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.