Tuesday, June 16, 2009

Tuesday, June 16, 2009 -- The key words of the day are PAIN MANAGEMENT!

Quote of the day: "Where hope grows, miracles blossom." ~ Elna Rae

Mattie had a very restless night of sleep on Monday. I find nights particularly challenging. Things are quieter around us and though I know I have a world of supporters behind us, there are times I feel like I am alone and isolated. Or maybe it is 11 months of this torture catching up with me emotionally. None the less, it was a long night. I stayed up with Mattie and helped with the chest x-ray around 12:45am. That went well, and we learned that the diminished lung capacity that the radiologist saw post-op, wasn't there on the right side. But it moved to the left side. So it is not a collapsed lung at all like I initially reported, but as Mattie is stationery, recovering from surgery, on anesthesia, and not taking deep breaths, deminished lung capacity is bound to happen. From 3-6am, I literally shut off, and I was completely unaware of anything happening in the room. It was during that time that Peter was up and focused on Mattie's care. However, a lot happened during those three hours so I feel I missed a great deal. For instance, Mattie's art-line (An arterial line, or art-line, is a thin catheter inserted into an artery. It is most commonly used in intensive care medicine to monitor the blood pressure real-time (rather than by intermittent measurement), and to obtain samples for arterial blood gas measurements. It is not generally used to administer medication.) started to bleed during these hours, and because his oxygen level was decreasing, they gave him more oxygen through cannulas in his nose and also decided to cut back on the pain medications, because Mattie's breathing was too shallow.

Peter took two pictures of Mattie today. I am actually happy he did this because it shows two things. First it shows how wiped out Mattie is from surgery, and second, it somewhat (in a purposefully modest way) shows all the tubes and equipment Mattie is attached to. I always find it entertaining when doctors think that a child is therefore going to freely want to sit up and move about, when attached to all these lines. Amazing! Here is a list of things connected to his body right now.

1) Two pressure cuffs on his legs to prevent the formation of blood clots

2) A Foley catheter to capture urine, since he is not able to move or go to the bathroom on his own

3) An art-line in his right wrist to measure blood pressure and blood gases

4) An IV in his left wrist in case other medications needed to be administered

5) Two chest tubes about a 1/4 inch diameter. Chest tubes are inserted to drain blood, fluid, or air and to allow the lungs to fully expand. The tube is placed between the ribs and into the space between the inner lining and the outer lining of the lung

6) A blood pressure cuff attached to his right leg

7) A pulse oximeter attached to one of his toes to indirectly measure the oxygen saturation of his blood

8) An Epidural in his back to manage pain

9) Three ECG leads attached to his chest

10) Nasal cannulas so he can receive oxygen

11) His broviac lines are connected to maintenance fluids!

I don't know about you, but that seems like A LOT of things to be connected to for such a tiny body!

Mattie is also running a post-op fever, around 101 degrees. That did not surprise us since he ran a fever after both of his limb salvaging surgeries. This is the body's normal and automatic response to surgery. Mattie continues to be in a lot of pain today, so clearly the goal of getting him sitting up in a chair NEVER happened. Mattie needed continuous pain meds to make it through the day. However, between Brenna (our fabulous night PICU nurse) and Ashley (our wonderful PICU nurse today), Peter was able to piece together the important aspects of Mattie's post-surgery recovery process. In a nut shell, Mattie's recovery is proceeding as expected (which is great!). When lesions are removed from the lungs, the procedure literally causes tiny holes on the lung lobes. So in essence when a lesion is plucked out, a hole is created in the tissue. This whole concept is hard for me to grasp, so I always interpret things I don't understand in terms of food items. I don't know why I do this, I have done this all my life, but some how that is how my brain processes things. I think this surgical procedure is analogous to a donut. In terms of a donut you have a round piece of dough, but when you flatten it a bit and remove the center, you are left with a ring and a hole in the center. So applying this to Mattie, the ball of dough is Mattie's lungs. When you remove the lesion, or the center of the donut, you are left with a hole. In the lungs this hole must be stapled closed, otherwise air will not flow properly and will leak into the chest cavity. In all reality the lungs are a closed air system. Air flows into the nose and mouth and into the lungs, and out. It doesn't flow into the lungs and get absorbed into the chest cavity.

However, with lung surgery, chest tubes are always placed into the body for several days post-op in order to drain blood and other fluids from the surgical site. These tubes prevent the lungs from collapsing, particularly if air is leaking from the sites that have been stapled. In fact, if air leaks from these surgical sites, and it isn't captured and removed, it causes a build up of pressure in the chest cavity, and this pressure can push back on the lungs and collapse them, a condition called pneumothorax. This is considered a potential medical emergency.

Though Mattie was sleeping, he was a popular fellow today. Jane, one of Mattie's former PICU nurses who is also a nurse educator, brought her class of nursing students into Mattie's room to observe his chest tubes. Jane asked for my permission, and since Mattie was comfortable and pretty sedated, I agreed to participate in this training process. Even in Mattie's weakened state he is educating others! Ironic!

Ashley, Mattie's nurse, also got Mattie to blow a couple of bubbles today from bed. He was somewhat out of it, but complied. I am so proud of him, because he is handling such complex and painful treatments like a trooper.

This afternoon, Ann came to visit us in the hospital and brought us a lovely lunch. She got us out of the room for a little while, but we couldn't stray far, we stayed in the hallway, because Mattie is clingy and really needs our presence. Thanks Ann for your support today! I am so happy Peter was able to take most of this week off of work. His presence is crucial to Mattie's recovery process, because I have observed under times of great stress, Mattie needs Peter around. He gets very upset if he isn't there with us. So Peter is basically tied to Mattie's side, and ironically I have a little more freedom. As a mother, I feel comfortable freely admitting this. Sometimes we get upset when our children turn to their father's first for comfort. After all, we as moms are there through the daily grind of care. So at first when Mattie needed Peter these past two days, I was somewhat hurt. But then I stepped back and understood that Peter and I give Mattie different things, and we meet different needs, and that is perfectly fine. Between the two of us, we have Mattie covered. I even hate admitting this feeling, but I guess I was hurt because Mattie's care is my sole focus in life now, and when I perceive not being needed, I felt lost. Don't worry though, I am finding my road map and was able to put things into perspective.

Peter and I haven't really left Mattie's room today other than for maybe for 20 minutes for lunch. Other than that, we are sitting in a room, with the lights off, no TV, and no noise. In addition, because Mattie is running a fever, the room is being kept cool. I have felt frigid all day, and just can't seem to get warm. This is not a feeling I manage well. In addition, the unit is establishing a new security policy with locking down doors. Well somehow between these changes and my current feelings, I am definitely serving my own prison sentence.

When I walked out in the hallway today to get Mattie ice for his ice packs, which sit on top of his chest tubes to ease the pain, I bumped into Anne, a PICU nurse. She said the floor received a wonderful donation of a large stuffed animal today, and she handed the dog over to me to give to Mattie. Meet our newest addition in the picture. I can't wait to see Mattie's reaction when he is feeling better. I snapped a picture of our fluffy friend, and he is about half my height!

Mattie was visited by Dr. Chahine today, who checked on Mattie's recovery process and discussed the removal of the chest tubes on Thursday. This is going to be a painful removal process, because Mattie must be conscious for the removal. This deeply upsets me, but I understand the medical reason for this, to prevent pneumothorax. We were also visited by Dr. Toretsky and Dr. Synder today. Both have been Mattie's oncologists over the course of this year.

We would like to thank the McSlarrow family for a very generous and tasty dinner. Alison, I started this cancer journey with a quesadilla obsession, and I think I am going to end with one too! It brought a smile on my face that you remembered!

I end tonight with four messages I received. The first one is from my friend, Charlie. Charlie wrote, "What a relief to have the surgery over even though the path to recovery is yet ahead. Clearly your decision to go forward with the surgery was the right one and all of us are delighted Mattie came through it so well. The outpouring of support is amazing and heartening; for everyone who checked in on the blog or by email there were others who checked in via other people so the number who were out there praying and sending good thoughts was amazing. Many thanks to those who made this miracle happen and may the Lord watch over Mattie and those who continue to care for him and guide them in his care. We are all relieved that coordination seems to be the watchword of the day and that everyone is on the same page with respect to managing Mattie's pain; I hope it remains that way."

The second message is from a RCC mom and friend, Ashley (many of you may recall that Ashley led Mattie's prayer night in the Fall). Ashley wrote, "I just read the blog, Vicki. wow!! what a great testimony to the day. I held Mattie and his doctors in the light yesterday--this is my new way of praying. When I feel like words can't reach the depth of the situation, I picture the person(s) being held in a glowing light. So I held Mattie and his care team a glow yesterday. But your blog is so amazing from yesterday. I loved your three miracles and how you can interpret these moments that might appear as insignificant as incredibly important. What a gift and a tool for survival and strength. your witness is a reminder to how I should look at my day--I'll be more intentional today about how I am seeing and experiencing what is in front of me. Oh, and I love Charlie's prayer. Beautiful! Ironically, I'm feeling so happy right now after reading your blog about life and survival. I'll stop my brain from over interpreting and lift up my happiness to the mystery, power, and strength of community. Yesterday, the human community got it right."

The third message is from a colleague of Peter's, Melissa. Melissa wrote, "Hi, how are you all holding up today? I hope you managed to get enough sleep after such a grueling day and that Mattie is sedated enough not to feel any post operative pain or discomfort. I know you're surrounded by generous friends and family caring for you every step of the way. I'll add my prayers for you to the effort with the greatest hopes that it helps in some small way. You're all so extraordinary and pulling through like champs. There should be a new category added to Nobel prizes with all of your names on it in recognition of the capacity of the human spirit to overcome the worst adversity."

The fourth message is from a former SSSAS teacher. Caroline was also Mattie's piano teacher and has now become our friend! Caroline wrote, "I am so sorry that I haven't been in touch with you sooner. Life has been a whirlwind for me over the past month- it all started right around Mattie's walk! As you know, I have had many orthopedic surgeries over the past few years, with at least 2 more to come. My doctor moved his practice from Baltimore to West Palm Beach, FL. I had long accepted the fact that I would be spending the next two summers in Florida recovering, and that was that. Right around Easter time my doctor called me up and asked me to him a favor- monitoring blogs, etc. and at that point he asked me if I would be interested in moving to Florida, but he was nonchalant about it, and I never took him seriously. Besides I love SSSAS and I love teaching. But he kept after me, and right around Mattie's walk, he asked me to come down and just visit to see what I think. So I did and I loved it. I am now the Program Coordinator/Education Director of the Paley Advanced Limb Lengthening Institute in West Palm Beach. This summer I am working with all aspects of the practice, coordinating the efforts of all involved- physical therapists, social workers, child life workers, etc. and then as things get underway, I will begin the education effort, as hopefully we will be starting a school for the children who require months of treatment. Bob Weiman and Joan Holden (the assistant head and head of SSSAS) were very supportive. They said that not everyday an opportunity like this just falls out of the sky. Plus I still have to have 2 more surgeries, so this makes tremendous sense for me in the moment. Many things in life have prepared me for this next step, especially Mattie. Seeing what you all have gone through, and continue to go through has opened my eyes in many ways. Mattie's bravery in the face of adversity illuminates the human spirit, and the way our collective communities have come together to help Mattie has been inspiring. All of these lessons I bring with me to my new job.Unfortunately, I have already moved, and somehow managed to begin June 1st. I wish I had had a chance to say goodbye to Mattie, but then again, this really isn't goodbye. My family lives in Baltimore, and I will be back to visit often. I am going to be wearing my Mattie miracle shirt to work on Monday. Please know that I will be praying for you all throughout the day and beyond. I know these past weeks have been particularly taxing, but stay strong- you continue to inspire hundreds if not thousands of people. Mattie has taught me so much and wish I could be there for him as he recovers from this next lung surgery. Perhaps we could skype."