Saturday, June 20, 2009

Saturday, June 20, 2009

Quote of the day: "Sometimes our candle goes out, but is blown into flame by an encounter with another human being." ~ Albert Schweitzer

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!
http://www.youtube.com/watch?v=O1A_dcMdrwc

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!
Captain: Ready?
EveryBody: SpongeBob SquarePants! SpongeBob SquarePants! SpongeBob SquarePants!
Captain: SpongeBob.... SquarePants! Haha.

Friday, June 19, 2009

Friday, June 19, 2009 -- The Positive News for the Day... The pathology report came back from Mattie's lung surgery and it revealed negative margins around ALL the tumors and there was no evidence of disease in the pleura. Keep reading for more information!

Quote of the day: "In spite of the six thousand manuals on child raising in the bookstores, child raising is still a dark continent and no one really knows anything. You just need a lot of love and luck - and, of course, courage." ~ Bill Cosby

Last night before I headed to bed, I received an e-mail from Ann. Ann's daughter, Abigail, and her friend, Jackson, created a "wish fountain." I was very touched by the care, concern, and thoughtfulness of these children. Ann wrote, "Abigail and Jackson have made a "wish fountain" for Mattie since they are sad he is in the hospital. They have created this tube structure and they are selling wishes on the front lawn. When a person puts money in the wish fountain, they sprinkle magic fairy dust (grass pulled from the lawn) on the money in the tube and that guarantees your wish will come true. People have been impressed with their creativity (or are just impressed with their salesmanship!) and so far they have made $8.05 for the Mattie Fund. I put my 25 cents in and I had a specific wish for Mattie which I am now sure it will come true!!"

Left: I introduce you to the wish fountain!

Today was another big day for Mattie. All of his IV pain medications were discontinued. I was a little nervous about this, but Mattie handled this transition like a champ. You have to admire how strong and courageous this little body is! Mattie is now on a Fentanyl transdermal patch and Roxicodone (an oral pain medication). Before Mattie's epidural came out this morning, we were visited by Susan DeLaurentis, Mattie's Director of School Counseling at SSSAS. Susan brought Mattie some wonderful Sponge Bob gifts. I added Susan's gifts to Mattie's treasure chest, which he turns to after he completes his respiratory exercises. Thank you Susan for thinking of Mattie, for the coffee and tea, but especially for the walk outside in the sunshine and the opportunity to chat. Susan has been incredibly supportive of Mattie and my family this year, and though today was a work day for her, I appreciate her taking the time to visit us and for getting me to laugh about so many things! I spoke to Susan about how I can't see my life every being normal again, and I don't say this lightly. In a way Mattie's illness is a profound loss and living in a hospital for almost a year now, has made me not only unsure of how to live my life, but I almost feel as if my former life has ended and now, like an old science fiction movie, my body has been snatched up and I am forced to live life in this transformed state.

When I got back to Mattie's room, Peter was with the pain management team, as Mattie's epidural was removed. The removal was easy and painless. Thankfully! Mattie's oncologist, Dr. Synder has visited us every day this week. I really appreciate her support and her energy. Soon there after, Linda arrived and behind her was a huge Sponge Bob balloon (the balloon behind Peter in the picture). So now we have two enormous Sponge Bob balloons in the room and Mattie loves it, and well you know where I am with Sponge Bob! In the picture you will see a few assembled Lego sets on Mattie's bed. Sponge Bob Legos to be specific. Peter and Mattie were playing out a scene as Sponge Bob and Patrick. In fact, Peter is pretending that he doesn't know that a huge Sponge Bob balloon is behind him and he is trying to ham it up, meanwhile, Mattie is laughing because clearly he can see the balloon is on Peter's shoulder, but Peter is acting like there isn't a balloon at all in the room. They had a good time goofing around with each other.

Around lunch time, Jenny and Jessie (Mattie's art therapists) came up from clinic to help Mattie build a Father's day gift for Peter. While this was taking place in Mattie's room, Peter was able to go off campus, and head to our home to pick up some medications for Mattie (medications in a wafer form that the hospital pharmacy doesn't have access to) and also stopped to pick up more Legos for Mattie. I also left the room and waited in the hallway, because after spending five days in this room, I needed a change of venue. While in the hallway, I met up with Dr. Chahine, Mattie's lung surgeon. In fact, today alone Dr. Chahine visited Mattie two times. I can't get over this surgeon's level of commitment to his patients. The ironic part is I interrogated Dr. Chahine in a consultation meeting, when we were deciding which surgeon to select, about his post-surgery follow up with his patients. I wanted to make sure his style wasn't to perform the surgery and then never see him again for the recovery phase (The recovery process is just as important to me as the surgery. I feel Dr. Bob spoils us, because it is eight months after surgery and Bob immediately responds to my concerns and e-mails always!). Dr. Chahine assured me in the meeting that he pays close attention to follow up. However, he was very modest in his answer to this question, because I feel like he has been there every step of the way with us, and I think he gives great thought into the treatment and care of his patients. We made the right decision to stay at Georgetown, because as you know we want NO regrets about our decisions we have made about Mattie's treatment! You may find it interesting to know that Dr. Chahine is a blog reader. This tells me a lot about his character and commitment.

Dr. Chahine told me that he is very pleased with Mattie's recovery. That the lungs are healing nicely and though there was some air within the chest cavity which showed up on the earlier x-rays, there is nothing there now. The surgery was a success! Music to a parent's ears. Dr. Chahine and I discussed a time table for Mattie's discharge and he also confirmed for me that Mattie wouldn't need a hospital bed at home. Fabulous!

I want to thank the Keefe family for dropping off a wonderful lunch today. There isn't a morsel left. Thank you for all the wonderful fresh salads and fruits! Mattie LOVED the watermelon and his new Sponge Bob plate set. Thank you Debbie for visiting and for your family's continued support!

When I got back into Mattie's room, Peter's gift was made and already wrapped up! Mattie was looking at some electronic father's day cards with Jenny and Jessie on the computer. In the picture on the left you will see Mattie, Jenny, and Jessie smiling at an electronic card on the screen. After their computer time, Mattie and I did some more breathing exercises using Brenna's Sponge Bob Lake. As you can see in the picture, I am trying to blow on the character named, Patrick, who is floating in a plastic cup boat. Mattie's Sponge Bob character already crossed the finish line! So naturally I was losing the race, and was still at the starting line, while Mattie had already finished blowing. Of course this only motivated Mattie to further race me, and make me look even more humiliated.

Linda snapped a wonderful close up picture of Mattie while he was blowing through a straw to ensure that his Sponge Bob character won the race. Later in the afternoon, Peter came back from running chores, and Mattie couldn't wait to give Peter his father's day gift. So I snapped a picture of this happy twosome. Mattie designed a boat for Peter out of a cardboard box. It is an impressive boat, with a lovely card attached! Thank you Jenny and Jessie for helping Mattie with this special project.

Mattie and Peter worked on a Star Wars Lego for part of this afternoon, and I gave them their time together, while I did what else, laundry? Of course maneuvering to the parent lounge now is like an obstacle course because of the new security measures they put in place on the floor. Despite the hassle, it definitely is a system that looks out for the welfare of the children. In addition to everything else Mattie had to deal with today, Mattie also got an infusion of MTP-PE. True to form, 30 minutes after the infusion was over, he had a negative reaction with a fever and rigors. Dr. Gonzalez was the attending HEM/ONC physician and she ordered demerol for Mattie to counteract the reaction. It took longer today for the demerol to actually work, and Mattie landed up shaking like a leaf for longer. He eventually went to sleep though, and rested for about 90 minutes. It was during this time that Dr. Gonzalez spoke to me about Mattie's lung pathology results. Dr. Gonzalez made sure we had the results by today, rather than waiting throughout the weekend. I appreciated that thoughtfulness.

Dr. Gonzalez told me the news was good from the report. It turns out that the pathology did confirm that seven of the nine lesions were indeed osteosarcoma. The other two are too small and still need to be studied. Well that news that the lesions were osteosarcoma did not surprise us, but the positive news was that the tumors removed ALL had negative margins. Which means that NO cancer is found in the tissue surrounding the tumor that was removed. So in essence all the detectable cancerous material was removed. Excellent news. In addition, no cancer was found in the pleura. The pleural cavity is the body cavity that surrounds the lungs. The lungs are surrounded by the pleura, a membrane which folds back upon itself to form a two-layered structure. The thin space between the two pleural layers is known as the pleural space; it normally contains a small amount of pleural fluid. The outer pleura is attached to the chest wall. The inner pleura covers the lungs and adjoining structures, i.e. blood vessels, bronchi and nerves. So this is an additional piece of good news, and if we have learned one thing this year, is you EMBRACE whatever good news is bestowed upon you with Osteosarcoma!

We want to thank the Kane family for a wonderful dinner tonight and for supporting us this week through surgery. Later in the afternoon we were transitioned off the PICU service and back to the HEM/ONC team. This is excellent news for Mattie, because that means he is stable. I feel like Mattie has received excellent care this week, and I am grateful for the efforts being made.

Mattie was scheduled to have physical therapy today, but it never happened because Mattie was too ill from the MTP infusion. Mattie has done several breathing exercises, and though he doesn't want to do this, we are trying to impress upon him the importance to be a part of the recovery process. Unless Mattie starts exercising and taking deep breaths, we will be unable to leave the hospital. Mattie is still on oxygen at this point.

I would like to end tonight's posting with three messages I received today. The first one is from my friend, Charlie. Charlie wrote, "Clearly Thursday was a one step forward and two steps back day. Mattie is making progress on physical measures but has definitely done a backslide on his emotional/social side. This is not unusual for either an adult or a child after major surgery. It sounds like Mattie is feeling both physically and emotionally vunerable right now and pushing people away as a result. Even before the surgery Mattie was beginning to develop some sensitivity about how he looks and no one wants people outside of their family to see them when they are uncomfortable about that. I have seen adults refuse to see their spouses or friends when in that situation. Mattie is in a hospital gown again (by necessity with all those lines and tubes) but it can make one feel ugly and vulnerable unlike one's own clothing/pajamas which are comfortable and in which the child often had a choice. I know you are feeling lonely and isolated and others may feel frustrated because they want to come and support you but those who are friends and who have been a part of this from the beginning will see the familiar pattern here and know that Mattie will come out of his "shell" and the company of familiar friends and family will once again be welcomed. It is important for you to do what you can to take care of yourself until that point."

The second e-mail is from my friend and colleague, Denise. Denise wrote, "As I was reading the blog, I was reminded once again of what an incredibly intuitive little guy Mattie is. I hear your sadness and frustration as Mattie appears to push people away. What comes to mind to me is that in his wonderfully creative 7 year old way, he is allowing himself to use all the energy he can muster for his healing. It is as if he is saying-hey guys-I've got a big job to do here and I cannot "do distraction" right now. I cannot imagine how difficult this time is for you and Peter, as well as Mattie. The one thing you do know is that Mattie does come back and connect and we all saw that on the blog. Right now he reminds me of a little kid learning to write-remember how the tongue comes out as we focused really hard. He is focusing really hard to fight the "bone bugs." Thinking of you all and praying that this time will pass as Mattie heals from the surgery and can use some of his healing energy to connect once again."

The third message is from my mom. My mom wrote, "I KNOW that "rejection" hurts and is very painful and hard to handle when it is happening to you. Blame it on the devastating long term effects of his illness, the horrible interaction of powerful meds and the unnaturalness of his living his childhood cooped up in a PICU cubicle and it all makes perfect sense. He has endured unimaginable horrors that would cause normal and stable adults to crack up. All these factors combine to create a life of "childhood torture" and the perfect recipe for antisocial behavior. It is the only way he can release the anger and frustration he feels living in the agony of constant pain. When he has the chance to heal and grow strong, he will shed this "dark" side and emerge like a butterfly from his melancholy state and we will have our dear Mattie back again. Now however, there is to be more chemo. It is wearying to think about much less to imagine what additional punishment to body and MIND Mattie will have to endure and what lies ahead. It is hard to contemplate that he must endure another test of his physical limits but it is the price to be paid to save him from the ghastly scourge of osteosarcoma. You must never FORGET the main objective in spite of the pitfalls and the rocky terrain. You NEED to climb that mountain to get on the other side. You are strong and very insightful and have learned to reconcile your hope for Mattie's success in winning this battle with the temporary setbacks and unexpected shake-ups that occur along the way. Stay focused on the goal and NEVER take your eye off the ball. You have already come very far. Remember, he is counting on you even when he lets out his angst on you. He knows it's OK because you have NEVER and will NEVER let him down no matter what. HE KNOWS THAT AND HE KNOWS YOU KNOW THAT TOO!"

Thursday, June 18, 2009

Thursday, June 18, 2009

Quotes of the day: "In the stillness of the quiet, if we listen, we can hear the whisper of the heart giving strength to weakness, courage to fear and hope to despair." ~ Howard Thurman

"Health is the greatest gift, contentment the greatest wealth, faithfulness the best relationship." ~ Buddha

I had a hard time falling asleep on Wednesday night. It fact I was up past 2am. Some of you may recall that Mattie's epidural stopped working on Tuesday night at 1am, and Brenna (our great PICU nurse) flushed the system and it started working again. Well last night at 1:30am, the same thing happened. Brenna had to flush the epidural filter out again. Every time this happens, this makes me nervous for two reasons. One I am afraid that when the epidural stops working that we may not get it to work again and second, each time the system is opened and the filter is cleaned out, it exposes the line to a chance of infection. I hear an epidural infection can be nasty. Lovely! None the less, Brenna solved the problem two nights in a row, got the epidural to work again, and then trained Mattie's day nurse how to handle this problem if it should arise. Fortunately she did this, since at 1pm today, Julie (Mattie's wonderful PICU nurse) had to flush the filter again because the epidural stopped working a third time. This time Julie called the pain management team and had them come up and replace the filter with a new one.

When I woke up early this morning, the room was dark, but I noticed something on Mattie's room table. So in my stupor, I went over to look at it. What was it? Well Brenna created her own breathing exercise for Mattie. She knows that Mattie is interested in Sponge Bob, so she used a hospital basin, filled it with water, created a racing finish line, and placed a cut out of Sponge Bob and Patrick in a boat made out of a hospital plastic cup. The goal was to get Mattie to blow through a straw and push the characters sitting in a plastic boat to the finish line. Not only was this a creative idea, but I thought it was very special that his nurse would take the time to design something that would benefit Mattie. This tells me a lot about Brenna and her commitment to her patients. Needless to say, Brenna's Sponge Bob Lake breathing exercise was a major hit today.

Dr. Synder, Mattie's oncologist, visited us this morning. She spoke with Mattie about the importance of him doing his breathing exercises. In fact, she wasn't going to leave the room until she observed Mattie doing something to benefit his breathing. At the moment, Mattie is required to do exercises on the hour, because his lung capacity is diminishing. Not unusual considering his surgery and the fact that he is sedentary. None the less, we do not want Mattie to develop pneumonia, and therefore it is important he work with us to gain his breathing strength. Mattie agreed to try Brenna's exercise. I gave Mattie a straw and he started to blow Sponge Bob across the water to the finish line, however, I also gave Peter a straw, because Mattie loves competition. Naturally we were all cheering Mattie on, and Peter was doing a GREAT job losing. Mattie did this game multiple times, he just loved it and it was very good for his lungs. I can't thank Brenna enough for her determination to get Mattie to participate in his recovery.

I want to update you about two things tonight. The first is that Mattie is being transitioned from IV and epidural pain medications to oral and transdermal pain management tonight. When I met with pain management today they said they were going to just shut off the epidural tomorrow. This concerned me greatly, because with the epidural, I am uncertain the level of Mattie's true pain. If you cut the medication off completely this could cause Mattie to have massive pain. I remember that Dr. Bob tapered off the epidural slowly during his Fall surgeries, and I reminded the team about this today. Many disagreed with this approach, but when I spoke to Dr. Chahine about this, he also concurred with Dr. Bob's approach. Thankfully! So tonight, Mattie's epidural is being tapered off 1mg at a time every two hours. So by tomorrow morning, it will be completely shut off. With the dialing down of pain medication this afternoon, Mattie was becoming highly anxious and agitated. Fortunately tonight they started Mattie on oral pain medication and a transdermal pain patch, so he is very comfortable at the moment.

The second thing I want to update you about is that most likely after Mattie recovers he will be given more chemotherapy. I am uncertain of the amount, but because we know that Mattie's lung lesions were growing in size, and the tumors were viable, it does make sense to add more chemotherapy post surgery in an attempt to wipe out any stray cancer cells that were dislodged during the sternotomy. So being consistent with this whole journey, there is no end or break in sight for us.

I had the pleasure (and I am being VERY sarcastic) today to meet two respiratory therapists on the floor who came in to work with Mattie. The first one came into our room when Mattie was sleeping and the lights were off. She entered the room, talked to me at a normal speaking volume and proceeded to put on gloves. Before she even got the second glove on, I told her that she had to be kidding if she thought she was going to wake Mattie up at that time to do breathing exercises. I think I caught her off guard, and minutes later she came in with her partner. But for me, NO means no. So I gave both of them their walking papers and then reported them to Mattie's nurse and the PICU doctor in charge. You have to wonder where the compassion is? They can see Mattie is frail, cut up all over the place, and connected to every tube possible, and instead of understanding the situation and trying to come up with fun ways to engage him, they did the exact opposite. I am an adult, and if I were in Mattie's situation, they would have completely turned me off too. These are people who should not be working with children. However, this evening a lovely respiratory therapist came in and wanted to work with Mattie, but at the moment Mattie is sleeping.

At lunch time today, Alison came to visit us. Poor Alison got to the hospital and was parking just when I called her and told her Mattie needed yogurt. So Alison pulled back out of the hospital and went to the grocery store. When Alison did arrive, she had a HUGE surprise for Mattie. A wonderful Sponge Bob balloon and of course his yogurts. Thanks Alison for a lovely lunch, for the chocolate supply, and for the walk outside. This was my first time outside since Sunday! However, one thing is very clear this week, is that Mattie is NOT open to visitors. We are back to where we were in the Fall. It is a hard thing to accept to see your child being so mean and snappy at others, but then I try to put his feelings into context and imagine how I would be feeling if I were in his shoes. Thanks Alison for visiting and supporting us today!

Later in the afternoon we had a knock on our door, and a surprise visit from our former neighbor, who now lives in NYC. Goli is back in town for the weekend and wanted to visit with Mattie. She brought Mattie some wonderful paints and paper. I have no doubt that visiting Mattie as he is recovering from surgery is difficult. Mattie doesn't even acknowledge visitors in the room, and seems disturbed by their presence. So I felt bad for Goli today, because I am sure she left with the feeling that Mattie neither likes her or remembers her anymore. Of course that isn't true, but I felt badly for Goli as she left our room. It is moments like this where I know things in our life are so complicated. We live a very different life from most of our readers who visit our blog. We live a world of isolation, where a hospital is our second home, surrounded by medications, wheelchairs, and other reminders that NOTHING is normal for us anymore. Frankly I am not sure we will ever be the same, our world and lens have been completely shattered and at this point I can't imagine ever feeling well again.

This evening I took a picture of Mattie surrounded by his Sponge Bob items. Featured in the picture is Alison's Sponge Bob balloon, as well as the stuffed Sponge Bob doll on the bed and video of Sponge Bob that Linda gave Mattie. So I have gone from disliking Sponge Bob to being surrounded by him. Talk about desensitization!

We want to thank the Hurley family tonight for a lovely dinner, so beautifully presented. We also appreciate the watermelon and cookies. Your note brought a smile to our faces especially since it was on Mattie's Mr. Sun note cards! Thanks for supporting Mattie!

Mattie slept a couple of hours this evening, but by 9pm he was up. Mostly because an x-ray tech came in to take a chest film of Mattie. The x-ray tech gave us a hard time because Mattie wasn't wearing his ID bracelet. She refused to take the x-ray in fact. Mattie never wears his bracelet, but it is taped to his bed, and we were there to verify that he was Mattie. But she did not care. Thankfully Sarah Marshall (one of our fantastic HEM/ONC nurses)was there to help us and she got Toby (the PICU nurse manager) involved to help us mediate this interaction with the x-ray tech. After the daily x-ray, Mattie was visited by Mike, a respiratory therapist. Mike also had a sternotomy a couple of months ago, so he and Mattie had a lot in common. Mattie did several great breathing exercises (he started with Brenna's Lake invention, I think that would have made her very happy!) tonight and then earned himself a trip through the treasure chest of toys that Linda created for Mattie. As I type this blog, Mattie and Peter are busy building a (WHAT ELSE?) Sponge Bob lego!

I have found that Mattie has continued to shut me out of his world today. In fact, when Alison visited, he threw Alison and I out of the room. I completely understand he isn't feeling well and wants this time with Peter (he feels that Peter "protects" him), but that doesn't give him the right to treat me like he has. So Peter and I both spoke to Mattie about this tonight, and as the evening wore on, he tried to open up and include me in his play and other activities. None the less, I am worn out and his attitude, anxieties, and other reactions at this point are so much more than I can bear and handle. It is amazing how everything seems 100% harder when you are so sleep deprived.

As we head into Friday, it should be an interesting day. A day without an epidural and IV pain meds. Keep us in your thoughts and prayers! I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Getting Mattie well will be a process with some forward and some backward steps. I think he's doing amazingly well considering what he is going through. He is fortunate to have a mom who pays such close attention to details or the situation with his epidural pain relief really could have turned into a crisis. Fortunately you were attentive to what is going on. Additionally getting the time of the chest x-ray shifted to a more reasonable one so that you and Mattie did not have to be disturbed really early in the morning was a good move as well. Not many parents are as assertive as you are in making sure that things are done to benefit the patient and not the hospital schedule wherever possible. I hear that you are hurt by Mattie's preference of Peter right now but we all know from the past 11 months of the blog and seeing you together that Mattie is very attached to you and he loves you deeply. It is hard to know what goes through the mind of a child particularly when the child can't communicate very well due to illness so I am not sure how helpful speculation is, but, Peter normally is only around full time in the most serious parts of the treatment. Perhaps Mattie senses this and feels if Peter is at the hospital, then Peter is supposed to be kept really close as his protector at these most vulnerable times. Maybe the answer will come out later in play or not; however, either way, it is clear that his relationship with you continues to be very strong and very critical in his recovery."

Wednesday, June 17, 2009

Wednesday, June 17, 2009

Quote of the day: "Hope is faith holding out its hand in the dark." ~ George Iles

Mattie had another challenging night on Tuesday. At one point it was around 11pm, Peter decided to take a nap and Mattie was resting. I was working on the computer, and through our room door enters Dr. Chahine, Mattie's lung surgeon. I was surprised to see Dr. Chahine at that hour, especially since he checked on Mattie around 3 to 4 times yesterday. I am very impressed with his follow up with his patients. Dr. Chahine let me know that a chest x-ray would be ordered each day until the chest tubes were removed and it was also to assess that no air was leaking from the lungs. After the doctor left, Peter and I wanted to find out when the x-ray tech was going to show up in Mattie's room. After 11 months in the PICU, we now know the questions to be asking. We know that tests are NOT done at the patient's convenience, but for the convenience of medical doctors. Particularly results need to be ready for the doctors when they round in the morning, which could be at 8 or 9am. So I sent Peter out to ask Brenna, Mattie's nurse, when the x-ray was going to be taken. Peter came back into the room and told me 5am. Of course, that is all I needed to hear. So I picked myself up and went out to talk with Brenna. Brenna is a very capable and competent PICU nurse, and though there are standard procedures followed within the PICU, once I explained my position about the x-ray, she got it immediately. So in essence Mattie received the x-ray at midnight, rather than 5am. Brenna is an amazing PICU nurse, who is both compassionate and a great motivator for Mattie. In fact, before she leaves her 12 hour shift, she always comes into Mattie's room and writes him a positive and upbeat note on his dry erase board. Kind of like a goal and motivator for the day! That attention to detail and connection to her patients speaks volumes to me, and it is greatly appreciated during this time of crisis for us.

After the x-ray, we all tried to go to sleep. However, at 1am, I woke up to an IV beeping. I jumped up and noticed what was beeping was the epidural pump. Not a good sign! So I called in Brenna, and I could see Brenna went into action. I continued to grow concerned, and then remembered that during Mattie's second surgery, the epidural also stopped working because it developed an inclusion from an air bubble. So I told Brenna that when that happened, the filter of the epidural line had to be flushed out. Brenna came back minutes later after consulting with an anesthesiologist, and flushed the epidural filter. Sure enough, that did the trick and it worked beautifully. Brenna and I were thrilled, because if the epidural did indeed stop working, Mattie would have had a difficult night filled with pain. As I mentioned before, things just seem more ominous at night, but with Brenna on the scene, it does alleviate my concerns.

This morning, while Mattie was sleeping Linda came by and brought in a treasure chest filled with Sponge Bob prizes for Mattie. This is an incentive treasure chest. Linda also made an incentive chart featuring Sponge Bob. Every time Mattie does a breathing exercise, he can give Sponge Bob a Krabby Pattie on the chart. When Sponge Bob obtains four Krabby Patties or so, Mattie can pick out a prize from the treasure chest. It is very creative, and certainly meets Mattie's most immediate interest. In addition, Linda also brought us a gift from Meg, one of Linda's former childlife interns. Meg and Mattie were good buddies and they clicked together from the first moment they met each other. Meg wanted to support Mattie through this major surgery, and sent him some amazing gifts. The first gift was the prayer blanket that is featured in this picture. Notice the BUG theme! Meg and her mom made this blanket for Mattie, and her friend embroidered Mattie's name on it and also included a passage from the Bible [Isaiah 40:31 - which but those who HOPE in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint]. In addition to this beautiful blanket, Meg sent several BUG items that Mattie will also enjoy! Along with these lovely gifts, Meg also wrote a beautiful card to us. I wanted to share a few of the sentiments Meg wrote to us. Meg wrote, "I just wanted to write y'all a quick note to tell you thank you for letting me have a small glimpse of your lives and the love that surrounds you all. My experiences at Georgetown are full of beautiful memories and times I got to share with you and your beautiful son! I feel that my internship would have been lacking if I wasn't blessed to play with Mattie. His heart, courage, and strength can only be a reflection of wonderful parents. The three of you have made a huge impression on me and Mattie has touched my heart in a way that I never could have imagined."

I have TWO very exciting things to report today. The first is that Dr. Chahine assessed Mattie's chest tube output and chest x-rays and determined just two days after surgery, that Mattie's chest tubes could come out. This caught me off guard, because I was expecting this to happen on Thursday. Dr. Chahine explained that the process to remove the tubes, which meant that Mattie had to be very conscious and alert, so that he could participate in the removal. Participating in this process means that Mattie needs to scream and cry. Why? Because when you are screaming, this forces you to exhale, which in essence compresses the chest cavity, forcing air out through the wind pipe as well as the holes in the chest cavity where the chest tubes are located. So with air being forced out, there is no way air can get into the chest as the tubes are being quickly pulled out. Clearly this is a skill, because if done incorrectly, air can get sucked into the chest cavity during the tube removal process, which could in essence cause the lungs to collapse. Though I remained in Mattie's room during the removal of all drainage tubes that Dr. Bob placed into Mattie, I wasn't as brave today. I decided to remove myself from the room, and Peter stayed with Mattie along with Dr. Synder (Mattie's oncologist). While I was waiting for this procedure to be over, I had the good fortune to talk with Maria, one of the PICU administrative assistants. Maria showed me pictures of her son, and we got to talking about raising children. This conversation caused me to forget my worries for a moment, and by the time we were finished, so was Mattie's procedure. Though I told Maria how grateful I was to chat with her today, she may not fully comprehend that I was nervous and scared, and having someone to chat with made a big difference to me.

Mattie is still on an epidural. The epidural dosage today was increased because Mattie had a night of moaning and pain. Also the goal is to prevent Mattie from being so sedated (from IV pain meds), and instead focus the medication on the site of the pain (which is what the epidural accomplishes). In addition to the epidural, Mattie received a bolus on Morphine through his IV, so that the chest tube procedure could be performed on Mattie with some comfort. Mattie handled the chest tube removal like a champ. He really wasn't screaming, but talked and conveyed his level of discomfort to Dr. Chahine. I was so proud of him.

The second major accomplishment today was that Mattie was transferred, thanks to Anna (Mattie's physical therapist) and Julie (his wonderful PICU nurse today) to a chair. He remained in the chair for little over an hour. While in the chair, Mattie was supposed to perform breathing exercises, but he was just too tired. Understandably due to the major surgery, chest tube removal, and of course the transferring itself. So we were happy with whatever he accomplished today. I snapped some pictures of Mattie in the chair. Congratulations to Mattie, we are ALL proud of him!

Left: Mattie and Peter worked on a Sponge Bob Lego set. Thanks Linda for this great treat in Mattie's treasure box. This is just what he wanted!

Right: Mattie asleep in the chair with a stuffed Sponge Bob.

This afternoon, we were visited by Charlotte's mom, Ellen. We want to thank Ellen for the lovely lunch she brought us. Thanks for chatting with me for about 20 minutes before I was summoned back to Mattie's room. It is ironic, this week Mattie is completely relying on Peter, yet despite this doesn't want me to stray far. I am not sure why Mattie's clear disinterest in me bothers me so much. Rationally I understand it, but none the less I find myself somewhat lost and not sure what my role is, or what to do with myself. In fact, in the midst of this I landed up yelling at Peter because I feel so cut out of the process. This is the first time, because of Mattie's behaviors, that I feel as if Peter and I are unable to work as a team, which isn't a good feeling. I fully admit I am tired, fed up with this disease, and in the midst of dealing with all of these emotions, I am hyper sensitive. Needless to say, Peter and I worked this out.

We would like to deeply thank the Ferris family today from dropping off a surprise gift for Peter and I. Junko, THANK YOU for the heating pads. I really needed them, because I am frozen from head to toe in Mattie's hospital room. The heat is helping tremendously. What can you say about a friend who reads about your problem and immediately takes action to address it? I am grateful. We also can't thank you enough for the special certificates to the Four Season's spa. In the midst of the week we are going through, your generosity and thoughtfulness truly fills our hearts.

We would also like to thank the Kelliher family for the wonderful dinner and support you are giving us this week as Mattie recovers from lung surgery. The fresh strawberries were a special treat!

This evening, Brenna was back to care for Mattie. We have had Brenna three nights in a row. Mattie and Brenna have a good rapport, and Brenna changed Mattie's central line dressing tonight as well as changed the bandages over the openings where his chest tubes were. One of the incisions is still leaking fluid a bit. I had the opportunity to see the holes left in Mattie's chest from these tubes tonight. It is just a daunting and overwhelming sight to see Mattie's body cut up SO much and of course in so much pain.

It is now almost 11pm, Mattie is wide awake and watching a Sponge Bob video that Linda brought Mattie. She knew this would be something that he really wanted to see, and I appreciate Linda checking with me to see if I was okay with this. At this point, if something is going to motivate Mattie to either walk and/or breathe deeply, I strongly consider it!

As we head into Thursday, I know the goal will be to get Mattie out of bed again and get him to do his breathing exercises. There are respiratory therapists who have given us a gadget called an incentive spirometer, in hopes that Mattie will take deep breaths and fill his lungs to capacity. Great in theory, but most likely if it isn't a game, it isn't going to work for Mattie. So we have our work cut out for us. I personally can't believe it is Thursday already. The whole week is a blur, mostly because we haven't left our room, we are monitoring Mattie 24 hours a day, and most likely because we are just incredibly frazzled. The recovery process seems almost as daunting as the surgery!

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "In some ways the first few days post surgery are worse than the day of surgery. When your loved one is in surgery, there is nothing you can do but wait and pray, every thing is in the hands of G-d and the surgeon and you are free to pace when and where you wish. Once in recovery or ICU, you are now tied down and you feel you should be able to DO something even if you can't actually do anything at all. This is both frustrating and exhausting. Although it is difficult, try to let Peter help as much as possible because if Mattie wants his dad, you can take the opportunity to rest. It is better (and safer) if one of you is as rested and coherent as possible. Additionally, Mattie will need you more once he reaches a point where he is less sedated and you will need all the energy you can muster. I love Ashley's description of "holding you in the light" and I will use that today when praying for Mattie's recovery and relief from pain. If anything at all comes through in the confusion that is typical of post operative time, know that you are not alone even at 2 AM; at all times you are held gently in the Lord's hands and in the heart of one or more of his angels both here and in heaven."

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."

Surgery Day

Monday, June 15, 2009 -- Sternotomy Day!

Quote of the day (Thanks Charlie for writing this prayer!): O God, the source of all health. Fill our hearts with faith and the surgeon's hands with skill to create healing and health. Light our path of uncertainty with the light of faith and lead Mattie to wellness. Grant strength and courage to Vicki and Peter and help the community of caring provide them the support and strength they need at this time. In the spirit of love and your holy name we pray, Amen.

As many of you know, I tried to write continuous updates all day today. I was doing quite well there for a while, except after my last update, I forget to click on "publish post," so in essence there were several hours this afternoon where NO current updates were present. I am sorry to worry some of you! We are all doing as well as can be expected. I will do a recap here and share some other information which I did not post earlier today.

I am proud to report that Mattie's blog was visited 1400 times today! Unbelievable and downright incredible! How do I ever thank you for this kind of support and devotion? I don't know, but your presence, love, prayers, and good thoughts contributed to the success of the day. We had many hospital staff visit with us as well. Their support and concern was incredible. Mattie's social worker, Denise, gave me a gift of a hanging angel ornament. The angel is swinging over Mattie's bed at the moment. Jenny (one of Mattie's art therapists) came by with a wonderful cardboard box structure that Maya (a clinic buddy) created for Mattie today. Maya was very concerned about Mattie, and it was touching that she created an airplane, with two special passengers (Mattie and Maya!). Of course Linda was by our side and helped throughout the day, especially escorting us to the PACU to see Mattie post surgery. Also Linda brightened up our day as we walked to the OR playing ABBA music! Mattie's oncologist, Dr. Synder, also visited and with her warm smile and caring nature tried to provide Peter and I with hope and a charge toward the future. As a worn out parent, I cling to these special moments. In addition, Dr. Chahine visited us numerous times today. I am thoroughly impressed with his bedside manner and his openness to answer questions and hear our concerns. I am very grateful to Dr. Chahine and his colleague, Dr. Guzetta (from Children's National Medical Center) for teaming up and pulling out every lung lesion they could detect.

Nine lung lesions were pulled out today. We knew about four, and the other five were so tiny, like grains of sand. Undetectable by a scan, which is why such invasive procedures like a sternotomy must be done for kids with osteosarcoma. I am thrilled to report no bones were broken during the surgery and I am equally thrilled to report that Mattie's pain is being managed beautifully. We made the right decision to have this surgery done at Georgetown. You just can't beat the staff and level of attention Mattie is receiving. We do not only have one or two interested parties in Mattie's recovery, we have an entire team working on Mattie, and motivated to help. The PICU nurses have been angels. I really think the fact that we have all gotten the opportunity to see each other over the course of the last 11 months (since the oncology unit is housed within the PICU), has helped with our rapport and mutual appreciation for each other.

It is 10:20pm and Peter and I finished a wonderful dinner provided by the Cruze family. Thank you for supporting us through this tough day! Brenna, our fabulous PICU nurse who also helped us through Mattie's other extensive surgeries is helping us tonight. Mattie is scheduled for an x-ray of his lungs at 1am, because a radiologist assessed that there is a portion of the lung that is collapsed from the post surgery x-ray that was taken today. So this is a follow up to see if the status changed. None the less Mattie is comfortable and pretty much knocked out. Of course I worry about what happens when he does become conscious, because I can clearly see that the large chest tubes (the tubes are sucking out blood and other fluids from Mattie's surgical sites) coming out of his lower chest are quite painful. Imagine trying to breathe, and with each breath, these plastic tubes coming through your skin and ribs move. The thought is painful, I can only imagine how it feels. Mattie's epidural is working successfully, and he is occasionally receiving boluses of IV pain medications.

I had the good fortune to witness THREE Miracles today. All good things come in threes I hear. While Mattie was in surgery, Ann and I text messaged each other back and forth. She let me know that she was driving on the highway with her girls in the car, and all of a sudden her car died. She was lucky to be able to pull over to the side of the fast moving highway. All I could think of while I was hearing this story is that she could have been killed or injured today. I began to worry about her, and when I actually connected with her live, I told her she was an excellent distraction for us today, because I stopped worrying about Mattie for one minute and faced another equally scary reality. I am happy to report that Ann and the girls are fine! Ann's situation was the first Mattie Miracle of the day. So I felt this was a positive sign for good things to come. The second Mattie Miracle was that his surgery was two hours long. In comparison to Mattie's limb salvaging surgeries which ranged from 8-12 hours long, two hours seemed like a blessing. The third and final Mattie Miracle was to see Mattie's pain so well managed. So today, despite the fact that it was SUPER stressful, and I know we have VERY hard days of recovery ahead, we feel very thankful that Mattie pulled through the surgery so well.

Later this afternoon, I had a visit from my good friend, Amany. Amany and I went to graduate school together. I did not know she was planning on visiting, but she wanted to provide emotional support to Peter and I today. While Mattie was resting, Amany and I had a wonderful discussion which we promised to continue by e-mail. Amany and I are known for getting into philosophical dialogues and of course for exploring the depths of our emotions and inner most feelings. Amany and I got into a discussion about the blog. Amany reads it religiously. She threw out a question to me and I threw out a question to her. She asked me how could I write the blog each day when I am thoroughly sleep deprived and for all intensive purposes should be cognitively impaired based on my current lifestyle. But she continued. She said, have I ever noticed that I make few to none typographical errors and that I also present things in a very holistic and comprehensive fashion. I hadn't thought about that, but she got me thinking, because the question really is, why do I write the blog? What motivates me to do this and what force drives me to complete it each night? I could give you a trite answer, but I think the question is more meaningful and deserves me to think this through for a while. I then asked Amany why do people read the blog? What motivates people to stay involved, to help in extra ordinary ways, etc.? Amany gave me some very meaningful answers, which I asked her to put into written words and send to me. I guess today's conversation just made me understand that as my readers admire me, I also admire you! We are both fascinated by each other, and studying human dynamics not only professionally interests me, but personally embodies who I am. Any case, as always Amany stimulated my thinking today, made me feel mentally alive, and of course appreciated.

I received HUNDREDS of personal e-mails today. I should really copy each and every one of them here. But know that each word you wrote me today made me smile, kept my spirits going, and I have no doubt helped achieve a successful outcome for Mattie. I end tonight's posting with two messages. The first is from my friend, Charlie. Charlie wrote, "I know that Sunday was a very trying day and that it was impossible to rest or be at ease with the surgery looming. It must have been incredibly frustrating to see the planned walk turn into an obstacle course; this sounds so much like the past year for your family. Just as you got past one thing, another problem seemed to crop up. However, working together you all made it and perhaps that is indicative of how things will work out now. I realize the stress is overwhelming and I can only suggest that you do whatever helps you to cope. Read, walk, pray, find support in others. Know that many hearts and voices are united this morning in faith and prayer for Mattie and I believe that he will come through this with the help of the Lord and skill of the surgical staff. As impossible as it might seem to relinquish control, sometimes all we have is love, faith and prayer as our own hands don't have the skills necessary to accomplish the task."

The second message is from my friend Carolyn. Carolyn wrote, "And I LOVE the pictures this morning – glad your morning went as “smoothly” as anything like this could. And, if you need a little laugh – Ellie Carolyn's daughter) was full of questions this morning about why those “bone bugs” like Mattie so much – I told her that they just must think that Mattie is “pretty sweet and tasty” – and her reply was “Well, you better keep Mattie away from Gavin (Carolyn's son) then” – when I asked why she responded “because he likes anything that is “tasty” and he may try to gobble up Mattie too!”

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Literally I couldn't sleep last night. My mind couldn't shut off. Mattie handled today like a CHAMP. You all would have been proud of him. I woke him up at 8:30am, sang our morning wake up song, and told him it was surgery day. He greeted the day with a smile, and Linda was here and brought a special treat, a juggler (Dana). Mattie's good mood was truly remarkable and made it somewhat easier for Peter and I.

We would like to share some pictures with you. Enjoy! Peter walked Mattie into the OR at 10am. Dr. Chahine was lovely spoke to us in Mattie's room and discussed possible complications, which I can't even reflect upon right now! I assure you there is a TON that could go wrong today. I was alarmed that Mattie's incision will be about a foot long and he may come back up to us intubated. We will keep you posted! Both the PICU and HEM/ONC nurses have been incredibly supportive today, and Tricia had her arm around me the entire time the anesthesiologist was talking with me. To all of you, I want to say THANK YOU for the incredible support today, we could use all your prayers and good thoughts. With much appreciation, Vicki

Left: Mattie's cousins in Boston sent this picture this morning in support of Mattie. Thanks Nat, Sydney, and Will!

Right: Linda brought a wonderful juggler, Dana, in this morning to entertain Mattie! Dana was a lot of fun and helped lighten the mood for all of us.


























Left: Tricia and Katie (our wonderful HEM/ONC nurses on the floor today) came in to play with Mattie. Pictured is Tricia, Linda, Dana, and Mattie.

Right: Linda helped write a message to Dr. Chahine from Mattie. I thought writing, "Dr. Chahine give us a Mattie Miracle" would be appropriate.

















Left: Linda snapped a picture of us before Mattie was wheeled off to surgery!





At 11:30am, Gail (our surgical liaison) called to introduce herself to us. She let us know that Mattie is fully sedated now and the operation will be under way shortly. She promised to call every 90 minutes, and as she does, I will alert all of you. Just to give you some feeling for electronic traffic on the blog today, within a two hour time span Mattie's blog has been hit 300 times. Thank you for sticking this out with us!

1:22pm: The surgery began at 11:22am. Dr. Chahine called me and said the surgery is NOW over. I am stunned. Dr. Chahine and Dr. Guzetta (from Children's National Medical Center) just spoke with us. They found 5 lesions on the left and 3 lesions on the right. Thank God they are out! Mattie got through the surgery with NO broken bones! Excellent news. Mattie is being stitched up now and will go to the PACU (post anesthesia care unit). Most likely he won't be intubated. We are not sure when we will see him, but the next 24 hours or so are crucial for pain management. THANK YOU for ALL the e-mails today, blog postings, and pictures you are sending me. I will write more soon. But your thoughts are helping us through this day and this entire nightmare.

We love the pictures being sent to us today from our friends! Thanks for supporting Mattie and wearing shirts and wristbands today.

Left: The Murphy Family!
Right: The Keefe Family!


















2:00pm: I received an e-mail today from Katie, one of our lovely HEM/ONC nurses. She asked whether we wanted to switch rooms in the PICU, to room 16, which is the room we had at Easter time. It is the ONLY large room with a private bathroom in the unit. Well we jumped at that opportunity and ran back to the PICU to transfer our things before we went to visit Mattie in the PACU. We want to thank Jane, who is a gifted PICU nurse for helping us secure this room. Jane took great care of Mattie during his second surgery and is looking out for us during this one.

4:25pm: We are now back in Mattie's room in the PICU. Linda came to get Peter and I and escorted us to the PACU where we spent about an hour with Mattie. This recovery process SO far has been quite differently mainly because I think now everyone knows we want NO pain. Also after two other major surgeries they know what works for Mattie. So I have to say things are going better than I expected on the pain management front.

Dr. Chahine came by, along with Dr. Gonzalez (one of our HEM/ONC doctors). Dr. Chahine let us know that he removed actually NINE lesions today. They call it 8 specimens because two of the lesions were stuck together. But in total, there were nine lesions officially. Mattie lost only a small amount of blood during surgery, and has no broken bones. Dr. Chahine is very pleased, and I have learned from watching Dr. Bob, that if a surgeon is pleased with his work, then that is a very good sign! Mattie is receiving three pain medications: Bupivicaine, Fentanyl, and Precedex. I am so pleased to see the PICU and the pain management folks really working as a team, and I know with Dr. Gonzalez on call as our HEM/ONC doctor, that our questions will be answered.

However, Mattie does have about an 8-9 inch incision on his chest, and it is covered up so we can't see it thankfully. The chest tubes coming out of his body are intimidating and PAINFUL. The tube itself is about a quarter inch diameter. So try to picture these tubes coming out of your sides to drain fluids and blood from the surgical site. Needless to say, everytime Mattie breathes, the tube moves on his body, and this is what is down right painful. When Mattie wakes up this is the area of greatest pain. Also, because his sternum has been cut, his chest looks like it flutters and jiggles when he breathes, which is also unsettling to look at. Mattie is receiving an epidural, which is helping, but he definitely needs break through pain medication, because all movement is painful. As I am writing this portion of the posting, Mattie is moaning, but still very out of it.