Wednesday, November 12, 2008

Wednesday, November 12, 2008

Message of the day (thanks Susan!): "Faith consists in believing when it is beyond the power of reason to believe." Voltaire

8:15am: Mattie finally fell asleep at midnight, but was up at 4am, rather upset. So I got up and jumped into his hospital bed with him, and we attempted to rest until 6am. At 6am, the lights went on and vitals were taken. It was quite a good morning wake up call. We are in room 1 of the PICU which is a total experience, filled with noise, and basically almost impossible to sleep. We tried to prep Mattie for this morning, but he was very groggy at 6am. Linda came in early and used a projector to display an amazing light show of stars for Mattie, which he found fascinating and was a great distraction. Mattie handled the transition from the room down to the OR like a champ. Totally incredible fellow. In the pre-op area, Mattie was greeted by several doctors and nurses, this number of people is almost overwhelming at 6 something in the morning. You can see a picture of Mattie before being wheeled off to the OR, with a beautiful smile on his face. Peter was in his "bunny suit" because he headed into the OR with Mattie until he was sleep. We will try to keep you updated throughout the day about Mattie's progress.

10:30am/12:15pm: Melissa, our surgerical liaison called me at 10:30am, to let me know Mattie was stable and the surgery got underway at 9:05am. At 12:15pm, we had the opportunity to meet with Melissa. She let us know that Mattie continues to be stable, doing fine, and his left humerus tumor is now removed, and they are working on Mattie's right femur (by the knee). Bob told me this morning that the goal is to remove all three tumors today, but based on Mattie's condition during surgery and potentially if anything else arises, that this could change the course of the surgery. Meaning that Mattie may not have all three sites operated on today. At the moment, things are looking like they are on target.

Thanks Charlie for the inspirational quotes for today!

Where hope grows, miracles blossom. - Elna Rae
No matter how steep the mountain - the Lord is going to climb it with you. - Helen Steiner Rice
Faith is a bird that feels dawn breaking and sings while it is still dark. -Scandinavian Saying

2:45pm: I just got a phone call from Melissa. She told me she had good news. The news is that Mattie's arm and leg have been operated on, and the incisions are now closed. Bob is working on the wrist now. I have no estimate of time of completion, but the fact that Mattie continues to be stable and Bob is able to work on the third tumor is a positive sign.

4:30pm: Melissa called with an update. Bob is continuing to work on Mattie's wrist bone graft. But Mattie is holding his own and is stable!

5:20pm: Jane, the PICU charge nurse just checked in with Peter and I. She called the OR and Bob reports that the surgery will continue for another hour! Just wanted to keep all of you in the loop. THANK YOU, THANK YOU for staying posted and for all your messages today! We feel like we are in a time warp or fog at the moment.

5:45pm: Bob just paid us a visit to Mattie's room. Mattie is still in the OR and being stitched up. Bob said there were NO surprises. In Bob's words, Mattie is now disease free. Wow! Bob removed 12cm of bone in the femur and 12 cm of bone in the left humerus. He also took out 5cm from the fibula (a bone not really needed for walking and movement) in the right leg and put that into the left radius for the bone graft. Additionally, Bob engineered a piece of the humerus as a bridge between the different sized radius and fibula. Mattie will most likely be in the recovery room for a hour or so. So we still wait, pace, and wonder when we will see Mattie. But it was such a blessing to see Bob and to hear his report. Bob said he took pictures during surgery and will send some to Mattie.

6:40pm: Mattie is now out of surgery and in the PACU (post anesthesia care unit). We are trying to to get down there to comfort Mattie within 30 minutes or so. Another bit of positive news is that Bob was able to preserve the left arm's nerve and muscle, so Mattie's prospects for functioning in that arm should be much better.

7pm: Peter and I spoke with Toby (the PICU nursing manager) at 7pm and asked if we could visit Mattie in the PACU. Toby called and advocated on our behalf. Within minutes, he spoke to the staff in the PACU, and then he escorted us down. When we entered the PACU, Mattie was surrounded by three nurses. One nurse was more lovely than the next. They were outstanding, competent, and compassionate. They couldn't do enough for Mattie or us. What an amazing experience that was. Peter and I spent the next hour in the PACU until Mattie was stable enough to come upstairs.

8:30pm: Mattie got back to his room and was in pain. They have been giving him fentenol to manage the pain, and Dr. Natarajan (the PICU intensivist) was on the scene to help us and to get the PCA pump for Mattie. It is 10:20pm, the PCA pump has just arrived.

10:20pm: Mattie has developed a fever (not unlike what happened during the last surgery), and has been vomiting. So he is now on Zolfran (an anti-emetic). The goal for the night is to make him comfortable and to rest.

I am not sure how I would describe today. It felt like I was frozen in time, or living life in slow motion. The ten hours Mattie was gone and in the OR seemed like an eternity! If I did not know he was with Bob, I probably would have really been besides myself. But I am at peace with Bob. I think Bob is the best and most capable surgeon to work with Mattie (and as you know Mattie's case is unique and challenging). Bob has guided us correctly every step of the way, and to have faith in a doctor makes all the difference in the world. Once again, Bob performed a miracle today. God works in mysterious ways, and all the prayers and good wishes that have been directed toward Mattie today, were answered. I believe God channels his powers through us on earth, and Bob is one of those people who has received God's special talents and skills. When Bob came up to Mattie's room this evening, after 10 hours of surgery, I asked how he was. Bob responded, "do not worry about me." I told him I always worry about him, because if Bob isn't okay neither is Mattie. Bob laughed at that. Bob stayed after the surgery and met us in the PACU. In the PACU Bob shared with us an x-ray they took of Mattie's wrist after the graft was put in place. We got to keep these x-ray copies, and I am sure Mattie will simply love them. When I looked at the graft, one thing was very apparent, this was not only a medical miracle to see, but an engineering feat. It almost looked like Bob built a beautiful trestle train bridge to strengthen Mattie's wrist. Of course, I feel Bob is too humble to really tell me about his work, but I have a feeling not everyone could have designed what he put together today.

I am now sitting watching Mattie, and I am in awe of what he survived today. Three major surgeries in 10 hours! All I can say is wow! I know the road ahead for Mattie won't be easy, but there is something to be said for surviving such major surgeries. He is a fighter! Before I sign off tonight, I want to THANK all of you for your prayers, wishes, e-mails, messages, and concern that you expressed to us today. You all have empowered us through this very difficult day, and your comments are so touching and meaningful. Thank you for your support and not just for today, but for your steadfast commitment to go the distance with us.