Mattie for three long days and evenings, but I know this will be good for him. He loves the Red Sox (though I have learned that Red Sox fans do not only have team spirit, I am quite sure they are part of a cult :), and one of the nights is a fundraising opportunity for Mattie (thanks to all of you who bought Red Sox tickets for Tuesday night at the Nats Stadium in support of Mattie!).
While Peter was away, Dr. Chahine visited. Are you getting the picture for the type of surgeon he is? Coming to visit a patient on a Saturday? Amazing. I think Dr. Chahine is quite impressed with Mattie's progress, and I agree, Mattie is amazing.
When Peter got back to the hospital, he and Mattie completed this Star Wars Republic Attack Lego Shuttle. Peter was flying it around the room, and I snapped a picture of it.
I would like to end tonight's posting with two messages. The first one is from my friend, Charlie. Charlie wrote, "I am so happy to hear the good news about Mattie's surgery and the removed tumors. Negative margins are truly a blessing in this situation especially. I am hopeful that the right combination of chemotherapy will keep these from returning post surgery. I know you are exhausted and feel you are ready to leave the hospital after five days in what must seem like lock down. As confining as it is however, assistance is close at hand so you really don't want to leave before Mattie is ready to go. I am so glad that your choice of venue and doctors was right; it speaks volumes for taking some time to do the research even in a very time sensitive situation. It sounds like Dr. Chahine is everything you hoped for and then some. I love the idea of the wishing fountain, how thoughtful and creative a way to garner both good wishes and money for the Mattie fund."
The second message is actually the lyrics from the Sponge Bob theme song. Thanks Tamra for sending them to me today and for getting me to laugh over this Sponge Bob obsession. For those of you who haven't had the pleasure to see Sponge Bob on TV, I have attached the link to the show's theme song. I have heard it more times today than I care to, so I am sharing the gift (I am being VERY sarcastic I assure you) with you!
Captain: Are you ready kids?
Kids: Aye-aye Captain.
Captain: I can't hear you...
Kids: Aye-Aye Captain!!
Captain: Oh! Who lives in a pineapple under the sea?
Kids: SpongeBob SquarePants!
Captain: Absorbent and yellow and porous is he!
Kids: SpongeBob SquarePants!
Captain: If nautical nonsense be something you wish...
Kids: SpongeBob SquarePants!
Captain: Then drop on the deck and flop like a fish!
Kids: SpongeBob SquarePants!
EveryBody: SpongeBob SquarePants! SpongeBob SquarePants! SpongeBob SquarePants!
Captain: SpongeBob.... SquarePants! Haha.